Today Adam and I got to spend more time with our sweet boys. Gabriel is doing so well and is eating more and more through his small feeding tube that will be moved to his nose soon. Caleb was stable throughout the night and the tests and ultrasounds they ran went well. He is under lights for some jaundice, his head ultrasound came back stable with no more bleeding on the brain. This was very minimal yesterday anyhow and is very common in preemies/neonates. His fetal echo today showed the stent is doing its job. They have been able to reduce some of the heart meds and he is maintaining good blood pressure. His other surgeries for his aortic stenosis and left ventricle will need to take place later when he has grown closer to full term and has recovered from this difficult procedure. I can’t explain the feeling of walking into one room to hold one healthy baby and walking into another room to see your other child, who is sick, fighting after a life-threatening procedure.
I have to share an experience this afternoon that rocked Adam and I to the core. I cannot express adequately enough to each person reading this what faith can do. What God can do in your life. Adam and I got to the Cardiac Intensive Care Unit and he wheeled me into the large room for this tiny baby fighter of ours. Nurses all around, so dedicated to their job, giving us the positive reports I shared above. We walk over to this precious little boy, who was just inside my womb, so protected and active. We stood watching him with the knowledge of what came together so amazingly to help him just the day before. We asked how the fetal echo went and one of the managing nurses said she would page the on-call cardiologists that could tell us how it went, knowing we are interested in exploring all options for Caleb when those times come and he is ready.
An on-call Cardiologist (Dr. P) came in, who we haven’t met with or spoken to before. He shared the report. He also explained his connection to the Cardiac team in Boston and knowing our interest in an eventual Bivent repair, said that he would contact them with the latest images since we haven’t heard from them yet. He then said he didn’t think the team would agree that Caleb is a good candidate for the Bivent. Partially because of this recent restrictive atrial septum repair he had to have yesterday. I explained that it only showed up in the past few weeks, and that Dr. Walsh (cardio at Baptist) agreed that because it showed up only recently, the damage to the lungs that this can create could be a lot less than babies that have this diagnosis a lot earlier in utero. He said that the restrictive or intact atrial septum can come on suddenly and do a lot of damage. I then said I thought it was a positive that Caleb’s lung x-ray surprised everyone with how good it looked yesterday. Well, he interjected that this doesn’t mean there isn’t damage we can’t see. He then shared that surgeries that come with the 3 stage repair for HLHS might not be effective if the pulmonary veins and lungs are damaged and not functioning properly. Therefore, babies in those situations are only left with initial repairs and are given comfort care and palliative care. They go home with their families to live however long their bodies hang on. He then went into mortality rates for heart babies. (Forgive me, these numbers may be off because this part was a blur) He discussed the survival rate of babies with HLHS surgeries and mentioned a figure of 60%, add onto that prematurity, it goes down to 40%, then add in the restrictive atrial septum and it goes down from there. And that all in all there’s a 50/50 chance of survival this first year of life.
I sat in utter shock, anger and disgust. I said well where is the positive? What hope is there then? He said, well there are a percentage that go on to live fairly normal lives. This is just a very serious and delicate situation and this is a serious diagnosis. Tears began to flow from our eyes. I decided not to say another word and wished to God he would walk away and leave us alone. I sat thinking, “Why are you even here!?”, “We didn’t ask you to walk in here while we were checking on our son!”.
If you have been following this blog and our story, we have made it no secret that we know the scary side of congenital heart defects. I have done quite a bit of research about Caleb’s heart issues. We are not ignorant and simply think this is an easy fix and everything will just be perfectly fine. I’ve seen the numbers, I know the stories of the families who have lost their babies or children to various diagnoses in the groups I have joined online. I wanted to scream “How dare you sit here and dwell on these numbers while we are sitting right here next to our tiny baby who was JUST BORN yesterday, who overcame a life-threatening procedure, who GOD Himself brought through this to be here with us!!!” I’m not saying that giving a dose of reality to parents isn’t something that needs to be done or that the information isn’t true. I know that those numbers exist, but in this moment we NEED to focus on the positive reports, the excitement on a nurses’ face when sharing a lung x-ray, and the numbers that show he made it and is doing well right now.
That doctor walked out after I stopped responding. I stood up and went straight to that baby and laid my hands on him and started praying. I held his hand and I told him that WE are not listening to that today. NOT TODAY! This is not our God’s plan for you, NOT TODAY! God did not orchestrate such amazing events to come together for us to focus on mortality rates. You my son, are a testament to His love and His purpose and we are going to praise Him in the storm. You are not alone. Look at all of these amazing angels God sent to help mommy and daddy help you get better! You are a fighter and we will fight for you.
I got into the wheelchair and Adam and I shed tears all the way back to our room. The next thing that happened literally brought our souls to our knees. A neonatal doctor working in the NICU with Gabriel knocked on our door and walked into our hospital room while we sat crying from this incredibly emotional experience. He introduced himself as Dr.Paul C. Engstrom. He shared the very positive information about Gabriel and admitted that we probably know more about Caleb’s reports than he does since he is in the NICU, not the CICU, however he has gone and offered any help he could provide and has been checking on Caleb. Probably seeing our heartbroken state, he then said, “I’m a Christian. Can I pray with you?”. I immediately burst into tears- something so desperately needed in such an unexpected way. He spoke such a beautiful prayer over us as a family, over Gabriel and over Caleb. He spoke of God’s purpose, God’s power and plan that cannot be thwarted. After he prayed, he shared that there have been so many babies over his 32 years of practice that have overcome the odds and thrived in life. He shared the story of a girl, at 23 years old, who reached out to him recently who he treated in the 90’s. They didn’t think she’d make it. When she survived, they didn’t think she’d live to her first year, that she’d have brain damage, and other crippling issues. She shared with him that she graduated from college, and has gone on to be a doctor of physical therapy in Norfolk, VA. He said, when you are gripped by fear and think that the worst of the worst is happening, think about what we see as the worst truly means. What is the worst that could happen? If we were to lose him, that means he gets to meet the face of Jesus. He shared that there is a plan for Caleb and only God knows that and no one can get in the way of that plan.
After he left, I looked over at Adam, in shock of what we had just experienced. We went from hearing the most defeating information, to the most encouraging information in the span of an hour, from two doctors. We were floored and immediately reminded of what I like to refer to as the coin flip. Which side are you choosing to focus on? If both sides exist, which side are you choosing to stick to? We are choosing the side of faith. It’s as simple as that. It doesn’t mean we are ignoring reality, or that that side doesn’t apply to us or Caleb. We are choosing faith because the odds or numbers don’t go away regardless, but we are not dwelling in that space. We are not wallowing in the fear of the unknown. How dare we let this little baby lay there and fight and meanwhile let our minds and hearts be consumed with depressed thoughts and sadness! That is not why God chose us to be Caleb’s parents. That is not why God has filled our hearts with peace and strength that goes beyond all understanding. We choose to stand by him and fight. We choose this side of the coin. Our children belong to God. We are here to guide them through this life, but they were and always will be His.
If you remember an earlier post about the meanings of the names we chose for these boys, you’ll recall that Gabriel was a messenger of God. When that doctor walked into our room today, saying he was the doctor working with Gabriel, I couldn’t help but think that sweet Gabriel sent this message from God, at just the exact time we needed it.
Tonight and in the coming days, weeks, and months that you pray with us, we ask you to join us on this side of the coin. It will carry you through the most unimaginable moments, bring you to your knees, and change every way you view this life we are blessed with.