"Little Miss Stable"

Our sweet Caroline was born at 12:44 PM on Thursday, August 12th. We knew we would face some difficulties. We knew she had a multicystic kidney that was probably nonfunctioning, we knew she had only four digits on her left hand and a shortened radius bone on her left arm, and most importantly, we knew she had a hole in her heart. The defect is known as VSD (Ventricular Septal Defect). While in utero, we were told that this defect was fairly common. So common, that we wouldn't need to change our delivery plans and she would possibly not need to have surgery.



When she was born, she immediately had severely labored breathing and was turning blue/purple. They showed her to me quickly and started working on her. Before they took her to the NICU, they showed her to me again and her color returned back to a nice shade of pink.

Because of some issues that I had with the first c-section with James and Jack, the anesthesiologist gave me a lot of medications during the procedure. By the time I got to the recovery room, I could barely keep my eyes open. The first thing I remember is Jesse coming in and telling me that there were more issues than what we expected with Caroline. He said that she had a hole in her diaphragm and some of her lower body organs were up in her chest creating lung damage. Some short time later, the Neonatologist came in and to describe the disorder in more detail. All I remember is him saying they were going to lifeflight her to Austin.

Once back in my room, the helicopter pilots came in with Caroline so I could see her before they left. I remember the pilot saying they were the best there is and she was in great hands. For 24 hours after she was born, I had so many medications in my body that it was painful to keep my eyes open and be awake. Because of this, the magnitude of the situation didn't sink in for some time.

Caroline left College Station around 4:45 and we were told that the flight would take about 30 minutes. When we hadn't heard from the hospital in Austin by 6:30, Jesse called to get the latest information. The nurse at the Dell Children's Hospital told Jesse that because her lungs were at a low percentage of saturation, they thought they would need to put her on ECMO. Extracorporeal Membrane Oxygenation is a very serious process where they basically take all the blood out of the body, oxygenate it and then put it back in the body. This was devistating news and the nurse suggested that Jesse come right away. Jesse got to Austin by about 11:00 pm.

Caroline in the NICU in Austin

By the time he got here, she had stabilized and they decided to keep her in the NICU to monitor her levels. Apparently, your lungs need to saturate in the 85%-100% range. Caroline was right at the boarderline and they were monitoring her closely to watch her levels. She was on the respirator and would fight everything they did causing her saturation levels to drop. After about 21 hours of close monitoring and many ups and downs, they decided that they couldn't risk her droping anymore and would need to start the process of putting her on ECMO. Jesse called me at the hospital in College Station with the devistating news. This was about 30 hours after the c-section and I knew I had to be in Austin for her surgery.

Fortunately, my Dad and two of my very best friends were with me when I got the news. We immediately started working on getting me checked out of the Med and to Austin as quickly as possible. My mom, dad and I made it here by about 11pm on Friday night. By the time we got to Dell, the procedure had started and things were progressing well. There were about 20 people either directly working on her or on standby to help if needed. The surgery took about an hour and a half and the surgeons said it went very well and she immediately started responding positively to the machine and was saturating at 100%. If this trend was to continue, they would be able to start thinking about doing the operation to pull her organs back down where they belong and close the hernia in her diaphragm.

To give you a little idea of the magnitude of what is happening to her and the machines she is on, she has at least one nurse dedicated to her at all times. She usually has two if not three. Additionally, there is a person at her beside that they fly in to specifically monitor the ECMO machine. Last night, there was a man flown in from Tennesse and now there is a woman flown in from Iowa.

Here is a picture of all the machines she is on. You can barely see her little head in the middle of the picture.

We have been given a room right next to hers so we are able to go see her whenever we want. Because I am still recovering from my surgery, they gave me a hospital bed in the room next to hers. Without that bed, I would not be able to be here. We have also been accepted into the Ronald McDonald house which is right across the street. So far we are only going over there to shower and clean our clothes. Dell Children's hospital is amazing. I hope none of you have to ever be here but know that it is an amazing place. They keep giving us a courtesy cart that they restock daily full of cookies, snacks, drinks and coffee. I also get free meals because I am connected to Caroline being here.

Now that she has been on ECMO for several days, we should be hearing soon about a decision on surgery to correct both her diaphragm and her heart. Because she needs a strong heart to recover from the possible damage to her lungs, they are considering doing the heart surgery first while she is on the ECMO machine. There is some danger in that she is on a blood thinner while on ECMO and this is always on a concern during surgery. With the surgery on her diaphragm, there is concern about how her lungs will respond. The initial fear was that her right lung was completely unformed. Because we had so many ultrasounds when I was pregnant, they are pretty sure now that her lungs were almost completely formed before the intestines and liver got sucked into her chest cavity which is an amazing blessing. Yesterday morning one of the nurses called her "Little Miss Stable" and at this point that is the best thing we can hope for.


If you can pray for us, please pray:
that Caroline will continue to do well on ECMO
that her right lung will become strong and healthy
that her swelling will reduce
that she will be able to tolerate coming off ECMO
that she will be able to tolerate the surgery on her diaphragm
for the doctors and surgens to have the wisdom to know when the timing is right
for Jesse and me as we settle in to the reality and magnitude of what we are facing
for James and Jack. Please pray that they feel peace and love throughout this journey.

Praise God for allowing us to be Carolines parents! Praise Him for the doctors and support staff that He has placed by her side minute by minute. Praise Him for every minute that He allows her to fight to stay alive. Praise Him for my family and friends who we wouldn't be able to survive this without. Especially for my parents who are taking care of James and Jack and bring them down here to see us and Caroline, Jesse's dad who flew down here to support us, my sister and brother who are helping keep Jack and James loved and cared for, and Jesse's sister who has been keeping many people updated with what is happening with Caroline. Praise God for the many people who are praying for Caroline right now. Praise God for being the All Mighty physician! We know that through Him Caroline could be healed as I write this!

His disciples asked him, "Rabbi who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life." John 9:2-3

**Latest update - The cardiologist that we saw while I was pregnant just came in and said that he didn't see any reason for Caroline to have heart surgery in the near future. In fact, he said that from the scans that he saw from Thursday, he didn't think she would need to have surgery before she turns one if she is able to get past all of these other issues. Praise God!!!