I am participating in a blog event with other heart families. In this blog, I will retell our story from the beginning. I will try not to get to detailed neither too emotional.
July 2008: I go in for my yearly check-up to find out we were expecting our third child. BIG SURPRISE!!! At that time, we had a 6 year old(Shelby Grace) and a 1 and a half year old(Connor Mark) and were very content with the two children. We had picked and joked about having a house full of babies, but in reality, not ready for another baby. Oh well, ready or not, here she comes with many life lessons to teach us, our family, and many, many others.
October 2008: We were disappointed when my husband had to go into work and could not go to the ultrasound appointment to find out if he would get another baby girl or baby boy(that was all we were expecting to find out). So, he would call an hour after my appointment to find out what his special bundle of joy would be. My mom and Shelby(the proud big sis) accompanied me for the ultrasound. The tech went and got the doc during the ultrasound. All the two of them could tell me was they could not find all four chambers of our baby girl's heart. I asked over and over, "What does that mean?" Doctor Pace replied, "Go to Doc Perry(Diagnostic Specialist) in Jackson. You will probably deliver there and be transported out of state for surgery on her heart."
After leaving the office, I was in a daze. Shelby had an appointment across town with her pediatrician to check her back. Her gymanstic's teacher thought she may have scholiosis. While headed there, Mark called. I remember our conversation being very short. I was crying telling him what was going on. I know he felt so helpless not being home. I sat in the parking lot while my mom took Shelby in for her test. I called a friend who works as a postpardum nurse. She said, "I've never taken care of a baby that didn't have all four chambers of his/her heart." I interrupted that as: My baby will die. I called another friend to have her search the internet for info about babies without all four chambers. I then got myself together to join my mom and Shelby inside the doc office to learn that sure enough, Shelby has scholiosis. I remember nothing else from then to my doc appointment with Dr.Perry.
5 days later: Mark and I go to Jackson hoping to find out everything was fine and this was all a mistake. Dr. Perry confirmed what Dr. Pace found. I sat there crying, not understanding why, and shaking. Dr. Perry told our options: #1 abortion #2 nothing(baby would die shortly after birth) #3 have more test and meet with a fetal heart specialist. I cried and cried as Mark answered and I shook my head in agreement. No way would we have an abortion and no way would we do nothing. #3 was the path we would take(no matter what). Dr. Perry performed an amniocentsis right then. It didn't hurt one bit!! I even watched it on the screen. I guess it didn't hurt because I just wanted to know every detail about my baby girl possible.
2 Weeks Later: I remember crying a lot, having a feeling of emptiness inside, staying on the computer to find out as much info as possible(leading me to more unanswered questions), praying nothing else was wrong with her, and not wanting her to die. Finally the call came from the specialist. PRAISE THE LORD, nothing else showed up. We went back to Dr. Perry's office to meet Dr. Shore(the heart doc sent from Heaven to MS). She gave us hope. Our baby had an 85% chance of surviving. We would deliver at UMC then fly to CHOP(Children's Hospital of Philadelphia) for surgery.
December 08 to February 09: I experienced many doctor's appointments(never alone if my husband couldn't go, my friends went with me), lots of emotions, and many kind actions from family and friends as we awaited our baby's arrival. Church was the most difficult place for me to go during these months. Work was a "safe" place, I could escape and avoid people, but not at church. Mark tried to get the word around for no one to ask me anything about the baby. He let people know he would answer any/all questions. All of our church family was so concerned, I would cry if someone just looked at me, patted me on the back, or hugged me. I hated crying in front of my other two children. They did not understand, even though they prayed for their baby sister's heart all of the time. Right before Mackynlee was born, our church had a prayer vigual for us. It meant so much. Around 25 special, Godly, women joined me at the alter for prayer. That relieved so much stress. They will never know how much it meant to me. Words cannot express it. A group of our friend had a get together in our honor the weekend before Mackynlee was born. 200+ friends and family joined together in love and support. It was so touching. Over $10,000 dollars was given to us to help us through this difficult time. We have so many amazing friends!!! We were/are so blessed. I was teaching at two schools, West Marion and East Marion during my pregnancy. Many people from both schools gave us money, gifts, cards, etc. EM gave me a baby shower. It meant so much. I hadn't even known these teachers very long. It would take about 10 pages to list all of the acts of kindness shown to us during the months awaiting our baby girl's arrival. I just want everyone to know once again how much each and every act meant to us.
Monday, February 23: We headed to Jackson for an amniosentisis(that hurt sooooo bad) to see if our baby girl would be born that day(at 37 weeks gestation) or if we would have to wait another week. Many family and friends joined us. I was admitted to the hospital late that afternoon, but no baby. Baby decided to come around 1:30ish Tuesday, February 24th. She cried as soon as she was born. We were in shock. We did not expect that(not really sure what we expected). Just minutes later she was intubated by the team from the NICU. All of our visitors and Shelby got to take a glimpse at her as they pushed her to the NICU. This would be Shelby's only time to see her baby sister until weeks later.
An hour or so after birth, we went to see her in the NICU. Dr. Shores checked her out and let us know we would fly out the next day. She had contacted CHOP. I didn't cry when I left her in the NICU. I was just so thankful to have my baby alive. It was okay that she was in the NICU and not in my arms.
Wednesday/Thursday: The next day, the baby and I flew medical flight to Philadelphia, PA. We got there at 3ish in the morning. I slept til 9ish. When going to her pod that morning, I was bombarded by doctors asking me questions, telling me her ears looked low, her nipples looked too far apart, etc. I so needed Mark with me. I would go to my sleep room and just cry, shake, try to breathe. Mark arrived around 7ish. We met at the PRMH. We got settled in and took a taxi back to the hospital. We spent some time with her and talking with the nurses.
Friday: We got to the hospital early that morning. We were allowed to hold Mackynlee before surgery. Then we had to give her over to the surgeons. Dr. Gaynor met with us in his office before going into the OR. Nurses updated us every little bit. Finally it was over and Dr. Gaynor met with us again with a really good report. Everything seemed to be a success. Thank the Lord.
Friday Night: Mark and I stayed at the hospital in a sleep room. I went to check on baby in the middle of the night to find that she was bleeding badly. Many doctors were around her bedside. Finally the bleeding was under control. We spent the next three weeks in the hospital. She had fought off infections, jondus, and overcome her feeding issues.
The most difficult part for me was being away from my other two children. Our good friend, Keli, flew them to Philly to spend a weekend with us. Shelby got to spend time with her baby sis. They loved the PRMH. We so enjoyed them being with us, but boy was it a tear jerker when it was time to put them in that taxi to head to the airport.
March 23: We brought our baby girl home with no feeding tube. She was on 7 or 8 meds, we had many doc appointments, but other than that we had a "normal" baby. I spent as much time as possible sitting and holding her. I was so thankful for my baby. I stayed home for the remainder of the school year. We were unsure of our plans for the next school year, but God knew all along what would happen.
July 2009: The most amazing lady came into our lives. She was an answer to prayers and sent by God. Her name is Ms. Sharon Porter. She is a retired RN. She stays with our children while we are at work. She loves them and they love her. She is a part of our family now. She stayed right by our side during the complications after surgery #2. She goes to every doc appointment with us. She is a true blessing to all of us. Our children call her Meemaw.
September: Surgery date #2 was quickly approaching. We went back to CHOP for 3 weeks. This time we faced several complications after the surgery. Mackynlee had seizure activity and a brain bleed. We came home only to be admitted back into the hospital after a few days of enjoying home life again. We ended up in the PICU(a story I'm not going to rehash). We stayed at UMC two weeks and came home with a feeding tube. This was a difficult time for us. Mackynlee had the feeding tube until March. She vomitted a lot. The tube would come out a lot. I cringe at remebering all of the times we had to hold her down and put that down her nose!! Those months were full of stress. It really took a toll on all of us. Mark and I took our stress out on each other many times. I don't think we realized just how stressful it was at the time. Looking back, I don't know how we funtioned. God carried us through and didn't give us time to think about it. I praise His name today!! Everything is pretty "normal" around here these days. We are so blessed to realize how wonderful "normal" is and to enjoy every second we are given here on earth. Macynlee's third surgery will more than likely be in 2012. We plan to go back to Dr. Gaynor at CHOP. We have already turned this over to God. We will not waste a day worrying about what will happen.
February 2010: Mackynlee's First Celebration of Life takes place!!! Our friends Shayne and Kathryn Lowery invite many guests to their home to help us celebrate. $1,000 dollars was donted to C.H.I.N. in Mackynlee's honor. You can see pics of this celebration on my carepage. I'll try to update the blog with pics soon. Everyone wore red!! It was awsome.
UPDATE ON MACKYNLEE: She is walking everywhere. She thinks she is as big as her sister and brother. She says one and two words at a time. She loves brushing her teeth. She takes her meds each morning and evening like a champ!! She is the most loving baby in the world. She'll hug us and pat us on the back as she is hugging. She as the best sugar in the whole world. She sleeps in the bed with us and I wouldn't have it any other way. We don't have to go the brain doc or heart doc as often as we once did. Now our appointments are every three months. She still does not eat as well as she needs to, but we see improvement from day to day. Thank God for pediasure!!!!
Thank you God for giving us this blessing. Through her, You have opened our eyes to all of our blessings and made us aware of the many struggles people face every day. Thank You for all of the people we have met along this journey. Thank you for strengthening our marriage through this. Many marriages are torn apart when faced with medical challenges of children. Thank you for blinding us during our storms to help us make it through. We give you the praise, honor, and glory for Mackynlee.