Just wanted to post a quick update. All is going smoothly with feeding tube and giving her meds through the tube(we love that part of the tube). I have a few concerns. Mackynlee is very restless especially during the night. I feel like this is a side effect of the combo of meds that she is taking. I am also concerned because her eating with the bottle is decreasing instead of increasing. She has been taking in aroung 200mls of formula with her bottle. Yesterday she only took in 130ml's. This really bothers me. Dr. Shores(heart doc) will see if the pleural effusion has gotten any smaller. I pray it is completely gone away and we can begin taking Mackynlee off of some of her meds (she is on four diuretics). Dr. Bruce (neurologist) and I will discuss seizure meds. Mackynlee has only had a very few and very mild seizures since being discharged from the hospital four days ago. I also hope we can reduce some of the seizure meds.
I will post an update on what news we get from the doctors as soon as I can. I am enjoying being home with my family, but it is crazy busy around here!!! This is the first time I have been on my computer since I have been home. There is no time to goof off with three kids needing you!!!
I want to ask all of my readers to pray specifically this week for my friend, Rhonda Pittman. She will begin her fight against breast cancer tomorrow.
Lord, thank you for your loving kindness and tender mercies towards your children. Thank you for being a God who wants His people to be whole. Lord, I ask that you intervene and help Rhonda and her family as they begin the battle against cancer. I am confident that you will deliver her because you not only hear but
answer prayers. Thank you for the answer in Jesus Precious Name. Amen and Amen.
Tuesday, October 27, 2009
Wednesday, October 21, 2009
A Curvy Road
Mackynlee is taking us down a curvy road right now. We do not know how long it will be before she decides to head down a straight road to recovery or how long she will continue to be on the curvy road. Her seizure activity still seems to be under control. The two concerns now are her heart (plueral effusion) and feeding issues. Today she went for an echo. This showed no sign of a pericardial effusion. This is good news, but there is still a small pleural effusion that doctors must watch. If this gets larger, there is a possibility doctors will have to draw some fluid from the effusion and check to see if she has chylothorax. This is issues with her body breaking down fat content. But, there has been another mistake. Yes, you heard me correctly, another mistake!! This time with the way she was being fed through the tube. Last night she was given 77ml's an hour continuously through the ng tube. This shouldn't have happened. She was volmitting by 1:30am due to an overload. This volume added up to being over 2 ounces an hour, over 8 ounces for 4hours. Twice as much as she is suppose to get. She is only suppose to get 40ml's an hour. Did I tell you that I feel like a nurse myself these days? I now know how to calculate the formula as to how much she will get through continouos feeds tonight. So it will be done correctly!! This could be the only problem. I pray that it is. If so the effusion should clear up and if our eating issues subside, we may get to go home soon. My guess is no sooner than Monday, but that is better than what I have had in my mind. I've been thinking it will be weeks before we even could think of going home. Pray that the feedings go well tonight and the effusion is minimized by the xray in the morning.
Okay, now I have to make confessions to my heart mom friends:
Confession#1) I think I have always down played feeding issues. I now know how difficult this situation can be. Even with a feeding tube, there can be problems. Mackynlee can not have too much fluid, but can not go with too little either. There's no exact formula, so for every baby it is different. This is just figured out by trial and error. It is very frustration and can cause many set backs!!
Confession#2) As I have read about different ones of you with heart babies close to a hospital, and as I have met different ones at CHOP with heart babies that didn't leave but a few hours away from the hospital, I always thought you had it a little easier in that aspect as I did not being able to get in my car and drive a couple of hours to get home and be with my other children. Well, I have realized since I am just two hours away from my home that it is not as easy as I thought. I am planning to go home tomorrow, but I am so not at peace about this. Meemaw is going to be with the baby. I know she will take good care of her. I trust her so much and she knows Mackynlee almost as well as me. But there is just so many feelings and thoughts about leaving her here. Like I said, much more difficult than I ever imagined.
Confession#3) This is also about living close to the hospital. My 3 year old got to spend the day and night with me yesterday. This was good, but also tiring. Visiting with your babies in the hospital setting is so not fulfilling, but I guess it is best to get to see them, than being at CHOP where I cannot see them at all.
Many of you have told me that you have no idea how I keep my carepage up so well. It is definitely easier to do so at CHOP than here in MS. I think it is because I had myself on a schedule there. I never had any visitors, so there was plenty of time to journal. Even though I enjoy keeping my carepage up, it is more difficult for me right now. Maybe I am just sick of everything!! Sick of the hospitals, nurses(especially the ones that don't know their head from a whole in the ground), doctors, educated guesses, big words I don't understand, stupid beeping noises, and most of all those ladies that check vitals!! I hate the sound of their squeaky little things they push!! I have had to make them come back later to get vitals because Mackynlee was almost asleep. I ask them to come back when she is sound to sleep. I know they have to do their job, but give us a break. We are on a heart monitor and SATs monitor.
Our thoughts and prayers go out to the family and friends of Mike Thornhill. He passed away yesterday. He is a friend and neighbor of ours that was in a motorcycle accident a few weeks ago.
For the Lord does not abandon anyone forever. Though he brings grief, he also shows compassion according to the greatness of his unfailing love."
Lamentations 3:22-26; 31-32
Dear Lord,
Please help this family in this time of loss and overwhelming grief. We don't understand why life is filled with such pain and heartache. But I pray this family will turn their eyes to You and seek to find the strength to trust in Your faithfulness. I pray they will wait on You and not despair and will quietly wait for Your salvation. Please show this family your compassion, Lord. Help them through the pain. Though we can't see past today, we trust Your great love will never fail us.
Amen
Okay, now I have to make confessions to my heart mom friends:
Confession#1) I think I have always down played feeding issues. I now know how difficult this situation can be. Even with a feeding tube, there can be problems. Mackynlee can not have too much fluid, but can not go with too little either. There's no exact formula, so for every baby it is different. This is just figured out by trial and error. It is very frustration and can cause many set backs!!
Confession#2) As I have read about different ones of you with heart babies close to a hospital, and as I have met different ones at CHOP with heart babies that didn't leave but a few hours away from the hospital, I always thought you had it a little easier in that aspect as I did not being able to get in my car and drive a couple of hours to get home and be with my other children. Well, I have realized since I am just two hours away from my home that it is not as easy as I thought. I am planning to go home tomorrow, but I am so not at peace about this. Meemaw is going to be with the baby. I know she will take good care of her. I trust her so much and she knows Mackynlee almost as well as me. But there is just so many feelings and thoughts about leaving her here. Like I said, much more difficult than I ever imagined.
Confession#3) This is also about living close to the hospital. My 3 year old got to spend the day and night with me yesterday. This was good, but also tiring. Visiting with your babies in the hospital setting is so not fulfilling, but I guess it is best to get to see them, than being at CHOP where I cannot see them at all.
Many of you have told me that you have no idea how I keep my carepage up so well. It is definitely easier to do so at CHOP than here in MS. I think it is because I had myself on a schedule there. I never had any visitors, so there was plenty of time to journal. Even though I enjoy keeping my carepage up, it is more difficult for me right now. Maybe I am just sick of everything!! Sick of the hospitals, nurses(especially the ones that don't know their head from a whole in the ground), doctors, educated guesses, big words I don't understand, stupid beeping noises, and most of all those ladies that check vitals!! I hate the sound of their squeaky little things they push!! I have had to make them come back later to get vitals because Mackynlee was almost asleep. I ask them to come back when she is sound to sleep. I know they have to do their job, but give us a break. We are on a heart monitor and SATs monitor.
Our thoughts and prayers go out to the family and friends of Mike Thornhill. He passed away yesterday. He is a friend and neighbor of ours that was in a motorcycle accident a few weeks ago.
For the Lord does not abandon anyone forever. Though he brings grief, he also shows compassion according to the greatness of his unfailing love."
Lamentations 3:22-26; 31-32
Dear Lord,
Please help this family in this time of loss and overwhelming grief. We don't understand why life is filled with such pain and heartache. But I pray this family will turn their eyes to You and seek to find the strength to trust in Your faithfulness. I pray they will wait on You and not despair and will quietly wait for Your salvation. Please show this family your compassion, Lord. Help them through the pain. Though we can't see past today, we trust Your great love will never fail us.
Amen
Monday, October 19, 2009
Moved to a Room
1 Thessalonians 5:18
In every thing give thanks: for this is the will of God in Christ Jesus concerning you.
If we want to know the will of God for our lives here is one clue: Give thanks in all circumstances.
One might say, "How could I give thanks? You don't know my circumstances. I have absolutely no reason to give thanks for what happened to me." But in not giving thanks we relegate ourselves to the tyranny of a broken and fallen world.
The Bible speaks of a fallen creation that needs rescue. Giving thanks reminds us and aligns us with God's rescue plan for our lives.
Yesterday we got a good surprise and a bad surprise. We were able to be released from the PICU and moved back to the floor. Our bad surpise is that we got a feeding tube. I asked all to pray for improved eating, all did and God answered the prayers (just not the way I wanted!!). Oh well, it is not the end of the world. She should only have it for a couple of months. The good thing about the feeding tube is that we can give her meds through it!!! Yay. She hates the tastes of several of her meds, so no more fighting to get them down her for a while. I want to share with you what Meemaw posted to my face book page. She said it best:
Thank you Lord for the feeding tube which will sustain this precious life as she regains her strength and her body heals. Please keep Your hand upon her and limit the days that the tube will need to remain in place. We long for the day when all Mackynlee's problems are resolved and we trust in You to complete her healing in Your perfect timing. May all who play a part in her care be positively effected by this precious child and her family. Help all of us who have had the privilege of being a part of Mackynlee's life learn the lessons she is helping You to teach us.
We are not sure when we will be able to go home. Neurologist says from her standpoint it is fine. Cardiologist says no way just yet. Her heart is still enlarged from the stress of Thursday night. There is fluid still in the chest area, but the pleural efusion has subsided (no drainage tube needed for sure).
Hospital life is really wearing on me. My body is sore! I feel like i have been lifting weights. I guess it is because of my comfy recliner/bed that I have been sharing with Mark. LOL
Today I will talk with a pediatric nutritionist. The nutritionist that I spoke with over the weekend acted as if it were no big deal if she ate or not. Then I found out she was an adult nutritionists, not a pediatric. I hope to get set up with a pediatric nutritionist in Hattiesburg. Does anyone know a good one, or one at all in that area?
BE THANKFUL
Be thankful that you don't already have everything you desire. If you did, what would there be to look forward to?
Be thankful when you don't know something, for it gives you the opportunity to learn.
Be thankful for the difficult times. During those times you grow.
Be thankful for your limitations, because they give you opportunities for improvement.
Be thankful for your mistakes. They will teach you valuable lessons.
Be thankful when you're tired and weary, because it means you've made a difference.
It's easy to be thankful for the good things.
A life of rich fulfillment comes to those who are also thankful for the setbacks.
Find a way to be thankful for your troubles, and they can become your blessings.
In every thing give thanks: for this is the will of God in Christ Jesus concerning you.
If we want to know the will of God for our lives here is one clue: Give thanks in all circumstances.
One might say, "How could I give thanks? You don't know my circumstances. I have absolutely no reason to give thanks for what happened to me." But in not giving thanks we relegate ourselves to the tyranny of a broken and fallen world.
The Bible speaks of a fallen creation that needs rescue. Giving thanks reminds us and aligns us with God's rescue plan for our lives.
Yesterday we got a good surprise and a bad surprise. We were able to be released from the PICU and moved back to the floor. Our bad surpise is that we got a feeding tube. I asked all to pray for improved eating, all did and God answered the prayers (just not the way I wanted!!). Oh well, it is not the end of the world. She should only have it for a couple of months. The good thing about the feeding tube is that we can give her meds through it!!! Yay. She hates the tastes of several of her meds, so no more fighting to get them down her for a while. I want to share with you what Meemaw posted to my face book page. She said it best:
Thank you Lord for the feeding tube which will sustain this precious life as she regains her strength and her body heals. Please keep Your hand upon her and limit the days that the tube will need to remain in place. We long for the day when all Mackynlee's problems are resolved and we trust in You to complete her healing in Your perfect timing. May all who play a part in her care be positively effected by this precious child and her family. Help all of us who have had the privilege of being a part of Mackynlee's life learn the lessons she is helping You to teach us.
We are not sure when we will be able to go home. Neurologist says from her standpoint it is fine. Cardiologist says no way just yet. Her heart is still enlarged from the stress of Thursday night. There is fluid still in the chest area, but the pleural efusion has subsided (no drainage tube needed for sure).
Hospital life is really wearing on me. My body is sore! I feel like i have been lifting weights. I guess it is because of my comfy recliner/bed that I have been sharing with Mark. LOL
Today I will talk with a pediatric nutritionist. The nutritionist that I spoke with over the weekend acted as if it were no big deal if she ate or not. Then I found out she was an adult nutritionists, not a pediatric. I hope to get set up with a pediatric nutritionist in Hattiesburg. Does anyone know a good one, or one at all in that area?
BE THANKFUL
Be thankful that you don't already have everything you desire. If you did, what would there be to look forward to?
Be thankful when you don't know something, for it gives you the opportunity to learn.
Be thankful for the difficult times. During those times you grow.
Be thankful for your limitations, because they give you opportunities for improvement.
Be thankful for your mistakes. They will teach you valuable lessons.
Be thankful when you're tired and weary, because it means you've made a difference.
It's easy to be thankful for the good things.
A life of rich fulfillment comes to those who are also thankful for the setbacks.
Find a way to be thankful for your troubles, and they can become your blessings.
Saturday, October 17, 2009
SEIZURES
Just met with a neurologist. (Weird meeting with a doc at this time of night on a Saturday night.) I left the hospital to go to Wal-mart about 10ish and she came by. Mark told her to come back. To my surprise she did. Her name is Dr. Bruce. She is going to be our neurologist after we are discharged for two reasons. She actually came to talk with us, wasn't in a hurry, and has answers for us. She watched a home video that I made of one of Mackynlee's "episodes". Mackynlee has been having seizures. The seizures she is having are called complex-partial seizures. Dr. Bruce has increased her seizure medicine and has given me the peace of mind I have been needing. She has explained everything very well. If I feel uncomfortable after returning home, I may call her or email her at anytime. These seizures should not cause damage to her brain and she should eventually stop having them. The brain bleed is not as bad as it was a week ago, but it is still there.
Mackynlee has had a good day today. We may get to move to a room tomorrow. We really enjoyed all of our visitors today. The day passed so quickly.
Sundays are always the best day! Everyone joins together in prayer. Here's a list.
Specific Prayer Request
Pray for continued overall improvement (fluid goes away, no more seizures, eating improves).
Pray for us to be able to go home soon and feel okay about taking her home.
Pray after we return home all of these issues will be no longer. Pray we have a peace of mind that all will be okay.
Pray for Shelby and Connor during our time away from them once again. Even though they have been for a visit, it is not the same as being at home together as a family. Being at home as a family was only a few days between hospital stays.
Thank you all for your prayers. It is so nice and releaves such stress and tension knowing what a huge group of prayer warriers we have lifting us up each day. Words cannot express our appreciation.
2 Chronicles 7:14-15
If my people, who are called by my name, will humble themselves and pray and seek my face and turn from their wicked ways, then will I hear from heaven and will forgive their sin and will heal their land. Now my eyes will be open and my ears attentive to the prayers offered in this place.
Mackynlee has had a good day today. We may get to move to a room tomorrow. We really enjoyed all of our visitors today. The day passed so quickly.
Sundays are always the best day! Everyone joins together in prayer. Here's a list.
Specific Prayer Request
Pray for continued overall improvement (fluid goes away, no more seizures, eating improves).
Pray for us to be able to go home soon and feel okay about taking her home.
Pray after we return home all of these issues will be no longer. Pray we have a peace of mind that all will be okay.
Pray for Shelby and Connor during our time away from them once again. Even though they have been for a visit, it is not the same as being at home together as a family. Being at home as a family was only a few days between hospital stays.
Thank you all for your prayers. It is so nice and releaves such stress and tension knowing what a huge group of prayer warriers we have lifting us up each day. Words cannot express our appreciation.
2 Chronicles 7:14-15
If my people, who are called by my name, will humble themselves and pray and seek my face and turn from their wicked ways, then will I hear from heaven and will forgive their sin and will heal their land. Now my eyes will be open and my ears attentive to the prayers offered in this place.
Chest X ray Looking Better
The Serenity Prayer
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
--Reinhold Niebuhr
Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will direct your paths.
Proverbs 3, 5-6
Mackynlee had a very good night last night. She is looking much better and acting more and more like herself. The chest xray from yesterday did show a decrease in the fluid. Our heart doc has put her on several IV dieuretics to decrease the fluid. The xray shows from today that the fluid has decreased again!! Heart doc just came by. She feels better about things from a cardiac view.
The MRI shows that the brain bleed is no longer active. There is still blood there. This will take some time to go away. Doctors do think this is what is causing her to have headaches, agitation, and "episodes with her eyes, etc". Neurologist will be coming by today to discuss this in detail.
Mackynlee is not breathing heavy at all anymore. The nurse said her #'s have been stable. She was wondering if we would be moved to a room today. I guess we will find out after doctors make rounds this morning. Either way is fine with me. I do like being here in the PICU. After all we went through on the floor, being here and monitored so closely gives me a piece of mind. If we are moved to the floor, it will be to the heart floor.
Shelby and Connor came to the hospital last night. Shelby got to visit with Mackynlee. I actually left the hospital for the first time. Meemaw and Stephen sat with the baby. Mark and I took Shelby and Connor to Bonsai. This was Connor's first time there. He thought the fire was too cool. I enjoyed taking a little break and being with them. They are still in Jackson today. They spent the night with Meemaw and Stephen. We plan for them to hang out with us at the hospital today, and then head back to Columbia. Not sure how they are going to get there. Meemaw may go home since Mark is here. So, they may ride with her. I don't think our moms are coming back to the hospital today. They were both here yesterday for a while. Perry, my brother, brought Mackynlee a balloon. She has really been watching it this morning.
I was so glad Cindy Stogner came and spent the day with us yesterday. Meemaw got to go rest. She wouldn't leave me by myself. I enjoyed the company. When we got moved to a room in the PICU(we were hanging out in an open area to begin with), I let Cindy watch the baby and I crashed!! She tag teamed with my mom. I don't know how long I slept, but it was very much needed. I also loved the t-shirt you got me Cindy. I am wearing it today. The shirt has a beautiful cross on the back and it says IN HIS HAND IS THE LIFE OF EVERY CREATURE AND THE BREATH OF ALL MANKIND.
JOB 12:10 Thanks Cindy. A new shirt always makes things better!! Enjoying the magazines too!!
Bro. Tim also came by yesterday. He was hopping. I told him I was mad that he came, but he had to come to Jackson for a doc visit anyway. I wasn't quite as mad when he told me that. He had a touching prayer with us. We appreciate him stopping by so much, but we do not want him to become exhausted. He had knee surgery last week.
It is so good to have Mark here. This was part of our wedding vows: I offer you my solemn vow to be your faithful partner in sickness and in health, in good times and in bad, and in joy as well as in sorrow. It really makes a difference to have that support. I am so burdened for these children that are here without parents. A nurse said to me that many belong to single moms that have other children. I just cannot imagine not having someone to lean on. Neither could I imagine leaving my child here. When Mackynlee was in the CICU at CHOP, she had one on one nursing care. We left the hospital to eat, etc. I never felt bad about it, because she was in excellent care, and it was never for a long period of time. These moms have no idea if their child is being taken care of. Most of these do not have one on one care from nurses. It is just hard to see. One child cried for his mom all night. It was such a pitiful cry. I have found out that his mom was with him. He was just in much pain. The difference here from the CICU at CHOP is that there were only heart babies in our unit. Here it is any child that is critical. There are many different reasons and sicknesses mixed together here. (Hope that makes sense.)
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
--Reinhold Niebuhr
Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will direct your paths.
Proverbs 3, 5-6
Mackynlee had a very good night last night. She is looking much better and acting more and more like herself. The chest xray from yesterday did show a decrease in the fluid. Our heart doc has put her on several IV dieuretics to decrease the fluid. The xray shows from today that the fluid has decreased again!! Heart doc just came by. She feels better about things from a cardiac view.
The MRI shows that the brain bleed is no longer active. There is still blood there. This will take some time to go away. Doctors do think this is what is causing her to have headaches, agitation, and "episodes with her eyes, etc". Neurologist will be coming by today to discuss this in detail.
Mackynlee is not breathing heavy at all anymore. The nurse said her #'s have been stable. She was wondering if we would be moved to a room today. I guess we will find out after doctors make rounds this morning. Either way is fine with me. I do like being here in the PICU. After all we went through on the floor, being here and monitored so closely gives me a piece of mind. If we are moved to the floor, it will be to the heart floor.
Shelby and Connor came to the hospital last night. Shelby got to visit with Mackynlee. I actually left the hospital for the first time. Meemaw and Stephen sat with the baby. Mark and I took Shelby and Connor to Bonsai. This was Connor's first time there. He thought the fire was too cool. I enjoyed taking a little break and being with them. They are still in Jackson today. They spent the night with Meemaw and Stephen. We plan for them to hang out with us at the hospital today, and then head back to Columbia. Not sure how they are going to get there. Meemaw may go home since Mark is here. So, they may ride with her. I don't think our moms are coming back to the hospital today. They were both here yesterday for a while. Perry, my brother, brought Mackynlee a balloon. She has really been watching it this morning.
I was so glad Cindy Stogner came and spent the day with us yesterday. Meemaw got to go rest. She wouldn't leave me by myself. I enjoyed the company. When we got moved to a room in the PICU(we were hanging out in an open area to begin with), I let Cindy watch the baby and I crashed!! She tag teamed with my mom. I don't know how long I slept, but it was very much needed. I also loved the t-shirt you got me Cindy. I am wearing it today. The shirt has a beautiful cross on the back and it says IN HIS HAND IS THE LIFE OF EVERY CREATURE AND THE BREATH OF ALL MANKIND.
JOB 12:10 Thanks Cindy. A new shirt always makes things better!! Enjoying the magazines too!!
Bro. Tim also came by yesterday. He was hopping. I told him I was mad that he came, but he had to come to Jackson for a doc visit anyway. I wasn't quite as mad when he told me that. He had a touching prayer with us. We appreciate him stopping by so much, but we do not want him to become exhausted. He had knee surgery last week.
It is so good to have Mark here. This was part of our wedding vows: I offer you my solemn vow to be your faithful partner in sickness and in health, in good times and in bad, and in joy as well as in sorrow. It really makes a difference to have that support. I am so burdened for these children that are here without parents. A nurse said to me that many belong to single moms that have other children. I just cannot imagine not having someone to lean on. Neither could I imagine leaving my child here. When Mackynlee was in the CICU at CHOP, she had one on one nursing care. We left the hospital to eat, etc. I never felt bad about it, because she was in excellent care, and it was never for a long period of time. These moms have no idea if their child is being taken care of. Most of these do not have one on one care from nurses. It is just hard to see. One child cried for his mom all night. It was such a pitiful cry. I have found out that his mom was with him. He was just in much pain. The difference here from the CICU at CHOP is that there were only heart babies in our unit. Here it is any child that is critical. There are many different reasons and sicknesses mixed together here. (Hope that makes sense.)
Friday, October 16, 2009
Being Monitored More Closely
Proverbs 3:5
Trust in the LORD with all thine heart; and lean not unto thine own understanding.
Mark 10:27
And Jesus looking upon them saith, With men it is impossible, but not with God: for with God all things are possible.
We have had an eventful night. Rapid Response was called to our room twice. The last time they were called to our room, we were moved to the PICU stepdown. I feel much better being here than I felt about being on the floor. I don't even know how to tell what all has happened. Her meds were not given because she was on ppo. She was given IV fluid for a lengthy period of time without her lasix. Her body could not handle it. She has had sleep apnea episodes, heavy breathing, sats dropping. Now the cardiologist says we have a pleural efusion. This is going to take several days to get better. The plan is to treat her with lots of dieuretics. If this doesn't work, a tube will be placed. I pray hard this is not what happens.
I told heart doc that Mark is screaming, "Go back to CHOP." She assures me if we need to be there she will send us. Right now it would be dangerous for Mackynlee to fly because of the fluid. Dr. Shores says all of these issues can be handled here for now.
We know that there was blood seen on the MRI, but we do not know yet if it worse, the same, or not as bad as when we were at CHOP. Hoping to find out later today. Cardiologist said she has put word in for the neurologist to get by today and discuss all of this with me.
Although this has been a horrible experience here at UMC, there are many good doctors and nurses. I feel now we are on the right track. I have had many apologizing to me. My response is: POOR COMMUNICATION. I have spoken with nurse managers and later today I am speaking to a person that is over the hospital.
I have picked about my improvement plan for UMC from day 1, but now I am serious about it. I am talking and emailing people. There are many changes that can be made here that will not cost this hospital a thing. I am trying to keep my cool, but get my point across!! I have many stories to tell.
Meemaw was up with us all night. She is now sleeping at Stephen's. Cindy Stogner is in the waiting area. No one is allowed back here except for parents until after 12:00. Then one visitor at a time accompanied by a parent. We will remain here in the PICU stepdown for now. If we are moved, we will be moved to the heart floor. The nurses there have more experience with heart patients.
Thanks Jarod Chance for stopping by. It is such a warm feeling to talk to other heart parents. I aslo enjoyed a visit with Sherry Milner and a phone call from Julie Crump. Both moms of special babies!!
Mark is on his way here. He has been offshore. I decided it were best if he were here in case decisions need to be made. Things can get better in 5 minutes or can get worse in 5 minutes or not change in 5 days. This is a roller coaster ride. Anything with these heart babies is serious!!!!
Shelby and Connor are coming with him. Shelby can come in to see Mackynlee for a few minutes. I think this will be good for Shelby and Mackynlee.
Mackynlee just took a two ounce bottle of formula. Nurse says this is a really good sign!!
Meemaw keeps saying God is here. I have read this over and over.
I am God.
Today I will be handling all your problems.
Please remember that I do not need your help.
If the devil happens to deliver a situation to you
that you cannot handle, do not attempt to resolve it.
Kindly put it in the SFJTD (something for Jesus to do) box.
It will be addressed in my time, not yours.
Once the matter is placed into the box, do not hold on
to it or attempt to remove it.
Holding on or removal will delay the resolution of your problem.
If it is a situation that you think you are capable of handling,
please consult me in prayer to be sure that it is the proper resolution.
Because I do not sleep nor do I slumber,
there is no need for you to lose any sleep.
Rest my child.
If you need to contact me, I am only a prayer away.
Trust in the LORD with all thine heart; and lean not unto thine own understanding.
Mark 10:27
And Jesus looking upon them saith, With men it is impossible, but not with God: for with God all things are possible.
We have had an eventful night. Rapid Response was called to our room twice. The last time they were called to our room, we were moved to the PICU stepdown. I feel much better being here than I felt about being on the floor. I don't even know how to tell what all has happened. Her meds were not given because she was on ppo. She was given IV fluid for a lengthy period of time without her lasix. Her body could not handle it. She has had sleep apnea episodes, heavy breathing, sats dropping. Now the cardiologist says we have a pleural efusion. This is going to take several days to get better. The plan is to treat her with lots of dieuretics. If this doesn't work, a tube will be placed. I pray hard this is not what happens.
I told heart doc that Mark is screaming, "Go back to CHOP." She assures me if we need to be there she will send us. Right now it would be dangerous for Mackynlee to fly because of the fluid. Dr. Shores says all of these issues can be handled here for now.
We know that there was blood seen on the MRI, but we do not know yet if it worse, the same, or not as bad as when we were at CHOP. Hoping to find out later today. Cardiologist said she has put word in for the neurologist to get by today and discuss all of this with me.
Although this has been a horrible experience here at UMC, there are many good doctors and nurses. I feel now we are on the right track. I have had many apologizing to me. My response is: POOR COMMUNICATION. I have spoken with nurse managers and later today I am speaking to a person that is over the hospital.
I have picked about my improvement plan for UMC from day 1, but now I am serious about it. I am talking and emailing people. There are many changes that can be made here that will not cost this hospital a thing. I am trying to keep my cool, but get my point across!! I have many stories to tell.
Meemaw was up with us all night. She is now sleeping at Stephen's. Cindy Stogner is in the waiting area. No one is allowed back here except for parents until after 12:00. Then one visitor at a time accompanied by a parent. We will remain here in the PICU stepdown for now. If we are moved, we will be moved to the heart floor. The nurses there have more experience with heart patients.
Thanks Jarod Chance for stopping by. It is such a warm feeling to talk to other heart parents. I aslo enjoyed a visit with Sherry Milner and a phone call from Julie Crump. Both moms of special babies!!
Mark is on his way here. He has been offshore. I decided it were best if he were here in case decisions need to be made. Things can get better in 5 minutes or can get worse in 5 minutes or not change in 5 days. This is a roller coaster ride. Anything with these heart babies is serious!!!!
Shelby and Connor are coming with him. Shelby can come in to see Mackynlee for a few minutes. I think this will be good for Shelby and Mackynlee.
Mackynlee just took a two ounce bottle of formula. Nurse says this is a really good sign!!
Meemaw keeps saying God is here. I have read this over and over.
I am God.
Today I will be handling all your problems.
Please remember that I do not need your help.
If the devil happens to deliver a situation to you
that you cannot handle, do not attempt to resolve it.
Kindly put it in the SFJTD (something for Jesus to do) box.
It will be addressed in my time, not yours.
Once the matter is placed into the box, do not hold on
to it or attempt to remove it.
Holding on or removal will delay the resolution of your problem.
If it is a situation that you think you are capable of handling,
please consult me in prayer to be sure that it is the proper resolution.
Because I do not sleep nor do I slumber,
there is no need for you to lose any sleep.
Rest my child.
If you need to contact me, I am only a prayer away.
Thursday, October 15, 2009
Finally in MRI
Mackynlee is in the MRI right now. We are waiting for her to come out. This has been a very aggravating day!! Much needed change here at this hospital. I know we will not know anything until tomorrow. I may update again later, if not, assume all is okay. When we leave here we will go up to recovery.
Trying to be more positive
“And we know that to them that love God all things work together for good, even to them that are called according to his purpose.”
(Romans 8: 28)
Not a lot to share this morning. We are waiting on the MRI to take place. Our scheduled time was at 8a.m. We have the same, wonderful nurse again today. We also have a student nurse and her "teacher nurse" with her. Sure we will be getting lots of attention. The pediatrician that came by this morning thinks we will have some answers later this afternoon. He feels like the we will know the MRI report today. He also feels like he will be able to tell us if we will go home soon or have to camp out here for a while.
Yesterday I posted some one line christian funnies. The last one said:
LIFE IS NOT ABOUT WAITING FOR THE STORM TO PASS;
IT IS LEARNING HOW TO DANCE IN THE RAIN.
I have come across this saying many, many times. Some days I feel like that is what I do, but right now, I'm choosing to wait for the storm to pass. Meemaw was enjoying getting to know people yesterday. She was telling me all about the children in the rooms beside us. I choose to keep my door closed. I'm just not wanting to hear others stories right now. I feel bad about this, I'm sure it will pass. I am working on a better attitude. Trying not to be so aggravated about the non communication issues here at UMC. Hoping to get Shelby and Connor here in Jackson tomorrow if we find out today we will be camping out here for a while. That will make things better, too. Shelby is pretty upset about this. That upsets me.
I have been reading a lot this morning. Mackynlee is sleeping. I have been trying to get my mind back focusing on positives. I want to share a true story from one of the blogs I follow. Rereading this story reminds me God is in control and He can perform miracles. HE is the Great Physician!! This is a long story, but it is true and awsome.
A Story of Grace
Sandi
My husband and I found out we were expecting our fifth child in early June 2002. My other children are son (1993), son (1995), and twins - daughter and son (1999). We were very excited about the news and everything seemed “normal” as I began the familiar symptoms of nausea, moodiness and fatigue and I silently prayed for an uneventful nine months.
During my 1st doctor’s visit, the need for prenatal testing (Chronic Villa, Amino, triple screen) was brought up by my doctor. I listened politely, but quickly informed him that I was really not interested and that I would be committed to the pregnancy regardless of any anomalies. He went on to explain to me that I do not know what I would do if I had the information and I should get it anyways. Since I continually declined testing, the doctor wanted to make sure that my ultrasound was done right at 18 weeks.
The ultrasound date came quickly (Monday, September 9, 2002) and my husband and I were excited to see our growing baby. The "routine" ultrasound seemed to be moving along o.k., although it took a very long time and the technician seemed to be taking a lot of pictures of my baby’s bones - arms, legs, feet, hands, etc. We thought this was rather odd and joked between ourselves with eye gestures and smiles. After all of the ultrasound pictures were completed, the technician then left for a long time when she returned, she began taking additional measurements of our baby’s kidneys. I immediately started to worry, but was somewhat relieved that we were not immediately referred to the staff doctor. After that, we were free to go home.
I called my doctor that afternoon, and he later called me back and announced that there were some problems with my baby. Over the phone, he told me that my amniotic fluid was very low; my baby’s bones were small; the femur bones were curved; the head was odd shaped, and the kidneys, stomach and bladder were abnormally sized. In addition, the report said that my baby’s left foot was turned - possibly ‘clubbed’. He referred me to a perinatalogist - and added that the report indicated a pregnancy which in his opinion “smelled liked chromosomal problems” especially in light of my advanced maternal age (37) and that I should keep my options open.
My husband and I quickly reacted. We were lucky enough to get an appointment with the Director of Ultrasound who is a Board Certified Perinatalogist at a well regarded research facility in our major city. The hospital and our doctor both have national reputations in handling high risk pregnancies. We were hopeful that the small local hospital that performed the 1st ultrasound was simply wrong and that the specialists here would set the record straight. My ultrasound was scheduled for Thursday am September 12th.
Our world would never be the same after that day. After an hour long ultrasound performed by a highly skilled technician, the nationally regarded perinatalogist personally came in to perform a second ultrasound (done in uncomfortable silence).
We watched in horror at the whispering between the growing team. Finally, the “curved” femurs were pointed out to my husband and I and we were then asked to wait for the doctor in the office down the hall. The doctor herself arrived about 1/2 hour later. The doctor immediately informed us of the devastating diagnosis--a Lethal type of Skeletal Dysplasia. As a result, there was no reason to mince words—“your baby will die.”
Lethal Skeletal Dysplasia, the doctor explained, is a rare form of dwarfism where not only are the child's arms and legs extremely short /malformed, but the chest cavity is very small. In these circumstances, a baby cannot sustain life for more than a few hours because the narrow chest cavity does not allow the lungs to development properly, allowing them little room to expand and provide the proper amount of oxygen necessary to sustain life. So long as the baby is attached to the mother, she will develop and grow. However, the cutting of the chord is itself the severing of the only lifeline to sustaining the child. As a result, the baby dies of respiratory distress. The options: 1) “Interruption “ of the pregnancy, or 2) continue on, with periodic monitoring of the baby’s condition and prepare for a burial shortly after the birth. We left in a pool of tears and shattered dreams.
Over the course of the next few days, my husband and I discussed our limited “options”. We felt convicted in not terminating, although we did not yet quite understand how long we should carry the baby (i.e. whether or not we should deliver early after seven months?). We counseled with friends, family, and priests. We had such a range of advise, however, one thing really hit home with us. My sister-in-law’s priest explained the confusing situation in such clear and beautiful words - “God does not value a life as a number or years (or even days) we’ve spent alive here on earth, all life is equally valuable to God, no matter how short and we can never fully understand the impact of one life on all of humanity”. It became clear to my husband and I that there really was no decision to make - God was ultimately responsible for the birth (and inevitable death) of my precious child, and to his will we commended her life.
We decided to carry our child to term and to love her for the time that she would spend with us - inside of me. As we made this decision, we embraced her sweets kicks each night; we found out the sex of our baby (something we had never done); and named her the name Grace which means an “undeserved gift” from God.
My original OB, upon receiving the ultrasound report and learning of my desires to carry to term, quickly dropped my case. He did not want to handle my prenatal care and even said that 90% of people with my diagnosis would have “made the appointment” by now. I transferred my care to the perinatal facility, who provided an entire team of specialists that would closely follow our case.
Over the next several months, I entered a fetal assessment program and had ultrasounds performed monthly to monitor my baby’s progress. Our meetings were coordinated by the Director of Genetics , who was not sensitive at all to my decision not to terminate. In fact, until 28 weeks had past (and a termination was no longer possible in our state), this topic was the focus of our monthly meetings. My husband and I stayed the course of our decision and avoided the director's attempts to shed doubt and fear. However, I must admit - It was very difficult not to be bothered by his comments and advice.
The diagnosis of our daughter’s condition was validated at each ultrasound: small femur bones (and other long bones); an easily manipulated bone structure; and a very narrow chest cavity. Her feet were always perplexing to the doctors - no one was ever quite sure what was wrong with them and this apparently was all part of the skeletal dysplasia. During one of the assessment appointments, I had a 3 dimensional ultrasound. A beautiful clear image of daughter’s face was given to my husband and I. We kept this image on the refrigerator door and it carried me through the tough times and me believing in this little life inside of me (although the GE commercials back dropped by the song ‘the first time ever I saw your face’ were simply too hard to handle). I longed for the day to hold her - even if her time alive was very short. I longed for her just the same.
The last of my six separate ultrasounds was performed on December 30, 2002. Grace’s measurements were so poor at this time that they stopped the ultrasound after measuring only one side of her body - in the exam room were the Director of Ultrasound, Director of Genetics, two neonatalogist and a technician. They all agreed that the prognosis of Lethal Skeletal Dysplasia was present and would take Grace’s life upon birth. We provided a birth plan, which stated that there would be no ventilation. Our birth plan stated that the baby was to be wrapped in a blanket and given to my husband and me after birth so that we could spend time with her - her predicted life span “4 to 6 hours”. The hospital agreed to let our 4 other children come to see their sibling on her birth day. We talked to our priest who agreed to come to the hospital to baptize the baby when she was born. The only other arrangements we had made were with the cemetery.
On January 8th, 2003, I started to have some slight cramping and other symptoms indicating that I may be going into early labor. My husband had a short trip to Arizona planned and he was leaving on the early flight the next day. I told him about my symptoms and he insisted that I call my doctor. My doctor said to come to the hospital in the morning and he could check me out. Convinced that I may be going into labor, I packed my bags and loaded them in the car. My husband rescheduled his flight to the afternoon.
On the morning of January 9th, I was hooked up to a fetal monitor and checked for dilation/effacement at the hospital. The doctor calmly stated that I had not dilated at all and my cervix didn’t appear shortened. He said that he was confident that I would not deliver until closer to my due date - February 18th. He told my husband to catch the next plane out. Relieved by the news, I drove my husband to the airport on an unusually warm and sunny January day. Feeling better than I had felt in months, I drove home and felt and unusual peace and happiness. Not that my daughter would live - but just that God would give me strength to endure what lied ahead for us. Despite mental lapses caused by such things as date on the milk that wouldn’t expire until after my baby would be born and die, I arrived home with a renewed energy and focus.
At about 2:00 p.m. that day, I received a phone call from my husband. He had boarded his flight and waited about 1 hour on the runway to take off. The fog was so bad in Phoenix, however, that they had to postpone the flight for several hours. The plane literally deboarded the passengers. My husband travels a lot for business and never in his many years of flying has he ever deboarded a plane - and to deboard for FOG in the desert! Things were really strange today. My husband cancelled his trip that day as he would miss the afternoon meeting he had planned to attend. I was so happy to hear he would be home that evening.
Incredibly, at about 11:30 p.m. that same evening, my water suddenly broke (35 1/2 weeks gestation). We called my parents to come stay with the kids and my husband and I left for the hospital. Our adrenaline was high and are emotions ranged from fear, sadness, longing to finally hold our baby, and confusion. We arrived at the hospital about 12:45 a.m., my doctor examined me in triage, checked position of the baby via ultrasound, ordered an epidural for my comfort, and informed the nurse that there was no need for a FETAL MONITOR. The doctors were sure that Grace would not live—the need for monitoring was deemed unnecessary.
I labored throughout the night. In the morning, we called our priest to let him know that Grace was to be born and asked if he could come baptize her. Unfortunately, the weather had changed and our wonderful 75 year old priest was unable to make it downtown. Instead, he said many tearful prayers with us over the phone that morning. He also set-up the in-house Chaplain to baptize Grace.
With the help of pitocin, Grace Marie was born at 11:19 a.m. All eyes were on my daughter as she emerged screaming from the womb - and my first impression - Wow! She doesn’t look that unusual to me. Weighing in at 4lbs. 2 oz. - Grace was indeed a small baby. Doctors and nurses immediately took and began to access her breathing and vitals. At this time there was no less than 8 to 10 medical doctors/nurses in the room assisting. In addition, several other resident doctors and researchers were in the doorway and hallway, hoping to catch a glimpse of the “dysplasia baby”. Our nurse, who by this time had become completely empathetic to our situation, had literally forced unnecessary observers away from our room.
The doctors and nurses were busy, yet no one was saying very much. They gave Grace a little oxygen to “pink her up” and, given the fact that Grace was 5 1/2 weeks early, her respiratory wellness was no less than unbelievable. Graces’ apgars were 8 and 9. They wrapped her in a blanket and handed her to my husband and I. We joyfully embraced Grace and took lots of pictures of her.
Grace was cleaned up and while she was gone my parents and our children arrived to see Grace and to witness her baptism. Soon after, my two sister in laws arrived. The Chaplain quickly arrived and performed the most beautiful baptism of Grace right in our Labor and Delivery room. As she held Grace Marie , she proclaimed boldly that God would make Grace whole and complete as he was the “greatest Doctor of all”. We were all crying and so happy that Grace was alive long enough to be baptized. After the baptism, we took pictures of everyone holding Grace - despite the fact the we were still not expecting much more time with Grace. Everyone was so happy. We were celebrating.
About an hour later, Grace began a form of respiratory distress - "grunting". The neonatal nurse who stayed with us since her birth needed to take Grace to the NICU for evaluation. We all feared that this was the beginning of the end for our beautiful daughter. The jovial mood in our room immediately changed to sadness. Our family left saying tearful goodbyes to Grace and me and my husband headed out to talk to the neonatalogists.
The neonatalogists wanted to do a variety of tests on Grace right away. They informed us that a team of pediatric doctors were already waiting for Grace at Children's Hospital - connected to the delivering hospital by underground tunnel. We agreed to have Grace tested. My husband went with Grace to Children's Hospital. During the tests, Grace screamed so loud my husband couldn’t believe it was our little 4 lb. baby.
When they returned, the doctors took Grace back to Special care and we waited anxiously for the results of Grace’s tests. About two hours later, the head of neonatology personally called us and asked if she could meet with in our room. At about 6:30 p.m. she arrived. She excitedly told us the unbelieveable news - the X-rays indicated that Grace did not have a skeletal dysplasia (lethal or non lethal) and that her bone structure was very proportionate. They felt she was small (especially her femur bones), however they did not feel she was out of normal ranges (10th percentile for height and weight). The doctor announced also that Grace had oxygen saturation of 100% (apparently the respitory Grunting had resolved itself when Grace screamed the mucus out of her lungs during testing), she was nippling bottles well, and holding her own temperature. They had no reason to even keep her in special care and were bringing her down to our room to “room in”!
Needless to say, we were in a complete state of shock, my husband and I just hugged and cried. Family and friends were called and we cried with each one of them. Everyone was stunned by Grace and the end result of my horrible pregnancy. My husband and I spent the next two days in the hospital with Grace - we took turns just holding her, staring at her. We were so filled with happiness and thankfulness. The nurses had a baby shower to celebrate the life of Grace. On Sunday, we were discharged together -Mom and Grace went home on the same day. The memorial service we had planned for Grace was immediately changed to a celebration - A celebration of LIFE!
Grace is now 15 months and is an exuberant bundle of energy. She is walking, talking and doing all things a normal 15 month old would do. She is still a tiny little thing -16.5 lb. at one year (about 5-10%), but it has not stopped Grace one bit. She is a light to our whole family and a constant reminder that you never can lose faith even when all seems hopeless. I shudder to think of my feelings on this day had we listened to the many specialists who felt “interrupting” this pregnancy would be our best option. Would I have ever known the truth about my lovely daughter? Even if the diagnosis had been correct, the hours or even minutes holding the precious gift that God had planted in me would have been easily worth the few months of pain and suffering. Later, many people told us that seeing me carry this baby had affected their lives in ways I would never know. We are forever grateful that we listened to our hearts. Thank you for allowing me to share my story.
2007 Update
Grace Marie is now four years old and continues to be a symbol of hope and faith in our family. After the first year when Grace continuously stayed just “off the chart”, her growth has been normal in the 5-10th percentile. Her enthusiastic pediatritions predict that she will be 5’2” at adult height! Grace is extremely bright performing beyond her age, and plans to one day be a princess ballerina. She takes ballet lessons, goes to preschool, art class and enjoys her brothers/sister immensely. Her imagination keeps us all on our toes! Her story is always on my mind – A day does not go by when I ponder on her horrible diagnosis. My heart aches for the “Grace’s’ that were never brought to their natural term. As we found very little support and hope during my pregnancy, I have made it my personal mission to widely share my story. It has already been included in 2 publications including Defiant Birth that was published and released in 2006. If we can help one other with our story, we feel our goal has been fulfilled. Thank you again for allowing me to share.
(Romans 8: 28)
Not a lot to share this morning. We are waiting on the MRI to take place. Our scheduled time was at 8a.m. We have the same, wonderful nurse again today. We also have a student nurse and her "teacher nurse" with her. Sure we will be getting lots of attention. The pediatrician that came by this morning thinks we will have some answers later this afternoon. He feels like the we will know the MRI report today. He also feels like he will be able to tell us if we will go home soon or have to camp out here for a while.
Yesterday I posted some one line christian funnies. The last one said:
LIFE IS NOT ABOUT WAITING FOR THE STORM TO PASS;
IT IS LEARNING HOW TO DANCE IN THE RAIN.
I have come across this saying many, many times. Some days I feel like that is what I do, but right now, I'm choosing to wait for the storm to pass. Meemaw was enjoying getting to know people yesterday. She was telling me all about the children in the rooms beside us. I choose to keep my door closed. I'm just not wanting to hear others stories right now. I feel bad about this, I'm sure it will pass. I am working on a better attitude. Trying not to be so aggravated about the non communication issues here at UMC. Hoping to get Shelby and Connor here in Jackson tomorrow if we find out today we will be camping out here for a while. That will make things better, too. Shelby is pretty upset about this. That upsets me.
I have been reading a lot this morning. Mackynlee is sleeping. I have been trying to get my mind back focusing on positives. I want to share a true story from one of the blogs I follow. Rereading this story reminds me God is in control and He can perform miracles. HE is the Great Physician!! This is a long story, but it is true and awsome.
A Story of Grace
Sandi
My husband and I found out we were expecting our fifth child in early June 2002. My other children are son (1993), son (1995), and twins - daughter and son (1999). We were very excited about the news and everything seemed “normal” as I began the familiar symptoms of nausea, moodiness and fatigue and I silently prayed for an uneventful nine months.
During my 1st doctor’s visit, the need for prenatal testing (Chronic Villa, Amino, triple screen) was brought up by my doctor. I listened politely, but quickly informed him that I was really not interested and that I would be committed to the pregnancy regardless of any anomalies. He went on to explain to me that I do not know what I would do if I had the information and I should get it anyways. Since I continually declined testing, the doctor wanted to make sure that my ultrasound was done right at 18 weeks.
The ultrasound date came quickly (Monday, September 9, 2002) and my husband and I were excited to see our growing baby. The "routine" ultrasound seemed to be moving along o.k., although it took a very long time and the technician seemed to be taking a lot of pictures of my baby’s bones - arms, legs, feet, hands, etc. We thought this was rather odd and joked between ourselves with eye gestures and smiles. After all of the ultrasound pictures were completed, the technician then left for a long time when she returned, she began taking additional measurements of our baby’s kidneys. I immediately started to worry, but was somewhat relieved that we were not immediately referred to the staff doctor. After that, we were free to go home.
I called my doctor that afternoon, and he later called me back and announced that there were some problems with my baby. Over the phone, he told me that my amniotic fluid was very low; my baby’s bones were small; the femur bones were curved; the head was odd shaped, and the kidneys, stomach and bladder were abnormally sized. In addition, the report said that my baby’s left foot was turned - possibly ‘clubbed’. He referred me to a perinatalogist - and added that the report indicated a pregnancy which in his opinion “smelled liked chromosomal problems” especially in light of my advanced maternal age (37) and that I should keep my options open.
My husband and I quickly reacted. We were lucky enough to get an appointment with the Director of Ultrasound who is a Board Certified Perinatalogist at a well regarded research facility in our major city. The hospital and our doctor both have national reputations in handling high risk pregnancies. We were hopeful that the small local hospital that performed the 1st ultrasound was simply wrong and that the specialists here would set the record straight. My ultrasound was scheduled for Thursday am September 12th.
Our world would never be the same after that day. After an hour long ultrasound performed by a highly skilled technician, the nationally regarded perinatalogist personally came in to perform a second ultrasound (done in uncomfortable silence).
We watched in horror at the whispering between the growing team. Finally, the “curved” femurs were pointed out to my husband and I and we were then asked to wait for the doctor in the office down the hall. The doctor herself arrived about 1/2 hour later. The doctor immediately informed us of the devastating diagnosis--a Lethal type of Skeletal Dysplasia. As a result, there was no reason to mince words—“your baby will die.”
Lethal Skeletal Dysplasia, the doctor explained, is a rare form of dwarfism where not only are the child's arms and legs extremely short /malformed, but the chest cavity is very small. In these circumstances, a baby cannot sustain life for more than a few hours because the narrow chest cavity does not allow the lungs to development properly, allowing them little room to expand and provide the proper amount of oxygen necessary to sustain life. So long as the baby is attached to the mother, she will develop and grow. However, the cutting of the chord is itself the severing of the only lifeline to sustaining the child. As a result, the baby dies of respiratory distress. The options: 1) “Interruption “ of the pregnancy, or 2) continue on, with periodic monitoring of the baby’s condition and prepare for a burial shortly after the birth. We left in a pool of tears and shattered dreams.
Over the course of the next few days, my husband and I discussed our limited “options”. We felt convicted in not terminating, although we did not yet quite understand how long we should carry the baby (i.e. whether or not we should deliver early after seven months?). We counseled with friends, family, and priests. We had such a range of advise, however, one thing really hit home with us. My sister-in-law’s priest explained the confusing situation in such clear and beautiful words - “God does not value a life as a number or years (or even days) we’ve spent alive here on earth, all life is equally valuable to God, no matter how short and we can never fully understand the impact of one life on all of humanity”. It became clear to my husband and I that there really was no decision to make - God was ultimately responsible for the birth (and inevitable death) of my precious child, and to his will we commended her life.
We decided to carry our child to term and to love her for the time that she would spend with us - inside of me. As we made this decision, we embraced her sweets kicks each night; we found out the sex of our baby (something we had never done); and named her the name Grace which means an “undeserved gift” from God.
My original OB, upon receiving the ultrasound report and learning of my desires to carry to term, quickly dropped my case. He did not want to handle my prenatal care and even said that 90% of people with my diagnosis would have “made the appointment” by now. I transferred my care to the perinatal facility, who provided an entire team of specialists that would closely follow our case.
Over the next several months, I entered a fetal assessment program and had ultrasounds performed monthly to monitor my baby’s progress. Our meetings were coordinated by the Director of Genetics , who was not sensitive at all to my decision not to terminate. In fact, until 28 weeks had past (and a termination was no longer possible in our state), this topic was the focus of our monthly meetings. My husband and I stayed the course of our decision and avoided the director's attempts to shed doubt and fear. However, I must admit - It was very difficult not to be bothered by his comments and advice.
The diagnosis of our daughter’s condition was validated at each ultrasound: small femur bones (and other long bones); an easily manipulated bone structure; and a very narrow chest cavity. Her feet were always perplexing to the doctors - no one was ever quite sure what was wrong with them and this apparently was all part of the skeletal dysplasia. During one of the assessment appointments, I had a 3 dimensional ultrasound. A beautiful clear image of daughter’s face was given to my husband and I. We kept this image on the refrigerator door and it carried me through the tough times and me believing in this little life inside of me (although the GE commercials back dropped by the song ‘the first time ever I saw your face’ were simply too hard to handle). I longed for the day to hold her - even if her time alive was very short. I longed for her just the same.
The last of my six separate ultrasounds was performed on December 30, 2002. Grace’s measurements were so poor at this time that they stopped the ultrasound after measuring only one side of her body - in the exam room were the Director of Ultrasound, Director of Genetics, two neonatalogist and a technician. They all agreed that the prognosis of Lethal Skeletal Dysplasia was present and would take Grace’s life upon birth. We provided a birth plan, which stated that there would be no ventilation. Our birth plan stated that the baby was to be wrapped in a blanket and given to my husband and me after birth so that we could spend time with her - her predicted life span “4 to 6 hours”. The hospital agreed to let our 4 other children come to see their sibling on her birth day. We talked to our priest who agreed to come to the hospital to baptize the baby when she was born. The only other arrangements we had made were with the cemetery.
On January 8th, 2003, I started to have some slight cramping and other symptoms indicating that I may be going into early labor. My husband had a short trip to Arizona planned and he was leaving on the early flight the next day. I told him about my symptoms and he insisted that I call my doctor. My doctor said to come to the hospital in the morning and he could check me out. Convinced that I may be going into labor, I packed my bags and loaded them in the car. My husband rescheduled his flight to the afternoon.
On the morning of January 9th, I was hooked up to a fetal monitor and checked for dilation/effacement at the hospital. The doctor calmly stated that I had not dilated at all and my cervix didn’t appear shortened. He said that he was confident that I would not deliver until closer to my due date - February 18th. He told my husband to catch the next plane out. Relieved by the news, I drove my husband to the airport on an unusually warm and sunny January day. Feeling better than I had felt in months, I drove home and felt and unusual peace and happiness. Not that my daughter would live - but just that God would give me strength to endure what lied ahead for us. Despite mental lapses caused by such things as date on the milk that wouldn’t expire until after my baby would be born and die, I arrived home with a renewed energy and focus.
At about 2:00 p.m. that day, I received a phone call from my husband. He had boarded his flight and waited about 1 hour on the runway to take off. The fog was so bad in Phoenix, however, that they had to postpone the flight for several hours. The plane literally deboarded the passengers. My husband travels a lot for business and never in his many years of flying has he ever deboarded a plane - and to deboard for FOG in the desert! Things were really strange today. My husband cancelled his trip that day as he would miss the afternoon meeting he had planned to attend. I was so happy to hear he would be home that evening.
Incredibly, at about 11:30 p.m. that same evening, my water suddenly broke (35 1/2 weeks gestation). We called my parents to come stay with the kids and my husband and I left for the hospital. Our adrenaline was high and are emotions ranged from fear, sadness, longing to finally hold our baby, and confusion. We arrived at the hospital about 12:45 a.m., my doctor examined me in triage, checked position of the baby via ultrasound, ordered an epidural for my comfort, and informed the nurse that there was no need for a FETAL MONITOR. The doctors were sure that Grace would not live—the need for monitoring was deemed unnecessary.
I labored throughout the night. In the morning, we called our priest to let him know that Grace was to be born and asked if he could come baptize her. Unfortunately, the weather had changed and our wonderful 75 year old priest was unable to make it downtown. Instead, he said many tearful prayers with us over the phone that morning. He also set-up the in-house Chaplain to baptize Grace.
With the help of pitocin, Grace Marie was born at 11:19 a.m. All eyes were on my daughter as she emerged screaming from the womb - and my first impression - Wow! She doesn’t look that unusual to me. Weighing in at 4lbs. 2 oz. - Grace was indeed a small baby. Doctors and nurses immediately took and began to access her breathing and vitals. At this time there was no less than 8 to 10 medical doctors/nurses in the room assisting. In addition, several other resident doctors and researchers were in the doorway and hallway, hoping to catch a glimpse of the “dysplasia baby”. Our nurse, who by this time had become completely empathetic to our situation, had literally forced unnecessary observers away from our room.
The doctors and nurses were busy, yet no one was saying very much. They gave Grace a little oxygen to “pink her up” and, given the fact that Grace was 5 1/2 weeks early, her respiratory wellness was no less than unbelievable. Graces’ apgars were 8 and 9. They wrapped her in a blanket and handed her to my husband and I. We joyfully embraced Grace and took lots of pictures of her.
Grace was cleaned up and while she was gone my parents and our children arrived to see Grace and to witness her baptism. Soon after, my two sister in laws arrived. The Chaplain quickly arrived and performed the most beautiful baptism of Grace right in our Labor and Delivery room. As she held Grace Marie , she proclaimed boldly that God would make Grace whole and complete as he was the “greatest Doctor of all”. We were all crying and so happy that Grace was alive long enough to be baptized. After the baptism, we took pictures of everyone holding Grace - despite the fact the we were still not expecting much more time with Grace. Everyone was so happy. We were celebrating.
About an hour later, Grace began a form of respiratory distress - "grunting". The neonatal nurse who stayed with us since her birth needed to take Grace to the NICU for evaluation. We all feared that this was the beginning of the end for our beautiful daughter. The jovial mood in our room immediately changed to sadness. Our family left saying tearful goodbyes to Grace and me and my husband headed out to talk to the neonatalogists.
The neonatalogists wanted to do a variety of tests on Grace right away. They informed us that a team of pediatric doctors were already waiting for Grace at Children's Hospital - connected to the delivering hospital by underground tunnel. We agreed to have Grace tested. My husband went with Grace to Children's Hospital. During the tests, Grace screamed so loud my husband couldn’t believe it was our little 4 lb. baby.
When they returned, the doctors took Grace back to Special care and we waited anxiously for the results of Grace’s tests. About two hours later, the head of neonatology personally called us and asked if she could meet with in our room. At about 6:30 p.m. she arrived. She excitedly told us the unbelieveable news - the X-rays indicated that Grace did not have a skeletal dysplasia (lethal or non lethal) and that her bone structure was very proportionate. They felt she was small (especially her femur bones), however they did not feel she was out of normal ranges (10th percentile for height and weight). The doctor announced also that Grace had oxygen saturation of 100% (apparently the respitory Grunting had resolved itself when Grace screamed the mucus out of her lungs during testing), she was nippling bottles well, and holding her own temperature. They had no reason to even keep her in special care and were bringing her down to our room to “room in”!
Needless to say, we were in a complete state of shock, my husband and I just hugged and cried. Family and friends were called and we cried with each one of them. Everyone was stunned by Grace and the end result of my horrible pregnancy. My husband and I spent the next two days in the hospital with Grace - we took turns just holding her, staring at her. We were so filled with happiness and thankfulness. The nurses had a baby shower to celebrate the life of Grace. On Sunday, we were discharged together -Mom and Grace went home on the same day. The memorial service we had planned for Grace was immediately changed to a celebration - A celebration of LIFE!
Grace is now 15 months and is an exuberant bundle of energy. She is walking, talking and doing all things a normal 15 month old would do. She is still a tiny little thing -16.5 lb. at one year (about 5-10%), but it has not stopped Grace one bit. She is a light to our whole family and a constant reminder that you never can lose faith even when all seems hopeless. I shudder to think of my feelings on this day had we listened to the many specialists who felt “interrupting” this pregnancy would be our best option. Would I have ever known the truth about my lovely daughter? Even if the diagnosis had been correct, the hours or even minutes holding the precious gift that God had planted in me would have been easily worth the few months of pain and suffering. Later, many people told us that seeing me carry this baby had affected their lives in ways I would never know. We are forever grateful that we listened to our hearts. Thank you for allowing me to share my story.
2007 Update
Grace Marie is now four years old and continues to be a symbol of hope and faith in our family. After the first year when Grace continuously stayed just “off the chart”, her growth has been normal in the 5-10th percentile. Her enthusiastic pediatritions predict that she will be 5’2” at adult height! Grace is extremely bright performing beyond her age, and plans to one day be a princess ballerina. She takes ballet lessons, goes to preschool, art class and enjoys her brothers/sister immensely. Her imagination keeps us all on our toes! Her story is always on my mind – A day does not go by when I ponder on her horrible diagnosis. My heart aches for the “Grace’s’ that were never brought to their natural term. As we found very little support and hope during my pregnancy, I have made it my personal mission to widely share my story. It has already been included in 2 publications including Defiant Birth that was published and released in 2006. If we can help one other with our story, we feel our goal has been fulfilled. Thank you again for allowing me to share.
Wednesday, October 14, 2009
MRI Tomorrow
Mackynlee had an EEG today, but not an MRI. MRI will be in the morning. We really do not know anything more than before being admitted here to UMC. EEG did not show anything. Dr. Shores came by. She is our cardiologist here in Jackson. She feels like whatever is going on is neurological and is an effect of being on the heart/lung bypass machine during surgery. I do not understand because Mackynlee was fine for a period of time after surgery. Doctor says this is very unusual for a baby to act this way after this surgery. Hopefully we will find out more tomorrow.
We had a great supper tonight. Stephen Porter brought us Chili's. He and Meemaw have gone to his house for the night. She will be back in the morning.
We also enjoyed a visit from Sherry Milner today.
Thought I would share some laughs with you.
Christian One-liners
Don't let your worries get the best of you;
Remember, Moses started out as a basket case.
Some people are kind, polite, and sweet-spirited
Until you try to sit in their pews.
Many folks want to serve God,
But only as advisers.
It is easier to preach ten sermons
Than it is to live one.
The good Lord didn't create anything without a purpose,
But mosquitoes come close.
When you get to your wit's end,
You'll find God lives there.
People are funny; they want the front of the bus,
Middle of the road, And back of the church.
Opportunity may knock once,
But temptation bangs on the front door forever.
Quit griping about your church;
If it was perfect, you couldn't belong.
If a church wants a better pastor,
It only needs to pray for the one it has.
We're called to be witnesses,
Not lawyers or Judges.
God Himself doesn't propose to judge a man until he is dead.
So why should you?
Some minds are like concrete --
Thoroughly mixed up and permanently set.
Peace starts with a smile.
I don't know why some people change churches;
What difference does it make which one you stay home from?
A lot of church members singing 'Standing on the Promises'
Are just sitting on the premises.
Be ye fishers of men.
You catch 'em - He'll clean 'em.
Stop, Drop, and Roll won't work in Hell.
Coincidence is when God chooses to remain anonymous.
Don't put a question mark where God put a period.
Don't wait for 6 strong men to take you to church.
Forbidden fruits create many jams.
God doesn't call the qualified,
He qualifies the called.
God grades on the cross, not the curve.
God loves everyone,
But probably prefers 'fruits of the spirit' over 'religious nuts!'
God promises a safe landing, not a calm passage.
He who angers you, controls you!
If God is your Co-pilot, swap seats!
Prayer: Don't give God instructions, just report for duty!
The task ahead of us is never as great as the Power behind us.
The Will of God never takes you to where
the Grace of God will not protect you.
We don't change the message,
The message changes us.
You can tell how big a person is
By what it takes to discourage him.
The best mathematical equation I have ever seen:
1 cross + 3 nails = 4 given.
If this blessed you in a profound way today,
Share it with a few friends to bless them!
I bet someone else will LOVE it too.
There is no greater treasure than a good friend!
Life isn't about waiting for the storm to pass.
It's about learning to dance in the rain.
We had a great supper tonight. Stephen Porter brought us Chili's. He and Meemaw have gone to his house for the night. She will be back in the morning.
We also enjoyed a visit from Sherry Milner today.
Thought I would share some laughs with you.
Christian One-liners
Don't let your worries get the best of you;
Remember, Moses started out as a basket case.
Some people are kind, polite, and sweet-spirited
Until you try to sit in their pews.
Many folks want to serve God,
But only as advisers.
It is easier to preach ten sermons
Than it is to live one.
The good Lord didn't create anything without a purpose,
But mosquitoes come close.
When you get to your wit's end,
You'll find God lives there.
People are funny; they want the front of the bus,
Middle of the road, And back of the church.
Opportunity may knock once,
But temptation bangs on the front door forever.
Quit griping about your church;
If it was perfect, you couldn't belong.
If a church wants a better pastor,
It only needs to pray for the one it has.
We're called to be witnesses,
Not lawyers or Judges.
God Himself doesn't propose to judge a man until he is dead.
So why should you?
Some minds are like concrete --
Thoroughly mixed up and permanently set.
Peace starts with a smile.
I don't know why some people change churches;
What difference does it make which one you stay home from?
A lot of church members singing 'Standing on the Promises'
Are just sitting on the premises.
Be ye fishers of men.
You catch 'em - He'll clean 'em.
Stop, Drop, and Roll won't work in Hell.
Coincidence is when God chooses to remain anonymous.
Don't put a question mark where God put a period.
Don't wait for 6 strong men to take you to church.
Forbidden fruits create many jams.
God doesn't call the qualified,
He qualifies the called.
God grades on the cross, not the curve.
God loves everyone,
But probably prefers 'fruits of the spirit' over 'religious nuts!'
God promises a safe landing, not a calm passage.
He who angers you, controls you!
If God is your Co-pilot, swap seats!
Prayer: Don't give God instructions, just report for duty!
The task ahead of us is never as great as the Power behind us.
The Will of God never takes you to where
the Grace of God will not protect you.
We don't change the message,
The message changes us.
You can tell how big a person is
By what it takes to discourage him.
The best mathematical equation I have ever seen:
1 cross + 3 nails = 4 given.
If this blessed you in a profound way today,
Share it with a few friends to bless them!
I bet someone else will LOVE it too.
There is no greater treasure than a good friend!
Life isn't about waiting for the storm to pass.
It's about learning to dance in the rain.
MRI and EEG
Mackynlee was admitted to Blair Baston at UMC yesterday. Long story short, I am concerned about her weird episodes of eye movement and body deviating to the right, constant moaning and groaning, and issues with eating. I called to tell Dr. Shores these concerns. She insisted we get in an ambulance to get her. I thought it not necessary, but that is what we did. I enjoyed the ride, so did Mackynlee. She slept the whole way and I visited with Donna, the paramedic on the ambulance. Todd: when you talk to her tell her I enjoyed our visit.
A ct scan was performed yesterday. One doc sees the bleeding on the brain, other doc does not. We will know for sure after MRI today. Doctors here think there could be some seizure activity going on. That is contrary to what docs at CHOP say.
I know she is not her normal self. I believe she is in pain much of the time. Hopefully these docs will find out what is going on and get everything under control. I want her back to "normal."
Doctors seem very concerned. I just don't like the fact that they are nervous because she has a HISTORY of Heart problems. Attending would not okay pain med that another doc ordered because of her history. This would not be an issue with CHOP docs on the cardio floor. Hopefully after Dr. Shores, our cardio doc, visits today she will help guide these docs and help them feel more comfortable with Mackynlee.
I will update when I can and when I find out more info. Tests were scheduled for 8. It is 9:30 and we are still in our room. Who knows when we will go for tests and when we will get results. She is resting peacefully right now. Nurse just came in to say not sure when we will be going for tests. That is no surprise to me.
"And Jesus went about all
Galilee, teaching in their synagogues, and preaching the gospel
of the kingdom, and healing all manner of sickness and all manner of disease among the people."
MATTHEW 4:23
Still it is hard to understand,
Why kids have to deal with sickness;
Nothing is worse when one so young,
Succumbs to an evil illness.
Why a young one should go through pain,
Doesn’t make any sense to me;
Yet they still smile and they play,
Making it plain for all to see.
They know that God is ever present,
They have true faith in the Lord above;
They will deal with their situations,
With help from their Lord’s guidance and love.
There may be a special friend involved,
Maybe a sweet blonde named Ginger;
Who'll pamper and spoil them rotten,
Could be a bright Golden Retriever.
She could act as their arms or their legs,
Could be that she even sees for them;
Wake them up for school in the morning,
And might cater to their every whim.
God does work in mysterious ways,
He gives them His love that's unending;
Must have been God that sent me this message,
So a prayer request for them I am sending.
A request to everyone that I know,
As well as to all who write in the Den;
Let’s all include these kids in our prayers,
And to Gingers who may be Heaven sent.
“Dear Lord, You are so kind and merciful,
We place all our faith and trust up above;
Watch over these children and their close friends,
And grant them a miracle through Your love.
We know that whatever You do,
It will be what is best for them;
You know so much better than we,
And You will make them well in the end.”
Lord, you love our child as You love all children,
Bring healing to Mackynlee who is not well.
Stay by her side and comfort her through this trying time.
Keep us ever mindful of Your loving presence
Bless us with Your powerful healing and comfort us also.
Thank You for hearing our prayer!
CONTINUE PRAYING FOR MIKE THORNHILL. HE IS NOT DOING WELL AT THIS TIME, BUT GOD STILL PERFORMS MIRACLES.
PRAY FOR MY FRIEND RHONDA PITTMAN. SHE HAS BREAST CANCER. SHE WILL BE HAVING SURGERY SOON AND CHEMO. POSSIBLY RADIATION.
A ct scan was performed yesterday. One doc sees the bleeding on the brain, other doc does not. We will know for sure after MRI today. Doctors here think there could be some seizure activity going on. That is contrary to what docs at CHOP say.
I know she is not her normal self. I believe she is in pain much of the time. Hopefully these docs will find out what is going on and get everything under control. I want her back to "normal."
Doctors seem very concerned. I just don't like the fact that they are nervous because she has a HISTORY of Heart problems. Attending would not okay pain med that another doc ordered because of her history. This would not be an issue with CHOP docs on the cardio floor. Hopefully after Dr. Shores, our cardio doc, visits today she will help guide these docs and help them feel more comfortable with Mackynlee.
I will update when I can and when I find out more info. Tests were scheduled for 8. It is 9:30 and we are still in our room. Who knows when we will go for tests and when we will get results. She is resting peacefully right now. Nurse just came in to say not sure when we will be going for tests. That is no surprise to me.
"And Jesus went about all
Galilee, teaching in their synagogues, and preaching the gospel
of the kingdom, and healing all manner of sickness and all manner of disease among the people."
MATTHEW 4:23
Still it is hard to understand,
Why kids have to deal with sickness;
Nothing is worse when one so young,
Succumbs to an evil illness.
Why a young one should go through pain,
Doesn’t make any sense to me;
Yet they still smile and they play,
Making it plain for all to see.
They know that God is ever present,
They have true faith in the Lord above;
They will deal with their situations,
With help from their Lord’s guidance and love.
There may be a special friend involved,
Maybe a sweet blonde named Ginger;
Who'll pamper and spoil them rotten,
Could be a bright Golden Retriever.
She could act as their arms or their legs,
Could be that she even sees for them;
Wake them up for school in the morning,
And might cater to their every whim.
God does work in mysterious ways,
He gives them His love that's unending;
Must have been God that sent me this message,
So a prayer request for them I am sending.
A request to everyone that I know,
As well as to all who write in the Den;
Let’s all include these kids in our prayers,
And to Gingers who may be Heaven sent.
“Dear Lord, You are so kind and merciful,
We place all our faith and trust up above;
Watch over these children and their close friends,
And grant them a miracle through Your love.
We know that whatever You do,
It will be what is best for them;
You know so much better than we,
And You will make them well in the end.”
Lord, you love our child as You love all children,
Bring healing to Mackynlee who is not well.
Stay by her side and comfort her through this trying time.
Keep us ever mindful of Your loving presence
Bless us with Your powerful healing and comfort us also.
Thank You for hearing our prayer!
CONTINUE PRAYING FOR MIKE THORNHILL. HE IS NOT DOING WELL AT THIS TIME, BUT GOD STILL PERFORMS MIRACLES.
PRAY FOR MY FRIEND RHONDA PITTMAN. SHE HAS BREAST CANCER. SHE WILL BE HAVING SURGERY SOON AND CHEMO. POSSIBLY RADIATION.
Thursday, October 8, 2009
Mississippi Bound
“We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation”
(Romans 5:3-4, NLT).
Difficult times have helped me to understand better than before, how infinitely rich and beautiful life is in every way, and that so many things that one goes worrying about are of no importance whatsoever...-- Isak Dinesen
Mackynlee and I will be headed home on a commercial flight tomorrow. Our angel flight did not work out. Walter, the social worker, stood on his head this evening when we found out the angel flight wasn't working out. (WMP READERS: Walter is a black, male version of Martha Woods. Gotta love him!) He, and the doctors worked quickly to get all of the paperwork ready for the oxygen company and the airline. All is set to go. Just praying our oxygen will arrive here at CHOP in the morning. It is being overnighted to us. Also, pray I can figure out how to use it. If you get no post from me, we are on our way home. If things don't work out, I will relieve my stress through posting an update. CAUTION: It may not be a nice update. I'll try to keep my cool, but three weeks here is long enough for me. I love MS. I want to see Shelby and Connor badly!!
I want to end tonight (sounds like I'm preaching LOL) with this story. I want to dedicate it to my friends that I will be leaving here at CHOP. Coleen, (mom of two month old heart baby), Mike and Nichol (parents of Allie), Diane (mom of Lillian Grace), and a mom we had dinner with tonight at McDonalds. I never got her name, but she and her 4 year old, Cordelia invited Mackynlee and I to sit with them. I did not recognize her, but she recognized me. We met here on the cardiac floor at the beginning of our time here. Her 4 year old has down syndrome. She is recovering from heart surgery. She will be having brain surgery soon. The reason I did have not seen the mom is because she had a heart transplant about a year ago. She has been hospitalized herself during Cordelia's hospital stay, so she has not been able to be here. Her body had gone into rejection. I think God sent them to me to say "Hey life could be worse. It is not so bad after all."
Pray for Coleen. I do not think it is going well for her baby boy. They have been here since he has been born. To make things worse, she is a cardiac nurse herself. So, you can only imagine how hard it would be to actually understand all of the foreign language from the doctors.
Please pray Diane and Lillian will get to go home to Wisconsin soo.
Pray Mike and Nichol will get to take Allie home to be with her twin sister and twin brothers that are two. It is so difficult when a family has to be a part(especially under these not so good circumstances.)
Pray Cordelia will recover and go through her brain surgery like a champ!! She is precious. She loved Mackynlee.
"Lunch With God"
- author unknown -
A little boy wanted to meet God. He knew it was a long trip to where God lived, so he packed his suitcase with Twinkies and a six-pack of Root Beer and he started his journey.
When he had gone about three blocks, he met an elderly man. The man was sitting in the park just feeding some pigeons.
The boy sat down next to him and opened his suitcase. He was about to take a drink from his root beer when he noticed that the man looked hungry, so he offered him a Twinkie.
The man gratefully accepted it and smiled at boy. His smile was so pleasant that the boy wanted to see it again, so he offered him a root beer.
Again, the man smiled at him. The boy was delighted! They sat there all afternoon eating and smiling, but they never said a word.
As it grew dark, the boy realized how tired he was and he got up to leave, but before he had gone more than a few steps, he turned around, ran back to the man, and gave him a hug. The man gave him his biggest smile ever.
When the boy opened the door to his own house a short time later, his mother was surprised by the look of joy on his face. She asked him, "What did you do today that made you so happy?
"He replied, "I had lunch with God." But before his mother could respond, he added, "You know what? God's got the most beautiful smile I've ever seen!"
Meanwhile, the elderly man, also radiant with joy, returned to his home. His son was stunned by the look of peace on his face and he asked," Dad, what did you do today that made you so happy?"
He replied, "I ate Twinkies in the park with God." However, before his son responded, he added," You know, he's much younger than I expected."
Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. People come into our lives for a reason, a season, or a lifetime. Embrace all equally!
(Romans 5:3-4, NLT).
Difficult times have helped me to understand better than before, how infinitely rich and beautiful life is in every way, and that so many things that one goes worrying about are of no importance whatsoever...-- Isak Dinesen
Mackynlee and I will be headed home on a commercial flight tomorrow. Our angel flight did not work out. Walter, the social worker, stood on his head this evening when we found out the angel flight wasn't working out. (WMP READERS: Walter is a black, male version of Martha Woods. Gotta love him!) He, and the doctors worked quickly to get all of the paperwork ready for the oxygen company and the airline. All is set to go. Just praying our oxygen will arrive here at CHOP in the morning. It is being overnighted to us. Also, pray I can figure out how to use it. If you get no post from me, we are on our way home. If things don't work out, I will relieve my stress through posting an update. CAUTION: It may not be a nice update. I'll try to keep my cool, but three weeks here is long enough for me. I love MS. I want to see Shelby and Connor badly!!
I want to end tonight (sounds like I'm preaching LOL) with this story. I want to dedicate it to my friends that I will be leaving here at CHOP. Coleen, (mom of two month old heart baby), Mike and Nichol (parents of Allie), Diane (mom of Lillian Grace), and a mom we had dinner with tonight at McDonalds. I never got her name, but she and her 4 year old, Cordelia invited Mackynlee and I to sit with them. I did not recognize her, but she recognized me. We met here on the cardiac floor at the beginning of our time here. Her 4 year old has down syndrome. She is recovering from heart surgery. She will be having brain surgery soon. The reason I did have not seen the mom is because she had a heart transplant about a year ago. She has been hospitalized herself during Cordelia's hospital stay, so she has not been able to be here. Her body had gone into rejection. I think God sent them to me to say "Hey life could be worse. It is not so bad after all."
Pray for Coleen. I do not think it is going well for her baby boy. They have been here since he has been born. To make things worse, she is a cardiac nurse herself. So, you can only imagine how hard it would be to actually understand all of the foreign language from the doctors.
Please pray Diane and Lillian will get to go home to Wisconsin soo.
Pray Mike and Nichol will get to take Allie home to be with her twin sister and twin brothers that are two. It is so difficult when a family has to be a part(especially under these not so good circumstances.)
Pray Cordelia will recover and go through her brain surgery like a champ!! She is precious. She loved Mackynlee.
"Lunch With God"
- author unknown -
A little boy wanted to meet God. He knew it was a long trip to where God lived, so he packed his suitcase with Twinkies and a six-pack of Root Beer and he started his journey.
When he had gone about three blocks, he met an elderly man. The man was sitting in the park just feeding some pigeons.
The boy sat down next to him and opened his suitcase. He was about to take a drink from his root beer when he noticed that the man looked hungry, so he offered him a Twinkie.
The man gratefully accepted it and smiled at boy. His smile was so pleasant that the boy wanted to see it again, so he offered him a root beer.
Again, the man smiled at him. The boy was delighted! They sat there all afternoon eating and smiling, but they never said a word.
As it grew dark, the boy realized how tired he was and he got up to leave, but before he had gone more than a few steps, he turned around, ran back to the man, and gave him a hug. The man gave him his biggest smile ever.
When the boy opened the door to his own house a short time later, his mother was surprised by the look of joy on his face. She asked him, "What did you do today that made you so happy?
"He replied, "I had lunch with God." But before his mother could respond, he added, "You know what? God's got the most beautiful smile I've ever seen!"
Meanwhile, the elderly man, also radiant with joy, returned to his home. His son was stunned by the look of peace on his face and he asked," Dad, what did you do today that made you so happy?"
He replied, "I ate Twinkies in the park with God." However, before his son responded, he added," You know, he's much younger than I expected."
Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. People come into our lives for a reason, a season, or a lifetime. Embrace all equally!
Still Good
This is what I started typing yesterday, but I never got it posted.
Mackynlee slept so peacefully last night. She has also rested a good bit today. (I have too.) She has become more and more alert. Her eyes are looking more and more normal. Today she would actually look at people when they would enter the room. She has been watching me move around the room. She did not seem to be bothered with the lights in the hallway at all tonight. We sat in the hallway for long periods of time and she would just look around. Her eyes have only looked funny a few times today, and that has been for short periods of time.
Same news today. We both rested very good last night. This morning she has been making the weird movement with her eyes. She also pulls her head back and to the right. Doctors say this will go away. Praying it will.
She has actually been saying Ma quite a bit. NANANANABOOBOO: Dada!! She is also smiling at me. I have seen very few smiles from her since Saturday.
Right now I am waiting patiently on details about when our angel flight will be bringing us to MS.
I have come across this story numerous times. I decided to share it with you. Many have said to me how they hate that I am still here at the hospital, etc. I have shared sorrows and laughter with two other heart moms this week. Although I am so ready to come home, I will miss both of them so much. I would much prefer being home with Shelby and Connor, but I have made the best of my time here. We do have to look for the good in all of life's not so good situations. I have enjoyed every minute of my time with Diane and Nichol. Keep these two ladies, their families, and their babies in your prayers. Here's the story.
A Room With a View
Two men, both seriously ill, occupied the same hospital room. One man was allowed to sit up in his bed for an hour each afternoon to help drain the fluid from his lungs. His bed was next to the room's only window. The other man had to spend all his time flat on his back. The men talked for hours on end. They spoke of their wives and families, their homes, their jobs, their involvement in the military service, where they had been on vacation. And every afternoon when the man in the bed by the window could sit up, he would pass the time by describing to his roommate all the things he could see outside the window. The man in the other bed began to live for those one-hour periods where his world would be broadened and enlivened by all the activity and color of the world outside.
The window overlooked a park with a lovely lake. Ducks and swans played on the water while children sailed their model boats. Young lovers walked arm in arm amidst flowers of every color of the rainbow. Grand old trees graced the landscape, and a fine view of the city skyline could be seen in the distance. As the man by the window described all this in exquisite detail, the man on the other side of the room would close his eyes and imagine the picturesque scene.
One warm afternoon the man by the window described a parade passing by. Although the other man couldn't hear the band - he could see it in his mind's eye as the gentleman by the window portrayed it with descriptive words. Days and weeks passed. One morning, the day nurse arrived to bring water for their baths only to find the lifeless body of the man by the window, who had died peacefully in his sleep. She was saddened and called the hospital attendants to take the body away.
As soon as it seemed appropriate, the other man asked if he could be moved next to the window. The nurse was happy to make the switch, and after making sure he was comfortable, she left him alone. Slowly, painfully, he propped himself up on one elbow to take his first look at the world outside. Finally, he would have the joy of seeing it for himself. He strained to slowly turn to look out the window beside the bed. It faced a blank wall.
The man asked the nurse what could have compelled his deceased roommate who had described such wonderful things outside this window. The nurse responded that the man was blind and could not even see the wall. She said, "Perhaps he just wanted to encourage you."
Epilogue...
There is tremendous happiness in making others happy, despite our own situations. Shared grief is half the sorrow, but happiness when shared, is doubled. If you want to feel rich, just count all of the things you have that money can't buy.
MONEY CANNOT BUY THE RELATIONSHIP I HAVE MADE WITH NICHOL AND DIANE IN THESE PAST FEW WEEKS!! I AM SO BLESSED TO KNOW THEM!
Psalm 121:7-8
The LORD will keep you from all harm— he will watch over your life; the LORD will watch over your coming and going both now and forevermore.
Mackynlee slept so peacefully last night. She has also rested a good bit today. (I have too.) She has become more and more alert. Her eyes are looking more and more normal. Today she would actually look at people when they would enter the room. She has been watching me move around the room. She did not seem to be bothered with the lights in the hallway at all tonight. We sat in the hallway for long periods of time and she would just look around. Her eyes have only looked funny a few times today, and that has been for short periods of time.
Same news today. We both rested very good last night. This morning she has been making the weird movement with her eyes. She also pulls her head back and to the right. Doctors say this will go away. Praying it will.
She has actually been saying Ma quite a bit. NANANANABOOBOO: Dada!! She is also smiling at me. I have seen very few smiles from her since Saturday.
Right now I am waiting patiently on details about when our angel flight will be bringing us to MS.
I have come across this story numerous times. I decided to share it with you. Many have said to me how they hate that I am still here at the hospital, etc. I have shared sorrows and laughter with two other heart moms this week. Although I am so ready to come home, I will miss both of them so much. I would much prefer being home with Shelby and Connor, but I have made the best of my time here. We do have to look for the good in all of life's not so good situations. I have enjoyed every minute of my time with Diane and Nichol. Keep these two ladies, their families, and their babies in your prayers. Here's the story.
A Room With a View
Two men, both seriously ill, occupied the same hospital room. One man was allowed to sit up in his bed for an hour each afternoon to help drain the fluid from his lungs. His bed was next to the room's only window. The other man had to spend all his time flat on his back. The men talked for hours on end. They spoke of their wives and families, their homes, their jobs, their involvement in the military service, where they had been on vacation. And every afternoon when the man in the bed by the window could sit up, he would pass the time by describing to his roommate all the things he could see outside the window. The man in the other bed began to live for those one-hour periods where his world would be broadened and enlivened by all the activity and color of the world outside.
The window overlooked a park with a lovely lake. Ducks and swans played on the water while children sailed their model boats. Young lovers walked arm in arm amidst flowers of every color of the rainbow. Grand old trees graced the landscape, and a fine view of the city skyline could be seen in the distance. As the man by the window described all this in exquisite detail, the man on the other side of the room would close his eyes and imagine the picturesque scene.
One warm afternoon the man by the window described a parade passing by. Although the other man couldn't hear the band - he could see it in his mind's eye as the gentleman by the window portrayed it with descriptive words. Days and weeks passed. One morning, the day nurse arrived to bring water for their baths only to find the lifeless body of the man by the window, who had died peacefully in his sleep. She was saddened and called the hospital attendants to take the body away.
As soon as it seemed appropriate, the other man asked if he could be moved next to the window. The nurse was happy to make the switch, and after making sure he was comfortable, she left him alone. Slowly, painfully, he propped himself up on one elbow to take his first look at the world outside. Finally, he would have the joy of seeing it for himself. He strained to slowly turn to look out the window beside the bed. It faced a blank wall.
The man asked the nurse what could have compelled his deceased roommate who had described such wonderful things outside this window. The nurse responded that the man was blind and could not even see the wall. She said, "Perhaps he just wanted to encourage you."
Epilogue...
There is tremendous happiness in making others happy, despite our own situations. Shared grief is half the sorrow, but happiness when shared, is doubled. If you want to feel rich, just count all of the things you have that money can't buy.
MONEY CANNOT BUY THE RELATIONSHIP I HAVE MADE WITH NICHOL AND DIANE IN THESE PAST FEW WEEKS!! I AM SO BLESSED TO KNOW THEM!
Psalm 121:7-8
The LORD will keep you from all harm— he will watch over your life; the LORD will watch over your coming and going both now and forevermore.
Tuesday, October 6, 2009
Home Friday?
This mornings MRI did find a bleed in her head. It is between the skull and her brain; in between the large part of the brain and the small part of the brain. Not sure why this happened, possibly because of pain and tension during and after removal of the drainage tube Saturday. Doctors also feel like this pain and tension may have caused her fever to spike. You know when we are in enough pain, our bodies can do weird things. The doctors here say Mackynlee has taught them something they have never seen before. All are going to remember this in case another baby/child does the same thing. I guess Miss Mackynlee wanted to leave a legacy here at CHOP.
Both the neurology team and the cardiology team are agreeing on discharging us Friday, unless we go backwards. Talking with Walter about the angel flight in a few minutes.
Boy, the neurologists know bigger words than the cardiologists. It is so amazing!!
I forgot to tell everyone that while Mackynlee was in the CICU, she won several awards. 1)Prettiest bed award 2)Prettiest baby award and 3)Best personality award!! LOL.....
Father, before the mountains were born or You brought forth the earth and the world, from everlasting to everlasting You are God. You care for all of creation, the order of the universe, all people from past generations to the present, and You work powerfully and invisibly in our hearts. We are humbled by Your greatness and touched by Your kindness. We give You thanks and trust You for that which we don’t understand. We see only the fringes of Your ways, but that reminds us that Your power is what creates the works established by Your hands. You are our God, the rock in whom we trust and take refuge. Amen.
In every thing give thanks: for this is the will of God in Christ Jesus concerning you.
~ 1 Thessalonians 5:18 ~
I would also like to thank each and every one of you that know us and those who do not know us. We appreciate all of the time you have taken out of your life to keep up with our journey, and shower us with prayers. I love the following story that I want to share with you. We should all take it to heart.
Thanks for Your Time
Author Unknown
It had been some time since Jack had seen the old man. College, girls, career, and life itself got in the way. In fact, Jack moved clear across the country in pursuit of his dreams. There, in the rush of his busy life, Jack had little time to think about the past and often no time to spend with his wife and son. He was working on his future, and nothing could stop him.
Over the phone, his mother told him, "Mr. Belser died last night. The funeral is Wednesday."
Memories flashed through his mind like an old newsreel as he sat quietly remembering his childhood days.
"Jack, did you hear me?"
"Oh sorry, Mom. Yes, I heard you. It's been so long since I thought of him. I'm sorry, but I honestly thought he died years ago," Jack said.
"Well, he didn't forget you. Every time I saw him he'd ask how you were doing. He'd reminisce about the many days you spent over 'his side of the fence' as he put it," Mom told him.
"I loved that old house he lived in," Jack said.
"You know, Jack, after your father died, Mr. Belser stepped in to make sure you had a man's influence in your life," she said.
"He's the one who taught me carpentry," he said. "I wouldn't be in this business if it weren't for him. He spent a lot of time teaching me things he thought were important... Mom, I'll be there for the funeral," Jack said.
As busy as he was, he kept his word. Jack caught the next flight to his hometown. Mr. Belser's funeral was small and uneventful. He had no children of his own, and most of his relatives had passed away.
The night before he had to return home, Jack and his Mom stopped by to see the old house next door one more time.
Standing in the doorway, Jack paused for a moment. It was like crossing over into another dimension, a leap through space and time.
The house was exactly as he remembered. Every step held memories. Every picture, every piece of furniture... Jack stopped suddenly.
"What's wrong, Jack?" his Mom asked.
"The box is gone," he said.
"What box?" Mom asked.
"There was a small gold box that he kept locked on top of his desk. I must have asked him a thousand times what was inside. All he'd ever tell me was 'the thing I value most,'" Jack said.
It was gone. Everything about the house was exactly how Jack remembered it, except for the box. He figured someone from the Belser family had taken it.
"Now I'll never know what was so valuable to him," Jack said. "I better get some sleep. I have an early flight home, Mom."
It had been about two weeks since Mr. Belser died. Returning home from work one day Jack discovered a note in his mailbox. "Signature required on a package. No one at home. Please stop by the main post office within the next three days," the note read.
Early the next day Jack retrieved the package. The small box was old and looked like it had been mailed a hundred years ago. The handwriting was difficult to read, but the return address caught his attention.
"Mr. Harold Belser" it read.
Jack took the box out to his car and ripped open the package. There inside was the gold box and an envelope. Jack's hands shook as he read the note inside.
"Upon my death, please forward this box and its contents to Jack Bennett. It's the thing I valued most in my life." A small key was taped to the letter. His heart racing, as tears filling his eyes, Jack carefully unlocked the box. There inside he found a beautiful gold pocket watch.
Running his fingers slowly over the finely etched casing, he unlatched the cover. Inside he found these words engraved:
"Jack, Thanks for your time! -Harold Belser."
"The thing he valued most...was...my time."
Jack held the watch for a few minutes, then called his office and cleared his appointments for the next two days. "Why?" Janet, his assistant asked.
"I need some time to spend with my son," he said. "Oh, by the way, Janet... thanks for your time!"
Both the neurology team and the cardiology team are agreeing on discharging us Friday, unless we go backwards. Talking with Walter about the angel flight in a few minutes.
Boy, the neurologists know bigger words than the cardiologists. It is so amazing!!
I forgot to tell everyone that while Mackynlee was in the CICU, she won several awards. 1)Prettiest bed award 2)Prettiest baby award and 3)Best personality award!! LOL.....
Father, before the mountains were born or You brought forth the earth and the world, from everlasting to everlasting You are God. You care for all of creation, the order of the universe, all people from past generations to the present, and You work powerfully and invisibly in our hearts. We are humbled by Your greatness and touched by Your kindness. We give You thanks and trust You for that which we don’t understand. We see only the fringes of Your ways, but that reminds us that Your power is what creates the works established by Your hands. You are our God, the rock in whom we trust and take refuge. Amen.
In every thing give thanks: for this is the will of God in Christ Jesus concerning you.
~ 1 Thessalonians 5:18 ~
I would also like to thank each and every one of you that know us and those who do not know us. We appreciate all of the time you have taken out of your life to keep up with our journey, and shower us with prayers. I love the following story that I want to share with you. We should all take it to heart.
Thanks for Your Time
Author Unknown
It had been some time since Jack had seen the old man. College, girls, career, and life itself got in the way. In fact, Jack moved clear across the country in pursuit of his dreams. There, in the rush of his busy life, Jack had little time to think about the past and often no time to spend with his wife and son. He was working on his future, and nothing could stop him.
Over the phone, his mother told him, "Mr. Belser died last night. The funeral is Wednesday."
Memories flashed through his mind like an old newsreel as he sat quietly remembering his childhood days.
"Jack, did you hear me?"
"Oh sorry, Mom. Yes, I heard you. It's been so long since I thought of him. I'm sorry, but I honestly thought he died years ago," Jack said.
"Well, he didn't forget you. Every time I saw him he'd ask how you were doing. He'd reminisce about the many days you spent over 'his side of the fence' as he put it," Mom told him.
"I loved that old house he lived in," Jack said.
"You know, Jack, after your father died, Mr. Belser stepped in to make sure you had a man's influence in your life," she said.
"He's the one who taught me carpentry," he said. "I wouldn't be in this business if it weren't for him. He spent a lot of time teaching me things he thought were important... Mom, I'll be there for the funeral," Jack said.
As busy as he was, he kept his word. Jack caught the next flight to his hometown. Mr. Belser's funeral was small and uneventful. He had no children of his own, and most of his relatives had passed away.
The night before he had to return home, Jack and his Mom stopped by to see the old house next door one more time.
Standing in the doorway, Jack paused for a moment. It was like crossing over into another dimension, a leap through space and time.
The house was exactly as he remembered. Every step held memories. Every picture, every piece of furniture... Jack stopped suddenly.
"What's wrong, Jack?" his Mom asked.
"The box is gone," he said.
"What box?" Mom asked.
"There was a small gold box that he kept locked on top of his desk. I must have asked him a thousand times what was inside. All he'd ever tell me was 'the thing I value most,'" Jack said.
It was gone. Everything about the house was exactly how Jack remembered it, except for the box. He figured someone from the Belser family had taken it.
"Now I'll never know what was so valuable to him," Jack said. "I better get some sleep. I have an early flight home, Mom."
It had been about two weeks since Mr. Belser died. Returning home from work one day Jack discovered a note in his mailbox. "Signature required on a package. No one at home. Please stop by the main post office within the next three days," the note read.
Early the next day Jack retrieved the package. The small box was old and looked like it had been mailed a hundred years ago. The handwriting was difficult to read, but the return address caught his attention.
"Mr. Harold Belser" it read.
Jack took the box out to his car and ripped open the package. There inside was the gold box and an envelope. Jack's hands shook as he read the note inside.
"Upon my death, please forward this box and its contents to Jack Bennett. It's the thing I valued most in my life." A small key was taped to the letter. His heart racing, as tears filling his eyes, Jack carefully unlocked the box. There inside he found a beautiful gold pocket watch.
Running his fingers slowly over the finely etched casing, he unlatched the cover. Inside he found these words engraved:
"Jack, Thanks for your time! -Harold Belser."
"The thing he valued most...was...my time."
Jack held the watch for a few minutes, then called his office and cleared his appointments for the next two days. "Why?" Janet, his assistant asked.
"I need some time to spend with my son," he said. "Oh, by the way, Janet... thanks for your time!"
Monday, October 5, 2009
MRI
Mackynlee has been scheduled for an MRI in the morning. 6:30 PA time, 5:30 MS time. She will be sedated and extubated during this procedure. The MRI is of her brain. They are looking for signs of a stroke, seizures, pressures, etc. Neurologists were concerned today because her eyes roll back and to the right side. They do not move to the left when she is having an "episode". Also, there was concern because Mackynlee has been favoring her right side. She likes to look that way and lay that way. Well, her IV blew this afternoon, it is now in the right hand and she is favoring her left side. So, long story short, I think she is smarter than we all realize and the reason she was favoring a side is because of comfort.
The nurse and I now feel that nothing will be found. We have come to the conclusion, because Mackynlee has done so well this evening that the weird behaviors(? spelling, sorry) have just been because of pain and exhaustion. Today there has been longer periods where she acts her normal self and shorter times that she doesn't act like Mackynlee. I even dressed her today. (Karen and Lauren: I put her on the pink heart outfit you brought her. It looked beautiful on her. I wanted to take a pic to post, but she had a bad diaper and it got all over the outfit. It is being washed now. We'll put it on again soon. LOL) She and I took a stroller ride and she loved it.
Her eating is getting better. Her heart rate is dropping quite a bit while she is resting, but it goes right back up. Doctors and nurses think it is doing this because she is finally getting into periods of deep sleep.
One of the nurses that were here Saturday night, came by to check on us a little bit ago. She commended me on an excellent job. She said she would have gone postal if that would have been her baby in that shape. She said I had so much patience, and when it went away, it was time to go away and demand something be done to help Mackynlee. That made me feel so good to hear.
Game Plan: If nothing is found during the MRI tomorrow and we should know something by tomorrow evening or early Wed morning, and if she continues eating well, we may get to come home sooner than later. Now I really do not know when sooner is, that is just the game plan that the charge nurse shared with me.
Our friends from Wisconsin may get to go home this week!! I am so happy for them. They have been here since Sept. 10th.
Mike and Nichol's baby Allie is still having good days and bad days. Today has been a great day for them. She has finally been taken off of the vent. Allie had surgery the same day as Mackynlee.
What God Hath Promised
Annie Johnson Flint
God hath not promised
Skies always blue,
Flower-strewn pathways
All our lives through;
God hath not promised
Sun without rain,
Joy without sorrow,
Peace without pain.
But God hath promised
Strength for the day,
Rest for the labour,
Light for the way,
Grace for the trials,
Help from above,
Unfailing sympathy,
Undying love.
The nurse and I now feel that nothing will be found. We have come to the conclusion, because Mackynlee has done so well this evening that the weird behaviors(? spelling, sorry) have just been because of pain and exhaustion. Today there has been longer periods where she acts her normal self and shorter times that she doesn't act like Mackynlee. I even dressed her today. (Karen and Lauren: I put her on the pink heart outfit you brought her. It looked beautiful on her. I wanted to take a pic to post, but she had a bad diaper and it got all over the outfit. It is being washed now. We'll put it on again soon. LOL) She and I took a stroller ride and she loved it.
Her eating is getting better. Her heart rate is dropping quite a bit while she is resting, but it goes right back up. Doctors and nurses think it is doing this because she is finally getting into periods of deep sleep.
One of the nurses that were here Saturday night, came by to check on us a little bit ago. She commended me on an excellent job. She said she would have gone postal if that would have been her baby in that shape. She said I had so much patience, and when it went away, it was time to go away and demand something be done to help Mackynlee. That made me feel so good to hear.
Game Plan: If nothing is found during the MRI tomorrow and we should know something by tomorrow evening or early Wed morning, and if she continues eating well, we may get to come home sooner than later. Now I really do not know when sooner is, that is just the game plan that the charge nurse shared with me.
Our friends from Wisconsin may get to go home this week!! I am so happy for them. They have been here since Sept. 10th.
Mike and Nichol's baby Allie is still having good days and bad days. Today has been a great day for them. She has finally been taken off of the vent. Allie had surgery the same day as Mackynlee.
What God Hath Promised
Annie Johnson Flint
God hath not promised
Skies always blue,
Flower-strewn pathways
All our lives through;
God hath not promised
Sun without rain,
Joy without sorrow,
Peace without pain.
But God hath promised
Strength for the day,
Rest for the labour,
Light for the way,
Grace for the trials,
Help from above,
Unfailing sympathy,
Undying love.
Friday, October 2, 2009
CHD Awareness
I copied and pasted this from www.thelittleheartthatcould.blogspot.com. Sorry I waited til the day before to post it. Even if you cannot participate, read the facts about CHD's posted below.
CHD Awareness Balloon Luanch
It's time to spread the word.
I'd like to invite EVERYONE EVERYWHERE to join in and launch as many balloons as possible on Sat. Oct. 3rd. On each balloon you can attach a card, found below, giving facts about CHDs. Visit a dollare store near you and purchase as many balloons as you'd like! Print and attach your cards and launch away!!! (Please feel free to copy and paste, add or delete any information found on the card.) Hopefully this valuable information will provide some awareness of CHDs. Please feel free to tell your friends, family, and carepage families.
Congenital Heart DefectsTell someone you love about Congenital Heart Defects!
~CHD's are the most common birth defect in America~1 in 100 children (40,000 newborns a year) will be born with some type of heart defect
~CHD's are responsible for 1/3 of all birth defect related deaths
~20 percent of children who make it through birth will not survive past their first birthday
~Although a child is born every 15 minutes with a CHD, research continues to be grossly under-funded in America
~Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research
~There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them~There is no known prevention or cure for any of them
~More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime
~The cost for inpatient surgery to repair CHDs exceeds $2.2 billion a year
~CHD is the leading cause of infant death in the US and in every country around the world
Support the Children’s Heart Foundation
Gives me chills everytime I read those facts about CHDs. So glad Trisha is getting out there and spreading the word. She is a strong, Godly woman who has been through a lot this year.
News on Mackynlee: We are out of the pod! YAY!! Still have our chest tube. BOOOOOO. Doctor wants chest tube to stay in one more day. We have had a crazy morning. The new baby in our pod went into cardiac arrest two times within 30 minutes this morning. The first time I wasn't kicked out because I was feeding Mackynlee. The second time I was kicked out. I heard them request some kind of surgical something. Keep this family in your prayers. He is a new baby here at CHOP, not even had surgery yet. Mackynlee and I got comfy in the rocking chair, then the person came to get blood work. Then we got comfy again, and Mackynlee projectile volmitted her formula. That's what the nurses get for not giving her a bath before now. She needed one so bad. She enjoyed every minute of it. I will post pics of it in a little. We were picking about it saying she was getting a spa treatment. There were three of us bathing her. Now I am praying she can rest. She is so tired, her eyes are blood shot. She cannot sleep for long periods of time in the pod, but now that we are in the room, maybe we will both sleep. The nurse has turned off the buzzers on our monitor. We have the bubbling of our chest tube, and the bubbling of the other baby's chest tube behind us. It is about to put me to sleep. The only problem, and I don't want this to sound mean, the baby behind the curtain sounds like she's gurgling/volmitting. Respiratory is in there and I don't know what kind of problem she could be having, but it sounds disgusting. Great, now the dad just walked in, he is noisy. Pray Baby Mackynlee gets more than a ten minute nap. She needs it so badly, and every little noise seems to interrupt her sleep. Other baby is gagging again. Gross. It is a tiny baby but is sounds like an adult.
The good thing about being in this room, I am so settled. That feels so good. I have my computer set up, I don't have to get it out of my backpack and put back. I have plug-ins to charge my computer, my cell phone, and Mackynlee's portable DVD player. I think this is going to be a great place to hang out for a few days with baby girl. Especially when that tube comes out!!!
I am going to the PRMH at some point today to get her stroller. Her nurse said I can take her for a stroll around the hospital. We just can't leave the 6th floor. At least I can take her to the family room and get me some coffee from time to time.
I have shared the following poem with my readers before, I want to share it again today. This is for you Trisha in memory of LittleJohnny. Keep on keeping on. Every word of this poem is so true. Whether you win or lose the battle, it applies to every life affected by a CHD. I see it here at CHOP>
Somewhere…someplace… today…
A family is waiting to hear…
Is something wrong with their baby?
The answers aren’t quite clear…
This family has entered an unwanted world…
And they just don’t know what to expect…
Somewhere…someplace… today
They first heard the words: heart defect.
And how they hoped this was not true…
And thought… this cannot be…
I too… know just how this feels…
For one day…this was me.
Somewhere…someplace…today…
A man and a woman embrace…
Their baby is in surgery…
They long to see his face…
They haven’t got to hold him yet…
Without…a cord or line…
They pace the room awaiting news…
And hope she’ll be just fine.
Prayers fill this busy waiting room…
And mom and dad are scared…
Somewhere…someplace..today…
The tiniest hearts are repaired.
Somewhere…someplace…today…
A child’s growing fast…
Smiling,laughing,thriving…
His mom thinks…can this last?
It’s almost easy…to forget…
That anything is wrong…
Somewhere…someplace..today…
Her child seems so strong.
Somewhere…someplace… today…
A little boy fights…just to live
A father holds his tiny hand…
His love…all he can give…
The doctor’s are all baffled…
They fear that he might die…
Somewhere…someplace…today…
A family says goodbye…
Somewhere…someplace…each year..
More than 40,000 families will see…
What it means…when something’s wrong…
They’ll face a CHD.
Today…for just a moment…
Stop…remember…reflect…
Make time to tell someone you know…
“I’ve been changed by a heart defect.”
Author - Stephanie Husted
Stephanie Husted is a free-lance poet who has a child with Hypoplastic Left Heart Syndrome. She enjoys encouraging other families through the written word. She lives in Michigan with her husband and two sons, Colin and Braeden
CHD Awareness Balloon Luanch
It's time to spread the word.
I'd like to invite EVERYONE EVERYWHERE to join in and launch as many balloons as possible on Sat. Oct. 3rd. On each balloon you can attach a card, found below, giving facts about CHDs. Visit a dollare store near you and purchase as many balloons as you'd like! Print and attach your cards and launch away!!! (Please feel free to copy and paste, add or delete any information found on the card.) Hopefully this valuable information will provide some awareness of CHDs. Please feel free to tell your friends, family, and carepage families.
Congenital Heart DefectsTell someone you love about Congenital Heart Defects!
~CHD's are the most common birth defect in America~1 in 100 children (40,000 newborns a year) will be born with some type of heart defect
~CHD's are responsible for 1/3 of all birth defect related deaths
~20 percent of children who make it through birth will not survive past their first birthday
~Although a child is born every 15 minutes with a CHD, research continues to be grossly under-funded in America
~Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research
~There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them~There is no known prevention or cure for any of them
~More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime
~The cost for inpatient surgery to repair CHDs exceeds $2.2 billion a year
~CHD is the leading cause of infant death in the US and in every country around the world
Support the Children’s Heart Foundation
Gives me chills everytime I read those facts about CHDs. So glad Trisha is getting out there and spreading the word. She is a strong, Godly woman who has been through a lot this year.
News on Mackynlee: We are out of the pod! YAY!! Still have our chest tube. BOOOOOO. Doctor wants chest tube to stay in one more day. We have had a crazy morning. The new baby in our pod went into cardiac arrest two times within 30 minutes this morning. The first time I wasn't kicked out because I was feeding Mackynlee. The second time I was kicked out. I heard them request some kind of surgical something. Keep this family in your prayers. He is a new baby here at CHOP, not even had surgery yet. Mackynlee and I got comfy in the rocking chair, then the person came to get blood work. Then we got comfy again, and Mackynlee projectile volmitted her formula. That's what the nurses get for not giving her a bath before now. She needed one so bad. She enjoyed every minute of it. I will post pics of it in a little. We were picking about it saying she was getting a spa treatment. There were three of us bathing her. Now I am praying she can rest. She is so tired, her eyes are blood shot. She cannot sleep for long periods of time in the pod, but now that we are in the room, maybe we will both sleep. The nurse has turned off the buzzers on our monitor. We have the bubbling of our chest tube, and the bubbling of the other baby's chest tube behind us. It is about to put me to sleep. The only problem, and I don't want this to sound mean, the baby behind the curtain sounds like she's gurgling/volmitting. Respiratory is in there and I don't know what kind of problem she could be having, but it sounds disgusting. Great, now the dad just walked in, he is noisy. Pray Baby Mackynlee gets more than a ten minute nap. She needs it so badly, and every little noise seems to interrupt her sleep. Other baby is gagging again. Gross. It is a tiny baby but is sounds like an adult.
The good thing about being in this room, I am so settled. That feels so good. I have my computer set up, I don't have to get it out of my backpack and put back. I have plug-ins to charge my computer, my cell phone, and Mackynlee's portable DVD player. I think this is going to be a great place to hang out for a few days with baby girl. Especially when that tube comes out!!!
I am going to the PRMH at some point today to get her stroller. Her nurse said I can take her for a stroll around the hospital. We just can't leave the 6th floor. At least I can take her to the family room and get me some coffee from time to time.
I have shared the following poem with my readers before, I want to share it again today. This is for you Trisha in memory of LittleJohnny. Keep on keeping on. Every word of this poem is so true. Whether you win or lose the battle, it applies to every life affected by a CHD. I see it here at CHOP>
Somewhere…someplace… today…
A family is waiting to hear…
Is something wrong with their baby?
The answers aren’t quite clear…
This family has entered an unwanted world…
And they just don’t know what to expect…
Somewhere…someplace… today
They first heard the words: heart defect.
And how they hoped this was not true…
And thought… this cannot be…
I too… know just how this feels…
For one day…this was me.
Somewhere…someplace…today…
A man and a woman embrace…
Their baby is in surgery…
They long to see his face…
They haven’t got to hold him yet…
Without…a cord or line…
They pace the room awaiting news…
And hope she’ll be just fine.
Prayers fill this busy waiting room…
And mom and dad are scared…
Somewhere…someplace..today…
The tiniest hearts are repaired.
Somewhere…someplace…today…
A child’s growing fast…
Smiling,laughing,thriving…
His mom thinks…can this last?
It’s almost easy…to forget…
That anything is wrong…
Somewhere…someplace..today…
Her child seems so strong.
Somewhere…someplace… today…
A little boy fights…just to live
A father holds his tiny hand…
His love…all he can give…
The doctor’s are all baffled…
They fear that he might die…
Somewhere…someplace…today…
A family says goodbye…
Somewhere…someplace…each year..
More than 40,000 families will see…
What it means…when something’s wrong…
They’ll face a CHD.
Today…for just a moment…
Stop…remember…reflect…
Make time to tell someone you know…
“I’ve been changed by a heart defect.”
Author - Stephanie Husted
Stephanie Husted is a free-lance poet who has a child with Hypoplastic Left Heart Syndrome. She enjoys encouraging other families through the written word. She lives in Michigan with her husband and two sons, Colin and Braeden
Thursday, October 1, 2009
Surgery #2
We had our 2nd surgery this past Monday. Lots of ups and downs, but for the most part Mackynlee is recovering fine. She is still in the CICU. Our prayer is that her drainage tube will be removed soon, and we will be able to go home to MS to our other children soon. We have been here in PA for two weeks. Missing Connor and Shelby a lot!!! I haven't been keeping my blogspot updated, but I saw where my friend Trisha has our blog website posted on her blog, so I am going to try to do better in keeping it updated.
Subscribe to:
Posts (Atom)
