**You know you're the mom of a 3 year old when the title for your blog post comes from The Fresh Beat Band. They are Jeremiah's favorite people, and the reason I can cook dinner every day. They are four musically inclined teenagers who frolic about and sing ridiculous songs, and I always find myself wondering if they are THAT happy. They're cute and all, but in the middle of Jeremiah's favorite song, one girl has to shout "KEEPING IT REAL, BANANA!" My heart aches for her at that moment. Perhaps her dreams are fulfilled. You can decide by clicking HERE to watch the video, right about the 1:27 mark. You can thank me later when you are singing it in your bed as sleep eludes you.**
We met with Dr. Parker today. He is a pediatric surgeon, and he will handle Parker's repair surgery after he is born. The first few moments of our meeting, once he found out that Parker is a family name, consisted of the So-Southern "Where are your people from?" discussion. I am of the Panthersville Parkers, and he is of the Valdosta Parkers. He was thrilled with our name choice.
He was very nice and very informed. He was also VERY straightforward. We left the appointment without any new information about Parker, but he firmed up alot of details about what will happen when Parker is born. It wasn't all that pretty, to be honest, but it was somehow nice to have someone outline the possible scenarios-- positive and negative. Things got very real very quickly for us, hence the title of this post. It was going to be called "Keepin' It Real", but my brain cannot help but add the rest. Curse you, Nick Jr!
Our appointment didn't involve any exams of me or Parker. We sat in a consultation room and went through Parker's chart, then outlined procedures for his birth, then were given instructions for our NICU tour. That was pretty much it. He threw MUCH information at us, used all sorts of real big words, but did so in a way that was relatable and understandable for us. He let us ask any questions we could think of. We didn't get any new information that was specific to Parker, but I feel like he firmed up some details about treatment of all CDH babies that will inevitably be part of Parker's care.
To list every thing in one blog entry would be impossible, so I am working on a new tab up at the top, right under our picture, called "CDH FAQ." Click there to get the nitty-gritty details of what CDH is, what it means to babies, and how it can be treated. Anything on the following list is explained in depth over there.
In the meantime, here is a very abbreviated rundown of Parker's first days:
1. Born via c-section at Northside
2. Immediately sedated and intubated, likely before he is able to draw his first breath on his own
3. Stabilized by NICU team, maybe maybe maybe shown to Mom and Dad if tolerant of ventilator
4. Transferred to Egleston so that he is close to an ECMO machine, should it be needed
5. Depending on blood gases and lung function, he will await his repair surgery. The surgery will not be performed until he has overcome pulmonary hypotension, should it present itself.
5a. If his pulmonary hypotension does not resolve itself, he will be put on ECMO to help his heart and lungs stabilize and prepare for surgery.
6. 4-5 days in, provided he's cooperating, repair surgery of the hernia itself will be done. Strangely, this is really the "easiest" part of the whole thing. Ideally, it will be done laproscopically. If the hernia is large, a Gore-Tex patch will be placed over it. A patch will put him at higher risk for re-herniation in a few years, but at that stage repair surgery is pretty low key.
7. Post-op, it's a waiting game to see how his lungs start to function now that they are given some wiggle room. Depending on his ability to breathe, his ventilation and medications will start to be weaned.
8. Once he is off of ventilation, he has to prove that he can tolerate feeding before being released from the hospital. CDH babies often have digestive issues, such as reflux, from the esophagus, stomach, and intestines being manipulated during development and surgery.
9. After he proves he can breathe and eat on his own, we get to leave. There is a possibility of being sent home on oxygen, and/or with a feeding tube.
All in all, we should expect a NICU stay of minimum 6 weeks, average 8 weeks.
There might come a time during our NICU stay that serious discussions are held about removing life-support measures. While these devices help the baby heal, they also can (if used for too long) do more harm than good.
So...*deep breath* There you have it. That's what we are up against. There are many many unknowns that won't cross over to knowns until he's here. At any given point, things can go from rainbows and butterflies to scary horrible decisions.
He might die. That's just a fact of life. In fact, there is a fairly large chance that he's going to-- larger than any parents ever want to hear. Still, we've come to terms with that. We've really come to terms with the whole thing... we don't have a choice.
So, we go into it knowing as much as we can. Thankfully, we have doctors who are straight shooters. I'm not a person who wants you to blow sunshine and throw flowers at me to make me happy. I'm a person who wants to know what might be coming so I don't get blindsided. I think, if anything, it will help me to celebrate Parker's victories, no matter how small, when they come.
Until then, we pray. We know that others are praying for us. We pray for peace, we pray for faith, and we pray for God's will to be done even if it's not what we hope for. I've been thinking alot about prayers recently, which is a whole other post.
This post feels like such a downer, but it's real. If you find yourself feeling anxious or sad about it all, go back up top and listen to the Bananas song. :-)
For today, Parker and I had some donuts-- he didn't have much of a job today, but as the only rule is no BAD appointments, he squeaked by. We go back to the perinatologist tomorrow, which will hopefully give us some more information specific to how Parker is developing right now. I'll update with any news tomorrow!