Hiya Folks,
So Spencer weighs exactly 5lbs as of tonight, Tuesday! He is definitely starting to look more and more like what a newborn should look like - chubbier and not nearly as skinny and small. His temperament still appears to be very mellow and easy-going ... he doesn't cry or fuss too much at all, but instead is pretty relaxed. Who knows how he'll be when we take him home, but for now, this is wonderful to see! : )
Last week, I mentioned he had "graduated" to a cot (rather than the incubator). Well ... having done so has contributed to, truthfully, this not being the best week for him. Now that he's out in the open with all the noise and stimuli happening around him, he hasn't been able to get off the nasal prongs yet. Adding to that, while he was at 2 cc of oxygen while still in the incubator, he's now gone up to needing between 8 and 10 cc! At first, I thought this was a huge setback - here he was nearly off the oxygen and then up it goes again, 4-5 times what he was getting before! The nurses made me feel better though, saying that in time, he'll get used to being part of the outside world and besides, the difference between 2 and 10 cc of oxygen is actually super minimal. So, that made me feel better. Still though, the "NICU adage" that the babies take '2 steps forward, 1 step back' I suppose has rung true here. I hope to be writing next week that Spencer is finally breathing room air, all on his own. Again, I know that the lungs are the last to develop .... so I suppose that is another bit of reassurance.
Another setback this week has been that the apnea spells (shallow breathing) have started up again. He went 13 days (Sept 10-23) without one and then suddenly, 2 days after being in the cot, they've started up again. He's had about 1 a day since Saturday, the 26th. Now, apnea spells are not unusual for these little guys as I've said before (in fact it's one of the criteria for going home, not to have one for 7 days straight), but it seems strange that Spencer went from not having them for 13 days back to having them again, so the doctors are trying to figure out why. Is it the stress of moving to the cot? A different reason altogether? 3 days ago, he was tested to see if he might have an illness or infection - those tests came back negative, so that wasn't it (thank goodness .. luckily Spencer still yet has to get either!) The doctor today is wondering if it could be reflux - inflammation of the trachea from the increase in volume of milk Spencer has been getting. He's been gaining weight fast this week, so his feeds have been going up fairly quickly - perhaps his trachea isn't used to the amount and has become inflamed, thus making it harder to breathe properly, the doctor thought? Today, he prescribed a twice a day dose of antacid. We'll see if that helps. The other possibility is that his hemoglobin may be low, in which case they could prescribe more iron to compensate. Spencer gets bloodwork done once a week (on Wednesdays) so tomorrow, they will see if that's the case. So .. it's a trial and error thing for now, and hopefully they'll get to the bottom of these apneas soon.
Yesterday, the cardiologist checked Spencer for his PDA valve - this is the valve in the heart that for full-term babies closes as soon as they're born, but for preemies, stays open. Sometimes, the opening is quite large, in which case the babies are prescribed medication to help it close and if that doesn't work, are sent to Children's Hospital to close it through heart surgery. Thankfully for us, Spencer's valve opening after he was born was so minimal that the cardiologist was just going to "keep an eye on it" and re-assess once he was 35 weeks old. Well, she came by yesterday for an ultrasound and found that in the weeks since she'd checked him, it had closed on its own! Phew, that was a relief. A stroke of good news in this seemingly rough week Spencer's been having!!
As for the feeding, Spencer is still "in training" with the breastfeeding. We try him once a day, as any more at this early stage would likely be too much for him and would tire him out. To find out how much he's getting, the nurses weigh him before the feed and then weigh him after, as the amount he'd taken would show up on the scale since it hadn't been digested yet. The past 2 days, Spencer has taken 10 cc before getting too tired and stopping. His full feed is 44 cc and one of the criteria for going home is that he needs to take the full amount of feed (at this point, 44 cc) every 3 hours for a period of 48 hours. So .... you can see that we'll still be "hospitaling it" for a little while yet, until he gets the hang of it and is able to get the amount he needs for the amount of time (48 hours) they require him to get it.
Speaking of "hospitaling it", it's so strange how the emotions of it all go from peak to valley in the matter of one day. Yesterday was a really hard day for me. I was so worried and emotional over these apnea spells starting up again that it was all I could do to keep from bursting. In the afternoon, I was holding Spencer and I just couldn't take it anymore - the tears started flowing and flowing and wouldn't stop. The nurses were fantastic - I felt like a huge fool, but they see it all the time so were so great in helping me pull myself together. Today though, I feel ok again. Yesterday, I didn't know how on god's green earth I was going to get through the month or so it'll be until we can bring him home and then today, I feel like though of course it's painfully tough, we still WILL get through it. It's amazing how some days, it's all I can do to put one foot in front of the other and other days, I feel so incredibly blessed to have this beautiful little boy to call Drew and my own that I'm walking on air. Going through this experience has hands down been the hardest 7 1/2 weeks of my entire life, but we WILL get through it and one day, look back at it all as a memory. Part of what's getting me through is realizing that I'm not the first person to give birth prematurely and certainly won't be the last and darn it, if those mothers can get through it, then so can I!! Again, it's all about that magic word that at the moment, I hate so much ... T-I-M-E.
Well folks, that's it for this week. Thanks for reading and please keep your fingers crossed that they find the reason for the apneas soon!
Love and Hugs,
Tara, Drew & Spencer xoxo
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