If you’re facebook friends with my kids, you may have read these cheerful updates already, but at least the pictures are new (from my last visit to the hospital). Besides, I wanted you to hear Brianna’s voice as she tells about little Samuel Azariah making steady strides toward being mature enough to go home, and if anyone who also has a preemie finds this, I thought the technical details might be helpful. (Brianna is not only the mom; she’s also a NICU nurse.)January 13, 2015: Been off CPAP since Saturday morning! Samuel continues on the 4 L high flow nasal cannula. Sunday night and Monday were a little rough… very “dingy” with regards to alarms. Multiple episodes of forgetting to breathe, dropping heart rates and turning pale. These events tend to require stimulation (for example: sitting him up while rubbing his back vigorously) and increased oxygen. The nurses and nurse practitioners have been on the verge of placing him back on the CPAP multiple times, but he has always come through these episodes with periods of better breathing.Samuel seemed more settled today. He continues to have frequent “obstructive” episodes where he reacts to some pain or discomfort or reflux or something unknown and turns the color of Jack-Jack (see: The Incredibles) within 1-2 seconds of bearing down and not breathing… but even these seemed a little less common today. He definitely had less moments of forgetting to breathe, and avoiding the pale skin and glazed-over eyes is a major plus! Samuel was able to hang out with me for about 2 hours today. 🙂 After a nice nap in my arms, he started to awaken some, so I sang some songs and talked to him about life outside of the NICU. It was fun to watch those eyes tentatively pop open to engage in communication. He has decided that home sounds WAY more tempting than this hospital life. The little man’s oxygen requirements were down several times this afternoon! The nurse practitioner this AM mentioned in rounds that Samuel is around 35 weeks gestation now… “Next stop, college!” Dr. P. interjected with a laugh, “How about we work on weaning off the nasal cannula first?!” Okay, so first things first.Up to 3 lbs, 9 oz tonight. Two pounds up from birth! The medical team is watching his growth, protein levels and nutrition lab values. There is some serious talk that we may need to start mixing formula with his already fortified milk in order to increase calcium intake. This mom would prefer to not have to keep adding more ingredients to the cocktail… as small a thing as it seems, I would appreciate prayers that we could avoid this step if possible.The more progress we make, the more I long to bring our Samuel home. Grow, sweet boy, grow!
January 15: Samuel is up to 3 lbs, 10 oz tonight (1645 grams). The child is growing! He hardly even looks like the same little person that was born just over 7 weeks ago. I have a few pictures from his first week printed out at his bedside to remind us how far we’ve come in these few short, yet very long, weeks. I was commenting to one of the nurse practitioners yesterday that every time Samuel begins to have less alarms and seems to be progressing with one mode of therapy, its time to wean off the support and challenge him again. Three weeks of intubation and ventilator therapy, followed by 3.5 weeks of CPAP support, followed by the current regimen of high flow nasal cannula. I love the fact that each modality becomes less invasive, that we are slowly losing one tube or line after another. Well, the nurse practitioner warned me that success at one level meant “time to make more changes” for progress. Makes me wonder what lessons I could learn from this constant striving toward better days, pushing through the onslaught of alarms and discomfort and uncertainty… it seems to be having the desired effect for Samuel’s health and growth.
January 16 So, today we are down to 3 L/min of the nasal cannula. Samuel is having more periods of forgetting to breathe, but he is mostly self-recovering from these. Daniel and I went to the hospital a little later today and were told that Samuel has had a very restful day. His nurse today thought that his restfulness might be attributed to less “hurricane-force winds” down his nose with the decreased flow rate. 🙂
Repeat eye exam today showed some improvement with no current stage 3 disease! Thank you Lord for this measure of healing. Feedings are now being compressed over 2 hours with one hour breaks in between, rather than a continuous drip. He is thus far tolerating this change well. The medical team made two changes to Samuel’s plan of care today, decreasing his nasal cannula flow rate to 2.5 Liters/min (from 3) and compressing his milk feedings to be given over a shorter time. He had more desaturation spells today, dipping into the 30s and 40s a fair amount of times, so I don’t think he is too sure about these changes. The night shift nurse is aware of our concerns and promises to keep an eye on him. (“Two eyes, as often as I can spare them,” says Gandalf.) Currently, Samuel’s feedings run over 1.5 hours every 3 hours, with the goal of getting his stomach used to full feedings over a short window of time..
Small feat of the day… wearing clothes for the first time! Grandpa De Leeuw picked out a cute premature-sized onesie for Samuel (shopped for it on Black Friday, no less) that reads, “Pinch me. I’m cute.” Well, Samuel certainly gets his fair share of “encouragement” to breathe, even if it hasn’t stooped to the level of pinching. Either way, the child is cute. He had times of restfulness scattered throughout the day, especially after his bath and while his daddy held his hand, standing beside his isolette. At other times, he was riled up about something and having lots of alarms. I have found it helpful to lift his upper body and head in my hand and gently bounce/rock from inside the isolette when he needs consoling. I did however have a nurse warn me today that Samuel can’t have the same type of frequent consoling when I’m not around… but as it helps him to settle and breathe more easily, I think I’ll just bear the consequences down the road. Thank you for the many prayers and well wishes. We trust that the Lord is good all the time (well, continuing to work on the trusting) and that he loves our Samuel deeply. Even so, I’m pretty sure that it is not getting any easier to leave the hospital in the evenings. It struck me as I walked to the elevators tonight that we had just left our son behind in an isolette to spend ANOTHER night away. Soon, right?Up to 3 lbs, 12 oz (1700 grams) of cute, stubborn, super active, alert and feisty boy.