Clark’s story: Part II

*Shelby was my nurse that night. She came in and introduced herself and told me that her plan for me was to remove my catheter somewhere around 10:00pm, which was roughly 12 hours after my surgery. At that point they would get me into a wheelchair, and I could go to the NICU to see Clark. I would keep the pain pump overnight. The cardiologist had completed an echo on Clark and said that everything looked pretty normal. Mild variation and they would follow it. My mom, sister, dad, and Ben were in the room with me when the neonatologist that was present at Clark’s birth came into the room. She said that they had done some preliminary testing per MFM suggestions and that genetic testing had been sent off and that x-rays of his head, neck and abdomen had been done. The x-ray of his head showed a cyst in his brain. The x-ray of his spine showed flattened, deformed vertebrae and the x-ray of his chest showed significant rib abnormalities on the right side of his chest with flattening of the rib bones.

There was no moment of shock for me–I cried immediately. My nurse walked in, saw what was happening and left. The doctor asked if I was okay. I just nodded. No, I wasn’t, but that should be obvious. I was distraught. I managed to ask her what we needed to do next. She said they would be doing an MRI of brain and spine the following day. That was it–news having been delivered, she left.  My sister and parents left, too. They were going to stop at the NICU to see and probably pray over Clark. I think they were too upset to say much. In walks Shelby with a wheelchair and a nursing assistant. “You just had major surgery, so you can’t stay for too long– you’ll hurt yourself, but you’re going to see your baby, now. Hold on, let me grab your medicines real quick.” While she was gone, I gingerly swung my legs over the side of the bed, stood up (ouch), and hobbled into the wheelchair. At that point, I think I would have crawled to the NICU if I’d had to. She walked back in, looked at me, and laughed and said “Well, let’s go.” She didn’t have to do this, and she was taking me about 3 hours early. So, off we went to the NICU, and I cried as they wheeled me in.

He was in this tiny isolet, naked save a diaper, and he was beautiful. They told me he was only on 1L of 02 and was doing really well. They figured because he’d been in so much fluid, and was delivered via c-section that he was unable to breathe well right after birth. It was quickly resolving though. He had a rib deformity–pectus excavatum. You can google pictures of this. It’s basically a sunken-in chest. Not all that rare or abnormal and rarely causes any other issues. They did not think it was causing his initial respiratory issues. Again, I asked if I could nurse him—no. They then took me through their orientation, and I hit the dilaudid button on my PCA pump like 83,492 times because they were explaining what a pulse ox was when all I wanted to do was touch my baby, cry, and tell them to shut up. Ben tried to explain that I had been an ICU nurse for over 2 years, so she nodded and tried to explain his heart rate monitor to me 🙄. Honestly, I know it’s their job, but I really wanted them to shut up and go away because I had just received bad news and wanted to process it without their explanation on germ theory and the importance of washing your hands. Under Shelby’s orders, I left a few minutes later.

That night was spent sleeping and waking up again fuzzy-headed and confused. It was a long night. I was pumping every 2 hours or so and drinking liters worth of water because I was so thirsty. Ben and Shelby poured up colostrum and half-carried me to the bathroom on a regular basis. I was so sore and my heart was hurting and I just prayed a lot. I couldn’t understand what I was supposed to be doing. Should I give up? Should I pray that God brings us through this? Should I just accept that Clark is very compromised and will likely suffer a lot?  I didn’t really know, so I just prayed for peace and comfort and healing for Clark. “Please give peace and comfort and healing for Clark.” I said this over and over and over again when I would wake up because it was the only prayer I had left.

The next morning I begged Shelby to come back that following night while she unhooked my IV dilaudid and loaded me with Percocet. I got up and took a shower. It hurt like hell, but I didn’t want to stay in the bed any longer, and I felt like I needed to get ready to deal with whatever the day was going to bring. I ate breakfast and got into the wheelchair to go to the NICU. When we got there they told us he was off oxygen and had been all night, and that he was doing well. I asked if he was peeing/pooping and she said, “Oh, yeah.” All very good news, and I was so happy. I asked if I could hold him and she said yes. It was a precious moment. Then a physical therapist walked in to assess his foot.  She said it was absolutely not clubfoot. His foot was positional and would need to be massaged, but was not going to require clubfoot therapy. Our OB and neonatologist told us they didn’t think it was a clubfoot, but after all the bad news it was really hard to believe that something could be okay. Hearing a third person confirm this and explain why it wasn’t a clubfoot was helpful and made it more real and believable to us. The nurse said I could try nursing him, but that he may not latch. She got a lactation counselor from the NICU to help me and observe for any issues. I snuggled him up and he latched immediately. Ate for 25-30 minutes. Another answered prayer. Because he did so well and I was a STM with breastfeeding the doctor agreed to remove the IV fluids. He was now off O2, off IV fluids, peeing/pooping, and eating. He looked so beautiful and I was just ready to get his MRI over with. We left to go eat lunch in my room,  and when we came back they let Ben hold him and bathe him. Then they took him to MRI which was supposed to take “an hour.” It took two and a half. So I got back down to the NICU and nursed him quickly. I told Ben he was getting out of the NICU now. They had no reason to keep him. The nurse tried to argue saying that he needed to be “observed,” and I shut that shit down quickly. “He’s eating, and off 02. What are y’all doing for him here besides letting me accumulate a huge bill?” She left and got the NICU doctor who was a new face. He said the results of the MRI were back and they were normal. NORMAL.

Let that sink in.

The MRI of his brain was normal. No brain cyst. No skull abnormality. No hydrocephalus. No evidence of craniosynostosis. There was some fluid around the brain, but very minimal and considered normal for c-section baby. The MRI of his spine was normal. No compression, or misshapen vertebrae. The MRI was not of his ribs so they still look “off,” but are causing no distress. I cannot even begin to tell you how many times I asked, “But what about the xray? Could it have been so wrong.” The neonatologist had no answers, but said that the MRI was conclusive and the brain and spine looked fine.

“But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed.” Isaiah 53:5

 I then told the neonatologist we would like him back in our room now. After much discussion he finally had to agree there was not anything wrong with him, so he reluctantly agreed to let Clark leave the NICU with us. The very same neonatologist visited us the following morning and wanted us to follow up with neurology on Friday for “completeness.” Whatever, man.

I still don’t have the words to say what’s in my head. It’s not even a discussion that I hate MFM. They have used ultrasound imaging every month since August and told us that Clark will have major issues forever. They have said that I was unable to have this baby in any other way than a c-section. They said he had a definite clubfoot. They said he had ventriculomegaly significant for shunt consideration (at my final appointment) and most likely craniosynostosis. And none of it has been proven true. Are they really that incompetent? Are they complete idiots?

I cried in my room to my mom on Thursday. It was a day after his dismissal from the NICU and I was so upset about how everything had gone and the constant stress for months and months. I said out loud, ”Actually, maybe they did see all of that. I think God just decided to heal my baby.” Immediately, I felt sudden peace. The god-given kind. Giving voice to those words confirmed them. I know now without a shadow of a doubt that God DID heal my baby. I don’t know why. I know I certainly don’t deserve it, but I want you to know that He did it anyway.

I’ve been vocal about my disbelief that Clark would be healed. I just haven’t been able to drum up much faith about it. But over the last week especially I have just prayed that God would heal my baby–God please heal my baby.

Matthew 21:21-22 “Jesus replied, ‘I tell you the truth, if you have faith and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, ‘Go throw yourself into the sea’ and it will be done. If you believe, you will receive whatever you ask for in prayer.”

Now, we’re not completely out of the woods yet. Clark has pectus excavatum which ironically is the birth defect he DOES have that MFM didn’t find. Weird. And it can be sign of chromosomal abnormality. And the genetics tests aren’t back yet. And he has been referred to neurology because he has hypotonia (meaning he’s pretty floppy). So we aren’t out of the woods completely, but I have been made aware again–God is ever-present and he listens to our cries for help. He hears us. He cares. For every person who has raised a prayer on Clark’s behalf–thank you. From the bottom of my heart, thank you. Please keep praying because God is listening.

“’If you can?’ said Jesus. ‘Everything is possible for him who believes.’” Mark 9:23

So please. Keep praying with me. Believe with me. Love to all ❤️