A Bump in the Road
Hello to you all.
We have had a busy time these last few days, much has been going on. I will hit on some of the more significant items in this post.
Though Xavier is doing well, he has had a little set back. The low-flow air was not enough for him. Though the air and oxygen are not a problem, he still needs the added pressure of the high-flow air to help stimulate his breathing. Less than a day after transitioning to low-flow, he was returned to high-flow at a 2 liter/minute level. It is unclear at this time whether his need to return to the high-flow is due to Xavier's underdeveloped neurological system or coincidental with the onset of a low grade infection.
On Thursday a purple color showed across his belly, starting out as a large spot above his belly button and below his rib cage. He grew quiet and lethargic (which led to raising his high-flow from 1 liter/minute to the current 2 l/m) over the next day. The doctors took blood, urine and some cerebral-spinal fluid (through a procedure called a lumbar puncture) and ran several tests, including some cultures. Though most of the labs are returning negative, there is a low-grade bacterial infection in his blood. We will not know about his CSF cultures until Monday or Tuesday, but we expect them to come back negative, so meningitis is not likely.
Xavier is off his milk feed and back on his IV drip via his PICC line. The PICC line is also being used to deliver antibiotics. It was expected his PICC line would be removed in the next few days with antibiotic treatments continuing orally. It was scheduled to come out Friday evening or Saturday morning, but that did not happen because of all this goings on. Because the PICC line feeds close to Xavier's heart, it makes the tubing an easy highway for bacteria to spread through his little body very quickly. It was ruled out this morning that the PICC line was a a source of colonization for bacteria. The line stays in for the next few days, perhaps to the end of his antibiotic treatments.
The antibiotics have helped his strength return a little and he is doing better. Still another issue has come up. He needed a blood transfusion (about 15 ml). The reason for this is all of the extra blood draws for his recent labs trying to diagnose his illness has left him anemic, his red cell count at 26%. His infection has also contributed to this. Normal counts for babies his size should be in the 32% to 52% range. This is impacting Xavier's ability to carry oxygen efficiently and hampering his nutrient supply and his ability to fight off the infection.
This low count is hampering him from good oxygen flow in his body. The antibiotic regimen will eventually stave the problem of the infection, but the primary anemic issue is most probably due to the increased blood draws (he needs one every day so long as he is on the drip feed because they doctors need to tailor every day's drip concoction with what his body needs, which changes day by day).
Some positive news:
- His weight is 845 grams (1 pound 13.8 ounces). He put on 55 grams in one day, and since yesterday another 45 grams. Some of this weight will be water retention, but still a good trend.
- He has (or was just going to) achieve a full 8 ml of milk every two hours, which is exactly what he should be ingesting. To be fully at 8 ml in his feed will mean stopping of the IV feed and removal of the PICC line. Because of his infection, however, he is still getting his food via the PICC line. The doctors may start him with 1 ml of milk orally later tonight.
- He has grown 3 mm in length last week, bringing him to 33.8 cm in overall length. His birth length was 33.5 cm.
Always, thank you for your prayers. They will lift Xavier up on wings, like eagles!
A self-portrait of mom with nestled baby.
A happy Dad holding little sleeping Xavier. Little does the little tyke know, but he will get a blood transfusion twelve hours from this time.
Inspecting his son, Dad obsesses over the fit of Xavier's newly-changed diaper, but most importantly, Dad lovingly admires his boy!
Dad holding Xavier after a diaper change. He's a little cranky at the end of his care times. The nurses measure, and jostle and listen to his internals, change his bedding and swaddle. What's a little man got to do to get some sleep around here?
Hello Low-Flow!
Hello to you all.
Rebecca and Xavier are doing very well. Rebecca is recovering nicely from her c-section. She is still a little sore at times, but has been pain med free for three days now. Praise God!
Rebecca's milk is coming in slowly, but we have seen several times with better than 20 ml! We've been able to "bank" a good amount, but Xavier is fast approaching a point when he will drain the bank. Rebecca is persevering and we are seeing some increase on a daily basis.
Xavier is doing extraordinary and everyone is well-pleased with his development. Yesterday he was moved from 3 ml milk every two hours to 4 ml milk every two hours. His weight today was 755 grams, a new record! He gained 25 grams in a day. This afternoon, he was moved to 5 ml milk every two hours. He is keeping his food down (mostly) and he is digesting it all within the two hour window (we know this because the nurse will pull back the plunger on the syringe connected to his feeding tube--an OG--and nothing is pulled from the stomach). I am proud to report Xavier had a good sized bowel movement into his diaper which, I hear, was very messy because of another temporary piece of equipment connected to his "front side" at the time. Way to go Xavier! (it was a goal for him to have such a movement)
He has had a couple of bouts of burping up some milk. Today's nurse, Allison, and I discussed his history some and she thinks he just needs to be fed a little slower--not all the milk at once. Although both feedings we gave today (at 4 ml) did not come back up. Feeding is done via a gravity feed; the warmed milk is placed into the syringe, the syringe connected to his OG and then gravity gets it into his stomach. (No, he is not practicing for his college years!)
He was dropped from 1.5 liters/minute in his high-flow oxygen to 1 liter/minute yesterday. Today, his high-flow was replaced with a low-flow line. This is a slower feed, no moisture added. The flow was started at 0.03 liters/minute then dropped to 0.02 liters/minute about two hours later. The high-flow was not so much about him breathing in air (at that volume he did not get much air from the flow), but to help coach him to breathe on his own. The low-flow has slightly higher oxygen, but he gets more since it's low-flow. By next week some time he may be free of his nasal tubes!
Also exciting, the doctors are thinking within the next week to ten days Xavier will be completely on a milk diet and off both his drip feeds. That means his PICC line will come out! He will still be wired with heart, blood and temperature monitors for as long as he is in the NICU, however.
The general formula for babies is 700 ml of milk a day for every 1000 grams. Xavier is currently at 60 ml day, so he has not worked up to the full amount. He has started accelerating toward that however, which is why we are praying for Rebecca's milk to fully come in!
Xavier started physical therapy yesterday. There is a balance between him spending calories on moving and spending calories on growth, so his sessions are light and last less than thirty minutes. All his therapy is designed to simulate his in-utero environment. He gets moved around (his little bed moved back and forth to simulate movement in the womb); he gets little resistance exercises to simulate his cramped fetal position and resistance of the uterus when he stretches or explores; he even gets a little massage to help relieve any stress.
Mom got to kangaroo with Xavier again today, but so did dad! Dad got him for more than an hour and a half. He slept so peacefully on both mom's and dad's chests, but complained when we woke him up as we returned him to his pod.
Always, and with sincerity, we thank you for your prayers.
Xavier unbound (almost). Taken Monday, by Wednesday the high-flow tubing (shown here) was replaced with smaller, low-flow tubing.
Mom kangarooing Xavier. Today he is tucked in under mom's shirt, covered with two warming blankets and finally covered with a fleece blanket. His head radiates so much heat, he gets to wear a little hat outside the pod.
A Champion and a Superstar
Greetings and hello to everyone.
Xavier had a good day today as he approaches his first full week of life outside mom's womb. (Only a week? It seems months ago!) He had his first BM today (we strongly encouraged him to make this goal yesterday and he did not disappoint). It was only a small amount, but a great milestone. It means his bowels are kicking in. His high-flow air amount was dropped to 1.5 liters/minute; that's a drop of 1.5 liters/min over the last three days! Xavier lost 5 grams since yesterday, but he is still 10 grams heavier than his birth weight. His up and down weight is to be expected for his first two weeks. However, his weight drop was a good thing as it precipitated his food intake (mom's milk) to go from 2 ml every three hours to 3 ml every two hours.
I spoke with one of the doctors who helped deliver Xavier this morning, Jess, who came over to re-introduced herself. She is following Xavier's progress and will be until (at least) he leaves the NICU. She gave a glowing report of his progress. She called him a champion and a superstar; she was very happy with his progress.
I picked Rebecca up this afternoon and drove her to the NICU so she could visit our son. She kangarooed Xavier for ninety minutes and he was as quiet during his movement from pod to mom as he has ever been. When the time came to return him to his pod, Rebecca wept deeply; it gets harder every day to leave him for the day. Today was especially difficult because Xavier was so alert, looking around, wrinkling his brow, tugging at the pads which hold his nasal tubes in place.
We continue to pray for Xavier's growth and development. We are saying he will suffer none of the developmental issues the doctors have suggested he may have--he will continue to prove the doctors wrong! It's a great tag line for him. We are also praying for Rebecca to produce more milk; the lactation coaches continue to encourage us that it takes as much as 10 to 14 days and we (where "we" means Rebecca) have only been at it a little over five days.
Thank you all for your support and your prayers. As Rebecca noted yesterday as we considered Xavier while he slept. He is the embodiment of many answers to those prayers.