First, let's just file this under SHIT YOU DON'T SAY TO A NEW MOM WHOSE BABY IS IN THE NICU. Sorry (not sorry) for shouting. Even if it is true. I get it. In my work, I live by statistics and numbers, indices and propensities. I understand how things can be more or less likely, but I also have seen anomalies that can't be explained by data or science. So please, you can't make a definitive comment like that. It's not helpful and doesn't exactly fuel the hope we're running on right now.
Second, HELLO CAPTAIN OBVIOUS. I gave birth to a one pound fourteen ounce baby at 26 weeks gestation when my baby bump wasn't even really showing IN APRIL when he was due IN JULY and now we live IN THE NICU. Again, sorry not sorry for shouting. With Sawyer, I was so chill, so nonchalant about everything. With Silas though? You bet when we get home I’ll have a foot monitor and alarms on my phone to alert me of his heart rate, respiratory rate, blood oxygen levels and anything else I can monitor. That’s just how it’s going to be, it’s what I will need. "Normal"? Nothing about this is normal and I would be kidding myself if I believed our lives would suddenly become normal when we get home. Not after this journey, not with what I know. We'll ride on hope but temper our expectations with the facts. All with a big ole cushion of love and grace, it’s the best we can do.
Sorry for such a dramatic intro to what is actually a really positive health update for Silas! Mama got all mamabear for a minute....Don't test me! ...but hey we're doing good guys!
Here's where we sit... TODAY!
May 15th.
37 Days Old.
31 Weeks Gestation.
2 lbs, 6 oz.
His BRAIN: I've gotten a crash course in anatomy. So here's my new fancy medical vocabulary. There are 3 things we're monitoring in his brain...
1. The Hydrocephalus - water in the brain. After his coding episode at 4 days old he showed early signs of hydrocephalus but it never fully developed. We’ve finally reached a good place where docs are confident this is not something we need to worry about moving forward. Score!
2. IVH (intraventricular hemorrhage) - Bleeding of the brain. The bleeding of his left and right ventricles was a serious concern early on. This was our “Grade 3” or Grade “2” or whatever, which does show a predisposition to CP. This has now been fully stabilized and is improving (the bleeding is subsiding, scabbing over and releasing). Still a floating grade 2.5, but we’ll take it. Happy it hasn’t gotten worse.
3. PVL (periventricular leukomalacia) - This is a white-matter brain injury, which is essentially the death of small areas around where the ventricular swelling occurs. Also increases chances of CP. He has a few spots of PVL on the right side.
Silas’ latest brain scan showed the following:
- right lateral ventricular enlargement is resolved, several small cysts exist, none are too concerning at this time
- left lateral ventricle shows persistent debris (scabbing over from IVH) with stable minimal enlargement and persistent increased density of the ventricular lining (a good thing, means they can read more of his brain as it’s developing and getting stronger
- The remainder of the ventricular system is normal. Midline structures and cerebellum are “unremarkable”. “Unremarkable” is a neurologists way of saying boring, or good, as we like to read it. ;)
His HEART: PDA (hole) still exists but we’re all impressed by its ability to heal itself (get smaller) given the medication and protocol he’s been on. He will eventually need surgery but we’re waiting for him to gain a bit more weight so he can better recover from said surgery. Goal is 1,500g - 1,800g, best case 2kgs. So he’s got a ways to go. They’ll fix it in one of two ways: either a heart ligation, which is basically open heart surgery where they go big into his left side (leaving a big scar), and just jump right in. Other (preferred) option if the babe can handle it is to go in with a coil through his femoral (leg) artery and push a coil up through his leg and then place a blocker in the ductus, which would ultimately close on its own over time with a strong protocol of nutrition using lipids and blood pressure meds.
His LUNGS: Lungs are going SO strong now that he’s healed from the puncture that occurred very early on.. He’s on CPAP and is doing really well with it. CPAP range is 10 - 5, highest pressure to lowest. If they go over about a level 9, that’s a sign the babe should move to the higher support, more conventional ventilator. Once the baby gets to a level 5 support pressure, that’s a sign he should be ready to try moving off the CPAP. Silas has always been on 7 to 8 level pressure. He was just moved down to a level 6 two days ago and is doing great on it! Baby steps, looking so good.
His NUTRITION: He’s officially off of TPN and lipids (his artificial nutrition needed bc he was too sick to eat mamas milk 100%). He was expected to take a dip in his vitals/weight gain after he got off TPN (a week ago Friday), but he hasn’t gained as much weight as they would like. Goal is to gain ~20grams a night but his nightly gains/losses have been all over the place. What’s really awesome is that nutrition is able to supplement my milk with prolactin (like Muscle Milk for babies), and add as much calories, fats, and proteins as they need to. So they just started pushing more calories and fats his way, and I am just so grateful that this science even exists! so crazy. They’re talking about starting to introduce the breast in the next week or so. I guess just check it out, smell it, look at it. Weird, but OK.
His SKIN:
1. The bridge of his nose: Poor boy’s skin is just so frail and sensitive. Every 6 hours the RT’s (Respiratory Therapists) switch between nose prongs and a nose mask. He had some skin breakdown on the bridge of his nose caused by the mask, but also had some sensitivity in his nose caused by the nose prongs. Poor guy just cannot win. They have this amazing stuff that heals injuries in like 24 hours called MediHoney, and Dewiderm - so they’ve been layering that stuff and it’s been working OK. If that doesn’t work they may put him on high-flow nasal tubing for 24-48 hours just to give his poor face a rest. We have another friend in the NICU who was on CPAP for a very long time, and his face is just beautiful now that he’s off of it, so this gives us hope that he won’t permanently have a red, swollen and wrinkly face. ;-) (shout out to Memphis!).
2. His right inner elbow where his PICC line went it - looks to have some white scar tissue where the line dressing was. This will most likely be a permanent discoloration/scar. And that’s OK. War wounds buddy!! The ladies will love it, I promise.
3. His right thumb tip. Was dark purple from his thumb nail on up. This was due to the infection he was born with. PT’s (physical therapists) and Wound Care have been perplexed with how to handle, but with them working together so diligently, his thumb has now shed the dark purple scab with beautiful pink flesh growing underneath, and it looks like he’ll get to keep the tip of his thumb! We had all written it off, even the doctors, and to be honest with everything else wrong with him, we were fine letting his thumb go as tribute, but miraculously his thumb had other plans and has regenerated and is looking normal as it ever was! Crazy!
As for mom and dad? We are doing fine. We’ll be taking an infant massage class tonight (ummm, heyyyy, can we get a mama massage class? or maybe just a nap? haha). Down the road we’ll also take an infant CPR class when he's closer to discharge, which feels like years but it won't really be. Over the next couple of weeks we'll be working to build up to breastfeeding. Since Silas wasn't born at term, it sounds to me like we basically have to teach him how to breastfeed. That should be interesting. In the meantime I’m pumping every 3 hours and let me tell you, it’s so much harder to wake up in the middle of the night to pump when there is no baby screaming at you to wakeup. Sorry to my sweet husband who some nights has to hear a continuous alarm snooze button every 9 minutes.. for like 45 minutes. Eesh. But we get it done and damn that milk is stacking up in the deep freezer (which otherwise would house Steve’s elk - good thing this happened before hunting season)! So proud of that milk and my bodies ability to acknowledge this sweet baby even though he isn't home with us. Women's bodies are pretty damn incredible!!!
 |
| Look at that thumb! Good as new! |
No comments:
Post a Comment