There is no sugarcoating this. Two months of living in the NICU has been really hard. Some days I feel completely overwhelmed and so physically and mentally exhausted it seems I can’t get out of bed.. but then I think of my sweet baby boy and I do. I do because there is no other option. People tell me, including the nurses, that I don’t need to be here as much as I am but I want to be. Personally, I do need to be. My baby boy is in the hospital and I need to be with him.
And you know what? For the few months he’s in the NICU, it’s okay that I’m not sleeping well or enough. It’s okay that I can’t stay at a weekend get-together long. It’s okay that I haven’t sat on my couch to watch a movie in months. It’s okay that I eat dinner at 430pm and then eat a bunch of snacks when I get home at 10pm because I’m starving. It’s all okay because I prayed and begged God for a baby, he granted my prayers and, now, there is no place I’d rather be than with him.
A lot has happened during our second month in the NICU and our little warrior has achieved so many milestones. We’ve had some small ups and downs but, overall, an uneventful course, thank God.
First of all, Little Jackson isn’t so tiny anymore! He has been tolerating feedings via his feeding tube well and subsequently doubled his birth and then went on to keep gaining weight. He’s now up to 6 pounds and starting to outgrow his premie clothes already!
Speaking of feedings, Jackson has finally been able to start eating by mouth! At 35 weeks old, they start introducing breast or bottle feeding. As they told us from the beginning, eating is like a marathon for preterm babies. It takes so much out of them to learn to “suck, swallow, and breath” and then do it every 3 hours! It’s a very slow process but Jackson has been doing well. Most days he is taking about 1/4 of his food by mouth and the rest he gets through the feeding tube still.
Another big hurdle during this second month has been coming off his oxygen support. Usually at 32 weeks preterm babies are able to trial off noninvasive ventilation (aka cpap) however Jackson’s lungs have been very sensitive. We decided to wait until 33 weeks to trial him off cpap and unfortunately he did not tolerate going straight to room air. He needed hiflow nasal cannula for about a week, then regular nasal cannula for a week, and FINALLY weaned to room air. It’s so much more comfortable for him to have the oxygen tubing off his face!
Premature babies are at high risk for retinopathy and are monitored by a neuro-ophthalmologist. They give him eye drops to dilate his pupils and then need to use a little clamp to hold his eyes open while the doctor examines them. It looks torturous and is my least favorite day of the week (he is monitored once a week). According to the doctor, the exam really doesn’t hurt them but I hate hearing Jackson cry! He does have a small degree of “ROP” or retinopathy of prematurity but we are told it is completely normal for babies born at 27 weeks gestation, it is improving, and should go away completely without intervention.
Babies can have a difficult time maintaining their body temperature, hence the temperature controlled incubators. Since Jackson has been able to wear clothes he has done a great job staying warm and was able to be transitioned to an open “crib.” In the open, he is also starting to adjust to lights and noise. The NICU is a bright and loud place to be.. if we’re lucky it’ll train him to sleep through anything at home!!
I was hoping we’d make it though our NICU course without Jackson needing any major procedures, however, he has an inguinal hernia that needs to be surgically repaired. Surgery is schedule for next week.. it is done laparoscopically so hopefully he’ll have a quick and easy recovery!
In better news, Jackson loves taking baths. He just sits there looking all around.. is there anything cuter or better smelling than a clean baby? We finished reading Harry Potter and the Sorcerer’s Stone and are on to the second book.
I can’t believe it’s been two full months in the NICU already. As with most things, the days drag but the weeks have flown by. But two months in a hospital is a long time no matter how you spin it and I am exhausted and have developed a strong case of “NICU-itis.” We’re all ready to be done with this chapter of our lives and the end is at least in sight now, but we still have a few more hurdles to overcome. Lord willing, in a few more weeks we’ll be bringing our brave little man home and this hospitalization will become a distant memory!