Hello Low-Flow, Again!
Hello to everyone.
Xavier went to low-flow today! That means a smaller cannula and smaller tubes. It means room-temperature air (100% oxygen) at 0.06 liters/minute. It means no water vapor in the flow. It means a step closer to getting him home!
Xavier has been upped to 25 ml of 24 calorie per ounce milk every three hours. His bowels are moving food through like a train.
He has reached 1255 grams at his last weighing; that's 2 lb, 12.5 oz! He put 50 grams on yesterday. Three pounds is in sight, perhaps even this weekend!
Nursing on the breast today, Xavier pulled 3 ml even through the nipple shield. How do we know he suckled 3 ml? The nurse hooked up a syringe to his NG and drew out what he ate so she could adjust his feed accordingly (she pushed it back into his stomach, of course). We learned that breast milk digests much quicker than formula, so the nurse had to check out what he got fast.
His stools are much darker today. Allison, his day nurse today, and I had a discussion about what color it really was. Was it more green or more yellow? I suggested ochre. We both agreed it is the best color we have seen in weeks.
His hydrocele testis has gone down significantly, though it continues to fluctuate and is still the size of my number five distal phalanges (the smallest joint of my little finger). Even more exciting, his testicles have started descending into his scrotum. Gotta say, that is a little weird to see. Usually this occurs while in the womb at about week 34, so most people never see this migration.
Much good news to report today. Always, we give God glory for all He has done and is doing. We also thank all of you for your prayers and support.
1200 Grams and a Warm Body
Greetings and hello to you all.
Xavier has broken the 1200 gram goal and is (as of 8:00 PM last night) at 1205 grams (2 pounds, 10.5 ounces).
His stools are looking much more the color they should, so the Actigall seems to be doing its job.
Xavier is working to achieve (and is closing in on it) his goal of regulating his own body temperature. Today, his bed was turned from "servo" to "manual". This is a big thing! In servo mode, the bed constantly reads Xavier's temperature and auto-adjusts itself to maintain him at a preset temperature.
In manual mode, the bed is set to a temperature (28.9 degrees C, or 84 degrees F today), and Xavier is left to regulate his own body temperature (of course, he is bundled up in a full body sleeper and a swaddle). His body temperature was at 36.7 C (98 F). Hallelujah!
Kathy, one of many NICU nurses, but one Rebecca and I really like when she rotates on to Xavier's care, informed me today that the doctors have decided that Xavier will need the full ten days of his EPO injections.
One of the interesting things, which was pioneered at University Hospital, is how they "anesthetize" babies so getting "poked" with a needle and the burn of the injection does not bother them as much. The combination of sugar water and a pacifier stimulates endorphins which help babies not feel as much pain. Who would have thought this?
This has become Rebecca's favorite picture. It now replaces a picture of me as the background on her cell phone. I'm not sure how I feel about that :) I think (when I get a few minutes) I will make it this blog's header image.
Xavier's New Clothing
Hello to everyone.
Rebecca is doing well. She scheduled and oversaw the Southern Outpost's carpets deep cleaned, chased down a scrap metal guy trolling the neighborhood and got him to take some yard junk, selected paint for the kitchen and bedroom. She even scheduled a concert date at Red Rocks (it was an item on our date list).
We reordered our schedules a bit last week. Rebecca arranged with Xavier's physical therapists to move his times to 7:30 in the morning. Now, she takes the mornings, helps with the PT, does his early cares, puts him to breast, kangaroos with him. This gives her the rest of the day to accomplish other tasks.
Xavier is doing well. He achieve 1175 grams (2 lb, 6 oz) this past weekend and 14 inches in length. Because this weight is close enough to the 1200 gram milestone, the doctors changed his care schedule to every three hours instead of every four. This, though exciting, did disrupt Rebecca and my newly reordered schedule, but we have (almost) adapted. The 1200 gram weight also means increased milk because he goes from 12 feedings a day to 8. He now gets 24 ml of 24 calorie milk, generally as much by bottle as he can take.
We started Xavier on the bottle at Friday's 4:00 care (this really helped Rebecca relax about having to produce milk and keep up with his growing demand). This was both exciting and daunting, but Xavier and Dad did amazingly well. The physical therapists and the nurses were surprised and pleased at how well Xavier took to it; he got 9 ml before growing too tired to go for more. It amazes me that something so seemingly simple as suck, swallow, breathe can be so fatiguing to someone 2 and a half pounds. Not only amazing, but ironic that nursing by someone so little can also consume more calories than the calories he might get from the milk he consumed.
The introduction of a bottle adds an interesting wrinkle to feeding Xavier. When he breast feeds, we don't know how much milk he gets and we do need to ensure he gets his full amount (last week he was not getting a lot from the breast, so we did not have this problem). So, when he goes to breast on mom, the nurses will first weigh Xavier. Then, after Xavier finishes nursing, they weigh him again, do some math and fill a feeding syringe with the balance of milk.
As we were warned a couple of weeks ago, Xavier's hematocrit level dropped over the past week to a level of 22.5% as of Monday. This means he has gone anemic again. To help stimulate his bone marrow to produce more red blood cells, Xavier began a regimen of daily shots (a minimum of seven, possibly ten) of erythropoietin (or EPO). These injections need to be placed in fatty tissue, which Xavier has very little of. So, the injection is done in the fat layer just below the skin. It's a little painful to watch, but it's over quickly. We are praying the EPO treatment will do the job, otherwise it means another blood transfusion, which means he will be off his feeds for a while and another IV. When he is off his feeds, his growth slows remarkably.
His low red blood cell count also contributes to his easy fatigue. He is having to work harder to breathe, which consumes calories he could direct toward growth. It is also why he has had weight fluctuations near the end of the week.
Xavier's high-flow was adjusted to 1 liter/min @ 30% oxygen. He is still getting used to the lower volume of air flow, so his Brady count has gone up a bit, but he still is doing well on the new level. The next adjustment will be to low-flow, room temperature air.
Xavier's second ultrasound to check his liver and gall bladder was yesterday. The nurses managed his time and feeding so he didn't have to miss a meal like he did two weeks ago. The report came back today and the doctors no longer have any concern about the gall bladder. Thank you, Jesus! Xavier's stools are getting darker, but are still too pale. Part of this is due to his low hematocrit level.
When Rebecca and I visited Xavier Saturday and unwrapped his swaddle cloth, we found him dressed in a little blue shirt with doggies. The nurse found a shirt small enough to fit him, and he looked so cute dressed in it. Sunday we found him dressed in a little red shirt and Monday he was in a little full-body sleeper. The flannel sleeper had to be removed later because it kept him too warm. The little shirts are hand-made by a mother whose preemie baby was cared for at University Hospital. She donates them to the NICU for others to use.
We have also learned Xavier will likely be too small for a car seat. In order to bring him home we will need to get a preemie car bed. We had never heard of a car bed, but we have started looking into them.
Always, we are thankful for your prayers.
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| Xavier in his first shirt. He looks like he should be hanging out on the beach. All he needs is a dark pair of sun glasses to complete the ensemble. | Xavier giving God praise for all He has done. |
Mom's first go at bottle feeding little Xavier. He did really well for mom, taking six ml before fatiguing.