Clara’s first full day of life was the roller coaster of health stability/instability that we had been told to expect, although I don’t think there was anything we could have done to adequately prepare for it. After the joy and elation of her birth yesterday and really strong numbers and signs out of the gate, today she faced her first of many serious trials. I asked Robert to update earlier this afternoon to get everyone focused and praying, but am now going to do my best to explain how she is doing and give you very specific things to pray for. Bear with me as my medical knowledge is new and limited.
Clara had a good night last night and this morning her blood gasses began to drop. This is to be expected and is a sign of the pulmonary hypertension that almost always accompanies CDH. However, it was causing her to struggle a bit and fight the ventilator and breathing was becoming more labored than they wanted so they started by putting her on some drugs for sedation. She was also put on dopamine to raise her systemic blood pressure which was effective.
The tests performed today were an echocardiogram (which looks closely at her heart), a chest x-ray, and an ultrasound of her brain to determine if there is any bleeding. Should she have to go on ECMO a brain bleed would be a concern because she would be on a lot of blood thinners. Her brain looks good. The echocardiogram confirmed the prenatal fetal echocardiogram - the structure of her heart looks normal and healthy, which is great. However, it also confirmed what her blood gas numbers were indicating today: Clara does have pulmonary hypertension. The chest x-ray let us know that her left lung is quite small and her right lung is probably smaller than normal as well. There is no way to really tell the exact size of the lungs until surgery. It also told us that in addition to her stomach and bowel being in her chest cavity that her spleen and part of a liver are also in the chest. The 19 week MRI indicated that both of these organs were below and we were hoping they still were. Because her abdomen is full and round (sometimes babies with CDH it appears concave) they suspect that those organs have probably moved up recently. Hopefully they will be able to be repair this as a part of surgery when we get to that point.
Other news we learned today is that Dr. Turner will be the pediatric surgeon who will do Clara’s surgery, when that time comes. All the pediatric surgeons in this department are wonderful, but we have heard many especially great things about Dr. Turner and are glad that he will be caring for our girl. Dr. Block is the neonatologist on rotation for the next two weeks. He was actually my soccer coach years and years ago and is also a fabulous physician and a good man. He met with us for about 45 minutes today and explained many things to us. He is very straightforward and honest, but also has a very compassionate heart. We are in great hands.
So, pulmonary hypertension is our big beast right now. I’m going to do my darndest to explain it. There are two different blood pressure readings in the body. One is the blood pressure that we all think about when we hear people mention “blood pressure.” That is called the systemic blood pressure and is just the blood pressure throughout the body. There is also blood pressure within the lungs. That is the pulmonary blood pressure. Clara’s systemic blood pressure is normal right now (in part due to the dopamine). The blood pressure in her lungs is high. We measure this by the percentage of oxygenation of that blood. There are two numbers we look at for her blood gasses (oxygen, carbon dioxide and pH). Ideally they would both be close to or at 100. That’s where they were last night. Today, the top number has mostly been in the 90s which is still okay, but the bottom number has been in the 60s and 70s. This discrepancy is what tells us she has pulmonary hypertension. We need to get the pulmonary hypertension under control before we can begin to think about surgery. The goal is for her pulmonary blood pressure to be ½ to 2/3 of her systemic pressure before surgery. Right now, her pulmonary blood pressure is higher than her systemic pressure. The tricky part is that this is just a waiting game. There is not much that we can DO to correct Clara’s pulmonary hypertension. We are trying to keep her stable, rested and sedated in the hopes that the pulmonary hypertension will slowly begin to correct itself. This happens in part as the blood vessels in her lungs begin to open up and allow for more oxygenation.
When Robert posted earlier this afternoon Clara had just hit a very rough patch. Both of those numbers mentioned above were dropping dramatically and despite some shortfall efforts to reverse them, she was unable to recover. The doctors eventually made the decision to start her on nitric oxide and fortunately that did correct the numbers for the short term. She was stable again and her top number was right at 100 while the bottom number was been around 85 or 90. Those are good readings, but we were hoping to get her off the nitric oxide at some point and still maintain those levels. If the nitric oxide had not been successful she would have faced ECMO tonight. While we are thankful for the technology available such as ECMO it is our fervent hope and prayer that her condition will not deteriorate to the point where she will require this treatment.
In addition to the nitric oxide Clara is currently on dopamine (keeping her systemic blood pressure up) and a combination of two sedatives.
11:19PM: We just got off the phone with the NICU again. The nitric oxide that was started about 4:00 worked well for several hours, keeping her numbers above 90. About 8:45 this evening those numbers dipped into the 80s. They stayed down for about 45 minutes and around 9:30 she recovered on her own. Then, about 10:30 her numbers dipped into the 60s and 70s again. They are giving her until about 11:30 to see if they will rebound on their own. If they do not, we will begin to think about ECMO tonight.
I’m going to stop writing now. It’s too difficult to update with things constantly changing. As soon as I type one sentence, the scenario seems to change again. For now, we ask that you pray specifically for Clara’s pulmonary hypertension and the blood oxygenation levels. Pray that she will stabilize and not require ECMO. Robert and I have been praying that she will reveal her fighting spirit that we know she has and that she will rest in the power of God’s hands tonight. Please pray that Robert and I are able to rest some too as we are both exhausted and overwhelmed and we know we still have a marathon ahead of us. I’ll try to post more tomorrow and I do apologize if I was unable to accurately explain some of this medical stuff. It’s all a little over my head.
Continue praying. We are praising our God, even through this unknown and scary times. He is the One who can work miracles in Clara.
All of my love and all of my prayers are with you... that the peace of God would surround you, that God would hold little Clara in his hands tonight and she will be filled with the breath of the divine....ReplyDelete
We do not know you but your story has sure touched our hearts. Count us in on those prayers going up for precious baby Clara. We had a grandson born with his intestines outside his body so we know God is a miracle working God!!! Carol and Terry MizeReplyDelete
please please please feel free to ask me anything you can think of about cdh. or use me as a shoulder or an ear or anything else you need. my little one is almost 4 months old. he was born with cdh (diagnosed at 18 weeks in pregnancy) and 3 heart defects. he just had his heart surgery and we're still working on feeding issues before we get home for good. it's been a long, hard-fought journey and we're ready to see home again but we're here. we're alive. and we're kicking! :o) praying for your little one as she fights hard, too! my facebook page is hope for hollis and our caringbridge page is: http://www.caringbridge.org/visit/hollisyaunReplyDelete
please feel free to find me at either place. the moms i met early on have become some of the best friends i've ever known. one of them called me today when i was having a rough time being here alone. i'd love to be a friend to you when you need someone who has "been there, done that". praying for a very UNeventful and restful weekend ahead. oh, and btw...i know it's not what ANY parent wants but if ecmo ends up being necessary, embrace it as a gigantic monster of a machine that has the power to save your baby's life. once i got there, it was much less terrifying.
in His grace alone,
kelly (hollis' mommy) :o)
Praying, Praying, I love you all so much. Just feel God's healing, comforting arms around you both. In my devotional yesterday Frances Havergal once said" Every year I live--in fact--nearly every day--i seem to see more clearly how all the peace, happiness, and power of the Christian life hinges on one thing. That one thing is taking God at His word, believing He really means exactly what He says, and accepting the very words that reveal his goodness and grace, without substituting other words. Take Christ's Word--His promise-- and Christ's sacrifice--His blood--with you to the throne of grace through prayer and not one of heaven's blessings can be denied you.ReplyDelete
My thoughts, prayers and love are with all three of you. Rest in HIM. Love, Janna
Chrissy I'm just now getting caught up on y'all's last 24 hours. Clara is in such fabulous hands with Dr. Turner and Dr. Block leading her care. Know that SO many people are lifting you guys up. I pray for rest for all of you as well, as I cannot imagine how much it is needed.ReplyDelete
Praying for your sweet baby girl. I know how scary this all is. Reach out to anyone in the CDH community anytime you need something!! You have tons of support from people who want the best for you guys!!!! PRAYING PRAYING PRAYING!ReplyDelete
Mom to CDH survivor Charlie (13 months)
Praying for Clara and both of you!! God is on the throne, and His mercy is everlasting!ReplyDelete
Praying the words of Psalm 103:
"Bless the Lord, O my soul, and all that is within me, bless His holy name!
Bless the Lord, O my soul, and forget not all His benefits,
Who forgives all your iniquities, Who HEALS ALL YOUR DISEASES"
We are praying without ceasing for you & your precious daughter, and our church family is praying as well.
Jeremy & Karen Ponds
My mother called me about your baby late last night as she had heard about her from a high school friend who lives in your community. I have a 3-year old son, Ned, who was born with CDH and a heart defect in Chapel Hill....I am so thankful and still overwhelmed to say that he is a survivor. I don't have any words of advice that will make your journey any easier or less taxing, but I can assure you that in the end, The Lord will be more real and personal to you than ever and that you will have a love and respect for life and creation that you could have grasped on your own. Having said that, my heart breaks for anyone who is beginning this long process. There are times now that I can't remember that fear all that well, but when I am introduced to another family, it all becomes so real again. I will definitely be praying for Clara throughout my day every day until she is healed and made whole. She is beautiful and just know that she rests in the arms of the one who restores the broken, heals the sick and can raise even the dead. She rests in a place in her sickness that we should all be able to find rest and peace in all our troubles. She will walk with Jesus in a closeness at an early age and my prayer for Ned was that it would teach him to hold onto Jesus for the rest of his life.ReplyDelete
I made a mistake on the address...if you're interested in reading others experiences, ours is at www.babydellinger.blogspot.comReplyDelete
Got this news through the Camp Ridgecrest Alumni vine. We are praying for you with words that cannot be uttered but by the Holy Spirit of God. He Knows.ReplyDelete