The Crib Goes Together
The crib we ordered two weeks ago arrived. After a bit of a snafu with the delivery, we got it Friday. It went together in about an hour.
The crib came with "some assembly required." Where to start? I wish I had started with reading the instructions on the packet zip-tied to the springs. It read "Do not remove this packet from the springs. Return assembly instructions to packet when complete." The genius here is the instructions are available and never lost when it comes time to convert the crib to another configuration. Fortunately, I have a large supply of zip-ties.
Why are there always some important looking parts left over? No need to worry. Reading further in the instructions, these parts are needed when the crib is converted to a day bed. Just store them with the instructions in the envelope newly re-zip-tied to the springs.
Crib Complete, except for the mattress. The quilt in front was hand-made by Penny, Xavier's maternal grandmother. She brought it out when she flew in to help Rebecca set up the Southern Outpost.
Closing on 1100 Grams
Hello to everyone.
Xavier is at 1090 grams today, that is about 2 pounds and 5 ounces! He had four Bradys overnight, but most of the babies in the NICU had higher than normal Bradys as well. In spite of the Bradys (all self-correcting and none severe) he is doing well.
We had a chance to speak at length with Dr Liz, the neonatologist this week. This is a rare event as our schedules don't often align. She is pleased with Xavier's development. That said, however, she has told us to prepare ourselves for a late July or early August date to bring Xavier home.
We did learn that when Xavier comes home, he will need oxygen for a while. This is something most NICU babies going home in Denver require. It's the altitude that makes this necessary. The nurse also told us it's good he is going home in the Summer rather than Fall or Winter because of a virus called RSV (respiratory syncytial virus). There is a monthly inoculation at $1500.00 a poke and premies need one a month through their first winter. The good news is that many insurance companies have learned that it is cheaper to pay the monthly costs to inoculate rather than treat an infection. Xavier may still qualify to get the inoculations because of his late summer release.
Always, we thank you for your prayers.
This is a wonderful and touching scene. Mom is praying over her son, asking Father to heal Xavier's liver and digestive issues.
Who Needs a Feeding Tube?
Greetings to everyone.
Today begins Xavier's 5th week out of the womb, and his 36th week of life!
He is doing well. He looks so different from two weeks ago one scarcely can recognize him. He is more interactive, more expressive, fuller in his features (fuller without edema bloating him up). He has a full head of nearly invisible light blonde hair (in the back it is close to an inch long!)
His weight today is 1040 grams, which makes him 2 lb 4.5 oz. He is not packing on the weight like he was, but he's not losing too much either. He is now on 24 calorie milk every two hours and yesterday he started getting an iron supplement. All of this through his feeding tube, along with three other vitamins and meds. His belly measurements have remained stable over the last week, being between 22 and 23 cm; this is a good thing!
He is running 1.5 liters/minute of air through his high-flow at 30% oxygen, this is down from 2 l/min. One of his nurses found a smaller cannula for him and he is not pulling it out of his nose quite so often. The first few days of his 1.5 he had several Bradys, but he has settled down. It's one of the goals to meet before we can bring him home: he has to keep stable at room air.
His liver is still not producing enough bile, no answers as to why at this time. The doctors have introduced a twice a day feeding of a medicine called Actigall (probably a brand name). It's purpose is to encourage the gall bladder to drop bile into his intestinal track when he eats. He's had three doses and so far we're not seeing a change in the color of his stool.
Did I type "not seeing a change in the color of his stool"? He is also being given a cocktail which helps him collect and process fat-soluble vitamins (I believe the cocktail is also vitamin-enhanced). It turns his stool orange. We still need to see it darken, and that means bile, bile, bile.
He is really a lot of fun to change as he is interactive and squirmy in a more challenging way than just a week ago. His hydrocele testis had gone down considerably, but there is still a good amount of swelling. It looks so much better than it did a few weeks ago when it was (literally, I'm not exaggerating) the size of my thumb!
Yesterday marked another milestone for Xavier: he got his first official dry nurse in! It was so wonderful to see, and amazing how naturally he took to it once we got his little hands out of his way (he really likes exploring with his hands and clutching things). The lactation nurse (Katherine) was well pleased with his go. According to her he was "acting his age and not his size" on mom's breast. That was really cool to hear!
After a little bit, Katherine introduced a nipple shield. Xavier latched on and went to town like a pro (we've been telling him every day: suck, swallow, breathe, suck, swallow, breathe). Even through the shield (a perforated piece of plastic fitting over the nipple; basically it's like a surrogate nipple which makes latching easier for small babies) Xavier was able to suck hard enough to draw out a significant amount of milk (the milk can then be sucked through the perforations of the shield into Xavier's mouth).
Of course, this is also an update on Rebecca. She is moving at warp speed while spending several hours a day at the NICU with Xavier. Her blood pressure, at last checkup, finally dropped to a normal level. The doctor told her she is still too active, and she should be taking restful naps every day. Every once in a while, Rebecca will do something that will remind her she is still recovering from a significant surgery, like standing up (without aid) from sitting on the floor.
She is really doing well at keeping her pumping schedule of every two hours and is just able to keep up with Xavier's 168 ml a day needs (she does get sleep from midnight to six; rest for mom is important for making milk). As you might guess, moving at warp speed and keeping up with Xavier's needs (more than just his milk supply), she crashes hard in the evenings.
Our God is good! Always, thank you for your prayers which have carried us this far.
That is one happy mom with her son!
Dad poses with his son. His hand gives some scale to Xavier, who is only 13.5 inches and 2 and a quarter pounds in this "sitting". The little light on his foot is the sensor measuring his oxygen saturation in his blood. Three wires on his chest and belly are his heart monitors. Another wire going under his left arm is a temperature monitor. You can see his smaller cannula and the tiny orange tube (very hard to see) is his NG. The tape on his lip is there because he likes to pull his cannula and NG out.