Three days with Matilda

The few days we got with Matilda were so intense that we didn't have much time for blog updates. In addition, we were still recovering from the cold we had the previous week. So we were also sleep deprived going into this, which left no energy for anything beyond the necessities. We thought we would tell ya'll a little more about what happened.

Matilda was born on Tuesday Jan 29th at 8.03am. She weighed 5 lb 10 oz  and was 18 in long. In addition to Weslie's parents and aunt Cecelia, our friend Eugenie (who, with her husband Jud are two of Matilda's baptismal sponsors), and two pastors from Weslie's circuit were there for support. Rev. Ryan Ogrodowicz had a brief prayer service for us all, which Matilda loved very much and responded with much kicking and twisting in the womb! The doctors decided to do a c-section that day because they didn't think that Matilda's heart would tolerate a standard delivery. On Monday, Jan. 28th, Dr. Bleich saw the first sign of heart failure, which was fluid around her heart. Her heart rate was also consitently too low, under 120. Since she was big enough to handle major heart surgery, they decided to go ahead and deliver her. She cried several times right after she was born (which we hadn't expected or hoped for) and was breathing on her own with a little help of a CPAP machine for about one hour. Again, much more than we had expected since the cardiologist, Dr Roten, told us that Matilda would most likely not be able to breathe or even cry, just gasp for breath. So we were all very happy and hopeful in the beginning. Weslie baptized her in the operating room when they had stabilized her a little, and after that she was transported to the NICU at Cook Children's Hospital, which is right next door (in fact, they have a sky bridge between the two hospitals). They intubated her and put her on a ventilator right after she got to the NICU, and then ran test after test for the first few hours. She was stable for the first five hours, but then she got arrythmia and her blood pressure dropped drastically. They had to shock her heart several times and give her IV medications for the arrythmia and the blood pressure, and she slowly improved during the evening and the night. At first, they had planned to do surgery on Thursday, but when she took a turn for worse they decided to move it up to Wednesday. Weslie was with her most of Tuesday. I recovered very quickly and was able to see her three times that day (first the brought me over there in my bed and later in a wheel chair). I'm very thankful for that since this was the only day (other than Wednesday morning) that she was conscious enough to move a little. 

On Wednesday morning we went to NICU early, so that we would be able to see her before they took her into the operating room. The surgery was supposed to take 6-8 hours, but it ended up being 11 hours. That's the longest 11 hours of our lives. A nurse called every hour and gave us updates, so we knew a little of what was happening, but it still was an awful long wait, especially the last four hours. The surgery itself went as well as expected. The problems arose when they took her off the bypass machine, which was doing the function of the heart during the surgery. It's always critical when the heart has to start beating and working on its own again, and so it was for Matilda. Her heart was beating for a little while, but it was too weak to last. They had to do CPR for almost 1.5 hours before they put her on an ECMO machine, which is somewhat similar to the bypass machine used during the surgery. The plan was to let her heart rest and recover for a few days and then see if it was strong enough to work on its own. They took her to the PICU after the surgery and we were able to see her there before we went to bed. She was swollen after the surgery and didn't look like herself, and she was unconscious, but somewhat stable and really not as bad as we had expected.

On Thursday morning, we were taking it slowly and slept in a bit, but got a call from the PICU that the doctors wanted to speak to us that morning while they were doing their rounds. We talked to a doctor as soon as we got to the PICU, and he didn't have any good news for us. Matilda hadn't woken up even though she wasn't on any sedatives, and hadn't reacted to anything, not even pain. They did an ultrasound on her brain and saw a massive bleeding, which she most likely gotten during the extensive CPR the previous day. Premature babies are very fragile and very easily get bleedings, especially in stressful situations like CPR. In order to be on the ECMO machine, you have to be on anticoagulants, which can lead to even more bleeding. Therefore, they always discontinue the ECMO when they find brain hemorrhaging. Sadly, there was nothing more they could do for Matilda. Her brain didn't function and her heart couldn't work on it's own. It was time to discontinue the treatments. My parents and my sister Kea were on their way to Ft Worth and were scheduled to land at 6pm, so we asked if we could wait so they would get to see Matilda. This is the reason we didn't give any updates on Thursday. We wanted to tell them first and didn't want to risk them reading about it on Facebook. Before we went to pick them up, our friends who had been watching Edith brought her to the hospital, so she could meet her sister for the first and only time. In the evening, when we all (Weslie and I, our parents, my sister and Weslie's aunt) were there Rev Ogrodowicz came to do the commendation for the dying. After that, we were able to hold her for the first time since birth. Finally, I held her while they took her off the machines and I held her while she took her last breaths at 10.20pm on Jan 31st.

Friday morning I was discharged from the hospital, and after we had picked up Edith we went back home to Burkburnett. It was so painful to have to leave the hospital without our baby. We miss our sweet Matilda so much and we can't wait to see her again.

We can't thank you all enough for your prayers, encouragement, and support before, during, and after Matilda's birth and life. We have been blessed beyond reckoning with beautiful family and friends.

We love you all very much.

Weslie, Kristina, and Edith