Monday, September 16, 2013

Week 8 (31 weeks gestational age). NICU ups and downs. (Mostly ups for a change)

An unconventional post, I know, but I'm going to just copy down the care pages from a week ago last year (the 7th through the 14th of 2012) so that you can see a bit of the ups and downs of the NICU. Thankfully a year ago, it was mostly ups. Then again, he'd fallen so far that he couldn't take many more downs.

Remember that as of the 6th Jonathan was carrying about a pound and a half of water weight (3 lbs 11 oz total) on a two and a quarter pound frame, and was recovering from his third surgery. Not the typical way for a baby to endure his third trimester.  His gestational age was 31 weeks.

Written September 7, 2012 10:07pm by mom
J is starting to shrink! Just little bits. He was down to 3 lbs 9 oz today. Since his estimated dry weight is about 2.5 lbs, this is good. He "only" has a little under a pound of water left to lose. His output has improved since last night when they gave extra IV liquids to hydrate him a bit better (prime the pump so to speak) so his body would be better at pulling liquids from his "third space." That, along with the renal/blood pressure meds seems to have helped.

He is resting peacefully and requiring less pain killer.

Also, my dad has made it through surgery. [for prostate cancer]


compare this picture to the one at the end of the week
to see how much he shrank
Written September 8, 2012 8:57pm by mom
1. Weight is the same as yesterday. We are grateful it hasn't gone up. We hope he sheds the water over the next week or two. He seems to be because...

2. Urine output remains up! Diapers in the teens to 30s range rather than less than 10. And a record 44 yesterday.

3. Still touchy and on morphine, but acting a bit less touchy today, needing less pain meds.

4. On room air (21% oxygen) being given through a conventional vent!!! That's right, they switched him back to his older vent tonight. This is a good sign. This also means that once he is stable enough we can start holding him again. Best breathing by him ever. You go boy!

Biggest issue remains water retention. I put a little hat on him (with matching booties -- thanks Sarah S.) and 15 min later when I removed the hat the indentation in his head was so great that I decided not to put it on again. All because of water.
Written September 10, 2012 8:45pm by mom
Jonathan has had a good few days. We have a few concerns for this next week, laid out below, but otherwise

are nearly giddy with the strides he's made over the past few days.

Today he started doing baby things again.  He was stable enough that I could hold him for the first time in three weeks.  He had the best transfer yet to my shoulder, enjoyed his time being held, and even cried an appropriate silent (tube down throat and all) baby cry when we put him back in his bed. The last few weeks he hasn't had the energy to give a good wail when he hasn't liked something.  Instead he would merely wince and had fidgety arms and legs when he was in extreme pain.  Today's cry was definitely a cry of "I was really happy where I was, this bed is cold, and why did you take me off my momma?" sort of cry.  (It probably didn't help that the surgery team started poking at him as soon as he got put back in bed. More on that later.)

Once he was settled back in his isolette, I gave him a pacifier.  For the next 20 minutes he sucked on it and every now and again would open his eyes to look my way.  Again, little baby doing little baby things.  It's been a long time since he was "with it" enough to suck on a pacifier.  It is hard to get the paci in his mouth with the two other tubes in his mouth, but he is pretty persistent and usually works with me to make it happen.

Today he urinated well and showed other signs of digestive progress.  His edema has come down significantly. He is a lot more like a cute little baby and a lot less like a cute little baby covered in memory foam.  If I put my hand on his chest, I still do get an imprint of my fingers on his torso, but his head has mostly lost the memory foam feel, so I'm hopeful that the water weight will eventually be shed.

His breathing deserves a paragraph of its own because he's ROCKIN' this.  He's been mostly on room air for the last few days.  He has continued to be weaned on the new vent, and if his blood gasses this evening are good enough, they may try him on a nasal canula or CPAP.  That is to say, they will take out the tube that goes from his mouth to his lungs, and will give him a much less invasive form of respiratory support.  The doctor said this might cause some bloating, but they do not believe this will negatively impact his digestive tract.  It is quite possible that he will have to get the vent back again, but he is doing so well that this is worth a try.

On to eyes.  Tomorrow Jonathan has his first eye exam.  They are looking for retnopathy of prematurity (ROP).  Generally they do not see ROP in these early eye exams, but they will follow up with him every two weeks until discharge to see if it develops.  Given his early gestational age, we fully expect it to develop to some degree. Sometimes (often) it requires little to no treatment.  

And finally,digestion.  The surgery team confirmed today that Jonathan is looking good, they are happy with how his ostomy looks and have cleared him to start receiving milk again this week.  The neonatologists agree and will probably start him on very small feedings on Wednesday or Thursday.  We are cautiously hopeful about this process.  We do not want NEC to come back (it is rare, but a possibility).  The disease is very scary, and I do not want to see him in that much pain again.  All this said we recognize the importance of my milk to his development and we are grateful that he has enough small intestines left to start digesting while he still has an ostomy.  So all in all, this is a very scary good thing.

On another note, Jonathan is being weaned off the renal (kidney) medications.  His urine output has been good and we are hopeful that the rest of the edema will fall off without the help of meds.

I will be back in the office in nine hours.  I am so grateful that I was able to hold Jonathan on this last day of maternity leave and so very glad that he had such a good day.


Written September 11, 2012 8:28pm by mom
3 lbs 2 oz and very stable. Still retaining a little fluid but nothing compared to the 3 lb 11 oz of last week. He has lost nearly half a kilo of water weight. I can move his ear lobes again. All are very impressed. Thanks for your prayers.


2 lbs 12 oz and no more breathing tube.

Written September 13, 2012 11:35am by mom
rockin the cpap - for a few hours.
J is now down about a pound from a week or so ago. This is good, as I think he has now probably lost all or most of his water weight. [SIDE NOTE: He hadn't. He still had half a pound to go.]

He is taking breaths on his own with the assistance of CPAP. This started last night around 5. I am hopeful that tonight by the time Steve gets to go in he will still be on CPAP, but he has started to realize how difficult this breathing is, and has required increased pressure and oxygen throughout the day, so he may require a breathing tube again. We'd like him to stay this way and not go back to the more invasive breathing machine.

He won't start on milk until he is breathing with less cpap pressure. The CPAP puts some extra air into the belly, and we don't want to irritate his digestion. One thing at a time.

So he won't reach 3 lbs again any time soon, but we are hopeful that when he does, it will all be good weight.

And he's back on the vent.

Written September 13, 2012 5:55pm by mom
Breathing is hard! J got tired out, so after about a day on CPAP, he is back on the conventional vent.

That's ok. He'll be able to try again later. His vocalizations over the past day have been quiet squeeks. Not much for crying yet anyway.

The doctors want to see more evidence that J's digestive system is working & nothing is clogged (more BMs) before they will let him start on milk again. But they hope that'll come in a day or two.

Guys day out
baby loves his paci!
Written September 14, 2012 7:16pm by dad
Maikata was not up to visiting the hospital for the last two days, so it has been just the guys, and what a party it has been!

This morning we had a visitor, and then the nurses let Jonathan out of his box for a nap on my shoulder.  For the next hour and twenty minutes, they nurses had to keep lowering his oxygen, down almost to room air because he was quite happy.

and... back down to normal size (nearly)
This evening now I am back in, and Jonathan was wide awake - they say it is not because of the caffeine, but I know he got a good dose this afternoon. He was busy sucking on his fingers until I gave him his pacifier. Once he realized there as an upgrade available, he grabbed the pacifier with one hand and started gnawing away at that thing with an eagerness that makes me think that two weeks without food is starting to get to the little fellow. The pacifier lasted about 15 minutes before I had to cut him off.

All the medical stuff has been good so far today, the doctors might have to do a little work to see if he is ready for food.  Hopefully they will do so soon.

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