Jan 26, 2018 Latest post:
May 17, 2018
Hi, everyone! We have quite a story to share, and it is unfolding every single day. Thank you for joining us here! Graham and I are going to keep this as updated as we can, good and bad, as we take each step. As Adora's Momma, I only ask that each time you check this for news of our sweet girl, you use that to pray for her, her medical team, and for the miracle that her sweet little heart would heal.
Adora is our fourth daughter (one of our four little birds, as we like to call them). Our eldest is four, and our twins are two. I remember that not very long ago, I thought the most challenging obstacle was staying home with our oldest daughters, while in the third trimester of pregnancy with our fourth! ;) Then, I thought it was the most difficult thing when we went to a scheduled ultrasound appointment and learned that we would be delivering via emergency caesarean shortly. And it only became harder when the nurse told us in the delivery room that our baby needed help breathing due to fluid in her lungs, and she needed to go to the NICU immediately. It seemed to take the cake when that evening, while in recovery, the NICU doctor shared three pieces of very scary information - that she had fluid in her lungs (TTN - transitory tachypnea of newborn), a heart defect that needed to be explored, and Down Syndrome. Then, without a doubt, the most difficult thing quickly became going to our hospital room without our baby and not be allowed to hold her for 24 hours, allowing far too much time for our minds to wander. My point is, we anticipated the normal parenthood roller coaster - pregnancy, loss of sleep, family adjustment to baby. We had no idea how quickly we would be trained to not look at the next thing as another terrifying drop on the ride, but to look for the blessings in His plan.
Adora was born on 12/1/17 and in the NICU for 17 days. NICU life is rough! I'm sure many of you can attest to that. There are all sorts of rules about "touch times" and, depending on your nurse that day, you may not be allowed to hold your baby outside of those times. It's also very close quarters. Only curtains and partial walls divide you from other babies, from other parents wondering what is next and hearing frightening, personal news, basically in the presence of strangers. Or you see a baby being discharged and feel happy for them, but selfishly discouraged. It's an exceptionally difficult place for highly emotional new Mommas. :) I was discharged on day 5 of her 17 day stay and we took turns spending time with her amongst myself, Graham, and our parents.
Her diagnosis was seemingly simple. The three holes in her heart were discovered on day two of her life when the doctor did an echocardiogram. It was a terrifying conversation sitting by her bed in the NICU, and we cried when we understood that the holes were small, and would close on her own. She would need follow up with a cardiologist, but we were assured that surgery would not be on the horizon. Her TTN was managed with a CPAP machine, and then a nasal cannula, to help regulate her oxygen desaturation, particularly an issue when she ate. There were many meetings with speech therapists working with her on the correct bottle and milk thickness combination to help her eat without (what seemed to be) aspiration. Once she was on room air and eating without issue, we went home! We were anxious about all the therapies and specialists we would need to arrange to create an ongoing care team for her DS, but just so thrilled to be going home with our healthy baby on 12/18.
Around Christmas, she became congested, and we managed it at home with help from our pediatrician. I took her to the doctor on 1/8 and he tested for viruses and sent her for a chest x-ray to check for pneumonia. He soon had the results and saw RSV, rhinovirus, and saw signs of pneumonia in her lungs. I had just arrived home from our visit when the doctor called and asked us to go to the hospital, and I thought I had time to go pack a small bag and take a shower. I only mention this because Graham was very anxious for me to take her as soon as possible! And I thought he was overreacting a bit. But, I will tell you that he was absolutely right!
As soon as I laid her down on the bed in her hospital room, literally at that very second, our baby stopped breathing. Our nurse acted so quickly and was a flurry of pushing buttons and yelling different codes. In seconds, there were 20-25 people in the room. So many people have asked me what they did to help her and I have no idea! I couldn't see her through all the people, and I certainly wasn't in any mindset to take notes. She began to breathe and showed her feisty spirit immediately when she fought the IV. They were quickly concerned about her oxygen levels and we were on the PICU floor within the hour.
Everyone thought we were in the PICU for two viruses and warning symptoms for pneumonia. She was treated for those items, and so well. What a wonderful hospital! (PICU family, I hope you are reading this. You are awesome and part of our story and we are thankful for you. I hope someone else is making the coffee in the mornings now. ;) ) It started to feel like the same conversations that we had in the NICU at a different hospital - oxygen levels, possible aspiration, desaturation, meeting with speech therapists, discussing feeding options tailored to a baby who can't breathe out of her nose... They did an upper GI x-ray to look for reflux and another echocardiogram (we had missed our first follow up with her cardiologist by being in the hospital, and it seemed prudent to do it while we were there, anyway). Her viruses were essentially gone, her lungs were clear, but she had a lot of difficulty regulating her breathing, would sweat profusely, was lethargic, and the list of random symptoms goes on. A cardiologist came to meet with us and explained the VSD in much greater detail than we ever wanted to hear.
Two holes in her heart have basically closed, but one, the VSD (ventricular septal defect), is now classified as large. It needs to be closed. We had heard rumor that it would be a simple procedure through an artery, and reality truly crashed in around us, again sitting by her bed, in a hospital, talking about her tiny heart, and learning that she will need open heart surgery. The surgery is not yet scheduled. It is dependent on several things, particularly hoping for a bigger and healthy baby to make everything that much smoother. We understand that it will be done between 3 and 6 months of age... so very soon. We were discharged on 1/24, and waltzed out into the world with a tiny baby to keep healthy, well and growing so they can later do open heart surgery. No big deal, really. We got this.
Here are a few things we know:
1. God has three times clearly stated through friends and strangers (random), "He makes the impossible possible." There is something amazing coming in her life. Something that the world can point to and say "that should have never ever happened" and we will laugh, not surprised, and thankful that He kept his promise. Maybe it IS her heart - maybe it has already closed and we don't even know!
2. She is perfect. There is not one thing about her that we would change, including her medical obstacles, as it is just part of his plan and her journey.
3. This surgery, as terrifying as things like "heart failure" and "open heart surgery" are to us without a medical background, is very straightforward and there is not a single reason to think that she will not absolutely thrive once it is complete.
4. Her hair is amazing, and is only matched by her sweet and feisty personality. (Just ask our PICU family. They will attest to all of that!)
1. For her heart. That if the impossible possible is not her heart miraculously healing, that the surgery and recovery will go incredibly smoothly.
2. For her medical team - doctors, nurses, therapists, all the way to the people that clean the surgery room. That they are all fully equipped to do their job with excellence and we will feel comfortable entrusting her to their care, every step of the way.
3. For our little, little family. That we will continue to see the blessings on this journey.
4. For our Adora.
The verse we chose for Adora while she was in the NICU:
The Lord is my strength and my shield; my heart trusts in Him, and I am helped; therefore my heart exults, and with my song I shall thank Him. Psalm 28:7 (Cute story - right after we chose this, our oldest little bird was praying for Adora before going to sleep, and prayed that "she will sing for You." At that time, we were reeling from the DS diagnosis (nothing like a little open heart surgery to put that in perspective and make you oh-so not care), and so frightened of her limited future. I wondered if she will have a beautiful voice and will sing to Him... or will she just think she has a beautiful voice?!? :) And, as I just reread this, I see that it says her heart exults. Y'all. Seriously.
The last thing I want to say here, is thank you for caring for our girl. For our family. Thank you for your prayers. And the gifts you have given us. The phone calls and the texts. Generally, people in the medical community have been surprised to see how our people have shown up, how big our support network is, and I don't think Graham and I even understand the size of it. But we are thankful for all of you. And we know it is no accident that you are reading this, right now, whether you know us or not, so please feel free to share our story with anyone that you think should read it. Please pray for our girl, and thank you for being part of this journey with us.