Week 35 Begins
Hello and greetings to everyone.
Rebecca is a trooper! She is keeping her every two hour pumping schedule in the midst of all manner of activities, such as insurance follow ups for Xavier, SSN Card for Xavier, Birth Certs for Xavier, visiting Xavier, kangarooing with Xavier, reading to Xavier (a Psalm and a children's book), cooking dinner for Michael. She has regained enough strength to take the dog on walks without Lena getting away from her. She is visiting others in the hospital, one a co-worker who was helicoptered to UC Hospital from Cheyenne to have an emergency c-section of her daughter this past Monday (her situation was very similar to Rebecca's). When does she sleep? Oh yeah, from midnight to six on a good night.
We have purchased some furniture for the nursery, a glider (which is getting a lot of use even before Xavier comes home), a crib and a dresser. The latter two pieces are expected in near the end of the week. I've even changed out the electrical sockets for up-to-date ones. Still some work to do, but we have a little time yet.
Xavier is doing well, in spite of his recent hurdles (he's an overcomer!). He is still on high-flow at 2 liters/min and 30% oxygen. Recently he was taken off his feed so the doctors could get an ultrasound of his liver (with a full belly, they could not see anything clearly). He did not like being off his feed for four hours. It was good to observe his behavior at the end of the four hours as it really helped us understand how he communicates hunger (though I suggest no one try this at home unless supervised by a NICU nurse). This, as well as a lengthy trail of other tiny, but related issues, led to tapping him with another IV to his arm to feed him a few days as they took him off his milk.
He has suffered edema the last week and a half. That has started to come down and he for a few days was wetting his diaper so much, the nurses took to laying him on top another larger diaper so his bed would not get wet. He looks much better now, but still needs to shed a little more water. His hydrocele testis is much better, but still swollen.
Since late yesterday, he is back on his milk, up to 14 ml every two hours, that's 168 ml a day! His milk is being fortified to provide 22 calories (regular breast milk is about 70 calories per 100 ml, so 14 ml is about 9.8 calories). He was getting 24 calorie fortified milk last week, but that (seemingly tiny) increase might have pushed him to have his current liver issues (if, indeed, his is having liver issues); he may not have been able to tolerate that many calories.
The doctors are still trying to get him balanced with food, air, oxygen, and a whole host of other things where if you tweak one wrongly, it sets him back a bit. The doctors are doing a wonderful job, but every baby is unique in his needs and some experimentation is necessary. The two most common issues for preemies at his size and maturity are his lungs and his bowels.
Over the last week we have been focused more on his bowels. We have been seeing his stool go from a normal dark green to a white which perfectly matches the diaper. White is not a good color for his stool. This led to the ultrasound of his liver to check for problems in the liver/gall bladder/bile duct tract. The tubes to and from the gall bladder are in good shape and did not appear blocked, but the gall bladder itself was small. This does not mean, necessarily, that his gall bladder is undersized, but that it was not holding a lot of bile at the time of the ultrasound. There are a number of reasons for this, a few are:
- his liver has not matured enough yet
- his gall bladder was just low at the time of the ultrasound
- his has not been on his milk feed long enough to stimulate his liver to produce enough bile
His bilirubin count is elevated and the doctors are watching this as well. This is a metric of how his red blood cell production is doing. It is based on the breakdown of his red blood cells, a normal process, but one which leaves a yellow byproduct from the heme breaking down. An elevated value suggests his bone marrow is not producing new red blood cells fast enough to keep up with the old ones "dying." It may be that Xavier will be given a special vitamin regimen to stimulate his bone marrow, but that will be a couple weeks away if it is needed.
All this means more weekly labs and another ultrasound in two weeks to check his liver again all the while he will be watched closely over the next couple of weeks.
Xavier is looking really good. All the nurses think he looks so cute, and several nurses and on current neonatal doctor think his profile takes after his mother. That does explain the cuteness!
He has grown in length to 13.5 inches (a .3 inch of growth) and now weighs in at 1035 grams (which is 2 lb 5 ounces)
We are praying over Xavier's lungs and liver and bone marrow, still claiming that he is wonderfully and fearfully made (Psalm 139), and always to grow, but grow in a healthy manner. Of course, not too slowly, but also not too quickly either. Recent studies have shown that growing a preemie too quickly (which the doctors can do simply by increasing caloric intake) leads to a life of weight management problems. IUGR (in-utero growth-restricted) babies like Xavier have their own growth chart and statistics.
We are also praying over Rebecca for strength and for her body to keep up with Xavier's milk demands. We are hoping next week Xavier will get some "dry feeding" in and learn how to latch. He is doing exceptional with his pacifier and the nurses think he is ready to take to the breast or bottle (he has started "rooting" for a nipple when we kangaroo with him)
Always, we thank you for your prayers. I was texted this morning by someone who, because she had not seen an update in a while, wanted to know what was going on and to make sure nothing was wrong. She always tells us she and her family hold us up in prayer. We feel it, and I can tell you personally that there have been days recently that such an uplifting of prayer has kept me going.
Great is our God, who always causes us to triumph in Christ Jesus!
Two Pounds And Counting!
Greetings to everyone.
It's been a few days since our last post. Many things have been going on, including Rebecca's mother flying in last week to help us out. What a blessing; she really helped get the Southern Outpost fixed up both for mom and baby.
Rebecca is doing well, though still a little sore from her surgery. She has been doing so well, she often forgets she underwent major surgery. She is getting more active, but still grows tired after (increasingly more) exertion.
Xavier is doing really well. He passed the two pound weight Thursday and as of this morning he weighs 2 pounds, 3.8 ounces. He has been putting on about an ounce a day since his staph infection was cured.
He is back on high-flow and on 2 liters/minute at 35% oxygen. He had gone down to 1 l/min and 21%, but he was having to work hard at breathing and was having deep retractions (retractions are the deep indenting of his chest when he breathes in). Strong retractions mean his energy is being spent breathing rather than growing. He is expected to go to 1.5 l/min today.
His is up to 10 ml milk every two hours. This is awesome and bypasses the 8 ml he had just reached before his bout with staph. The doctors want to get him to 12 ml every two hours, which will happen at midnight tonight.
His antibiotic regimen ends today and his ramping up of feeds has been timed with this. He will no longer need his daily electrolyte and lipid cocktails. This leads to even better news: his PICC line will no longer be necessary. His PICC line is scheduled to come out tonight about midnight. With the PICC line removed, he will only have his breathing tube and an NG. And, no more pokes to check electrolyte levels! Every day I have to ask the nurse, "Hey, what's this bandaid for?" We are glad he will be poked so much less. We think Xavier will be happy about less pokes as well.
Finally, Xavier looks really good! His skin is a healthy pink color and no longer looks papery. He has grown notably. He is alert, always watching during his handling sessions and diaper changes. He has developed a butt, his glutes are forming nicely. His is not as fussy as he was last week leading up this the diagnosis of his infection. He really does look like a miniature baby now!
Always, we thank you for your prayers. When you see Xavier, you see the answers to those prayers.
An iconic shot of mother tenderly caring for her son.
A closeup of Xavier. He still is not fully able to regulate his body temperature, so trips out of the pod require a little hat. There are little tapes on his upper lip and along his septum to help ward against the irritation of his high-flow cannula.
This is the Ogden's first family photo. As has been his modus operandi for months, Xavier does his best to keep a low profile.
Grandma holding her grandson. Penny flew in to assist Rebecca and me in setting up the Southern Outpost to make it more Rebecca-friendly. We so appreciate her efforts; some of the walls in the house have not been so clean in years!
Week 34
Hello to everyone.
On the calendar, today begins Xavier's 34th week, but on the NICU calendar it begins his 33rd week. The NICU backs things up a week. I asked why, but have forgotten the answer. It does, however, work in Xavier's favor.
Xavier is doing much better today than his last couple of days. The staph infection is gone from his body. The type of staph was a "benign" kind which lives on everyone's skin; he may have gotten it into his blood through a scratch or through the PICC line. One antibiotic regimen was stopped because it has no effect on the type of staph Xavier contracted. The other antibiotic has pretty much gone nuclear on the infection, but Xavier will still be on antibiotics another four days. Since his PICC line is being used to both administer his antibiotics and feed him, it will be left in another four days as well.
He started on oral food again this evening, 2 ml of mom's finest every four hours. That is nice to see.
He had a routine ultrasound of his brain today where the doctors look for malformations and hemorrhages. The techs aren't allowed to comment, so we must wait until tomorrow to learn the results. However, from what I saw, everything looks good.
He is also scheduled for an ultrasound of his heart tomorrow. He picked up a heart murmur today and they want to check it out. Though that may sound alarming, it is apparently common with preemies. It may correct itself (high probability), or there is an oral medication that will correct it. If that does not work, then a light-weight medical procedure will definitively correct the problem. We are praying it corrects itself.
Xavier also has developed a hydrocele testis, his recent bout with staph and how his body responded may be the cause. The hydrocele, though not concerning at this time to the doctors, does have a possibility of leading to a hernia. The hernia, if it occurs, may self-correct, or require surgery later, after he leaves the NICU. Of course, we are praying no hernia and for the hydrocele to go away.
The IV the doctors put in him last week was removed today. Also, his OG tube was replaced with a smaller one (went from size 6, the biggest, to size 5, the medium). He is still on high-flow air at 2 l/min. He has reached a weight of 1 pound, 15 ounces! Hallelujah!
Always, thank you for your prayers.