Saturday, October 5, 2013

37+2 - Eating Challenges Continue


Our boys are continuing to work hard on learning to suck, swallow, and breathe at the same time during feedings without dropping their heart rates or oxygen levels (when they forget to breathe). It seems though that we stalled a bit – very little progress to report this week. Both of them are still at 4 bottles (out of total 8) per 24 hours and even then, they aren't able to finish them. I have even taken a break with nursing them, so they can focus on mastering bottle feedings which are supposed to be less work than eating from the breast. A feeding specialist came by today to set up a time with us to customize a treatment plan to help them learn to eat. That would consist of finding a bottle and nipple that work for them (so many options out there!), teaching us to pace them some more (tilting the bottle to allow them to breathe), doing suck/swallow counts during feedings, and preventing apnea and bradycardia episodes before they occur by watching the babies. Its not a science, but an art – each baby is different and this is one thing that we don't have machines for in the NICU and the babies have to learn to do this on their own. They don't come home with feeding tubes... 

My biggest fear now is them not coming home by their 40 week due date, October 24. And the fear that follows is that I won't have enough time with them before I have to go back to work. It was hard enough to accept NICU visits eating up most of my maternity leave. Now, my return to work date (end of 12 weeks) is November 12th and I just left a voice mail for my boss yesterday asking him to call me to discuss a personal leave of absence. I plan to ask for just 2 more weeks, so I would return to work the week of Thanksgiving. That would essentially give me roughly a month with them at home before things get more complicated, but that's assuming they come home on October 24, which is less than 3 weeks away... I fear they won't be ready. Perhaps I should just be thankful for 2 healthy babies - this experience has been so humbling and we met SO many parents with kids that have major complications, that I simply can't overshadow the joy of having 2 healthy beautiful boys by my worries about spending time with them during leave. Everything should be considered in perspective! I tell myself that they are going at their own pace and will come home when they are ready.

Another small issue: Carter had some blood in his diaper (again – first time was Sept 23) and this time, its been diagnosed as a milk protein allergy. So, he has been getting Similac Alimentum formula and I have been put on an elimination diet of no dairy. On Monday, it will have been 5 days since my diet started and I will be able to start giving the NICU breast milk again for Carter. Poor little guy – the formula makes him constipated. It kills me to see him eating formula though I know its for less than a week, while I have a half full deep freezer of breast milk he can't tolerate. Logan hasn't had this problem, thankfully. Though I think having no dairy will benefit him too – he gets very gassy sometimes.

A bright spot from last week – a lovely nurse offered me to hold them at the same time for 5 minutes (their schedules are not synchronized so their allowed “touch times” are off by an hour). It was amazing! I never saw them so close to each other before and had a silly smile on my face the entire 5 minutes. Carter was awake and was exploring the boppy pillow with his big curious eyes and everything on it, including Logan. Logan was still snoozing, but he was moving his arms in his sleep. Somehow the two of them got to hold hands for a brief moment and I caught a picture of it... Absolutely precious. Moments like this make me so glad that I have twins and get to watch them interacting together though it is in very small ways right now.


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