OMG! That Soon?
Hello to everyone.
Xavier made another milestone today. We walked in to see him and noted his temperature sensor was no longer attached. We asked Stacey, his nurse today, about this. She said it came off last night and they decided, since he has done so well regulating his own temperature, he no longer needs to be "plugged in" to the pod's monitor.
Also, this week, he may move from his pod to a crib. The NICU cribs are clear, acrylic tubs, much like the pod without a dome, and fewer monitors and sensors.
The doctors have written orders for Xavier to go to "ad lib" feeding. What this means is a set amount of food is given that he should consume over a twelve hour period, but he can eat whenever he likes or wants. So, he can suckle 20 ml in one feeding and not have the remaining 8 ml pumped through his NG. So long as he eats his 168 ml/12 hours (or whatever amount the doctors set), he can take it as he can and his NG will only be used for Actigall and vitamin injection. This is another step closer to home.
Speaking of closer to home, Stacey was talking to us prior to our leaving and stunned us with knowledge we were not prepared for: Xavier is doing so well, she expects he might be able to come home in the next week or two! Rebecca and I have not planned for this so soon. Until tonight, we were expecting (based on previous conversations with the doctors) the end of July, beginning of August.
This possibility may kick us in to overdrive, especially if it turns out to be a week. We are in the midst of moving out of the Northern Outpost, packing up what's left, listing the property, cleaning it, showing it, selling it. Now, we may have to rustle a car bed and bring our son home in the middle of these plans (plus, Rebecca and I need to attend a "check-out" class where we learn the basics of what to do when we get Xavier home before we can check him out). What's the opposite of Ambien? We might need a prescription. God is our strength. He has brought us this far, He won't abandon us now!
Your prayers are gold to us all. Thank you for them.
Xavier waiting for his bottle. He had to endure hunger pangs a little longer because Mommy had to get a picture of this. It looks like Xavier is driving his pacifier like a car's steering wheel. I explained to Xavier he needs to get used to this, and to just wait until Daddy gets serious about pictures and has to manage poses, lighting, background, and so much more!
Windy, Xavier's dedicated nurse, seems to be something of a scrapbooker. This sign appeared in his bay a few days ago. We learned Xavier has a dedicated nurse, one who follows his case the whole time he is in the NICU. That way we have consistency with his care and can go to a single person for all the answers if we need to.
Another of Windy's creations. This awaited us, hanging in his bay, and announced Xavier had reached three pounds. Upon seeing this, we didn't need to ask the nurse how much he weighed (though I did anyway, because that's how I roll)
1385!
Hello to everyone.
Xavier broke the three pound barrier! As of tonight's 8:00 PM care, he weighs 1385 grams. That's 3 pounds and 1 ounce. He put on 20 grams between Thursday and Friday, bringing him to 1350 grams, then 35 grams since last night to 1385 grams tonight.
I was able to get his hematocrit value today, and it is 27.8. Generally this is a little low (he was at 26 the night of his transfusion four weeks ago), but his reticulocyte count is at a really good level. The hematocrit value is the amount of red blood cells in the blood. The reticulocyte count (or "retic" count) is how fast the bone marrow is producing and releasing red blood cells into the blood.
Thank you for your prayers.
Xavier at three pounds, one ounce. He has just had his diaper changed after sleeping on Mom for an hour, and grew fussy (and a little cold). We had to give him a pacifier to settle him for this photo. It's a little grainy due to no flash; his eyes are still sensitive to strong light. The band on his right leg is his security anklet. His "onesy" he is wearing was one of several preemie-sized jump suits gifted to us from the wing of the Wyoming Air National Guard Rebecca is attached to.
PT in the Morning
Hello to everyone.
Due to some scheduling issues, I was able to do Xavier's 8:00 AM cares and I was there to help with his PT. We had a new PT this morning. Her name is Juliet and she spends most of her time at Children's Hospital. Every so often a Children's Hospital doctor or nurse will rotate over to the NICU for a week or so. This is a way in which knowledge transfers from Children's back to the NICU. Juliet has written articles about PT for infants, both term and preemie, and she is published in NICUs around the country. Needless to say, I took full advantage of her time and asked her many questions as she led me in several new exercises for Xavier.
One of the things Juliet explained was how babies in general communicate with us and pointed out some things to look for to see how Xavier is feeling. She also explained the importance of the right kinds of touch at this stage. If babies, even term babies, do not get a proper balance of "good" touches, then they develop problems very early on because they begin to interpret all touch as painful. It is necessary to poke babies for blood, or shots or this or that, but the baby needs to learn there is positive touch as well.
Juliet (who believes even term parents need to meet with a physical therapist at least once so they can learn the basics) also explained how the techniques employed with babies uses their reflex responses to stimulate so much other physical development and simple motor skills. For example, one of the exercises involves sliding a finger down the top of his foot to the toes with enough pressure to push the foot down, then letting the finger slide off his toes. Xavier's foot should spring back, which it did the first few times. After number three, however, he stopped. Juliet explained that he and his body were focused on what was going on and deciding if it's positive touch or negative touch.
I told her about Xavier's first immersion bath and how it stressed him out. She smiled and said the next bath he gets will go better. His body has had time to process that experience and he will be ready for it the next time he experiences it.
One of the things Juliet told me about her job is that she is letting parents of preemies know it's OK to handle their baby. She asked me if I had seen parents of term babies bicycling the legs of their child. She then said this and similar actions most parents do naturally are good for the baby, even for preemies. She says these therapy sessions let parents know "they have permission to" interact with their preemie in the same way, and that it is good and healthy to do so.
Rebecca attended a NICU Mothers class. These classes are scheduled throughout the week. Rebecca has made a few of them while she was still in the hospital, but this was her first since she was discharged. Rebecca reflected on how her perceptions have changed over the last few years. She thought the woman leading the class had good ideas, but she needed to consider something greater than Human for most of her healing ideas to be effective.
Xavier had his blood draw early in the morning (probably about 2:00 AM) to test his liver and hematocrit level. I was not there when the lab results were available, but Rebecca was able to get the gist of them. The doctors were pleased with his hematocrit level, but his liver numbers (probably his bilirubin counts) are still low.
So, he is off the EPO (thank you, Jesus! That was not a fun injection to watch, much less endure, and little Xavier, trooper that he is, suffered ten of them). However, his twice-a-day Acticgall regimen will continue. He is still getting iron supplements and vitamin supplements twice a day, both oral doses.
He weighs 1330 grams (about 2 lb, 14.8 oz). He has been bumped up to 28 ml of 24 calorie milk per feeding. He took his bottle this morning and drained it, then laid on Daddy'd chest. Daddy learned a few lessons:
- Even :45 minutes after a baby stops feeding, they can still spit up, and spit up large quantities.
- Babies, when spitting up, do not have to move around, get fussy, or even be awake, or provide any sign gooey, partially digested, iron-rich, vitamin-saturated 1.5:1 breast milk to formula is returning to the mouth and then, with its fermented-sweet odor to drain all over a clean sleeper.
- Parents visiting their preemies in the NICU prior to going to work should carry an extra shirt with them in the car.
Always, thank you for your prayers.
No More EPO!
Hello to everyone.
Xavier was a lot more active today. It seems Rebecca's theory of tiredness means greater weight gain may be correct. He gained 50 grams and is now at 1325 gm. That's 2 lb and 14.5 ozs.
His low-flow is down to 0.04 liters/minute. Yesterday, his high-flow pump was rolled away and we said thank you to it for its service. They waited to take it away in case Xavier needed to go back on it. Doesn't look like that will be necessary.
During his afternoon care, Xavier was alert and attentive and did not fuss. He took his bottle in record time today. As expected, his feeds have been upped to 178 ml/kilogram/day (that's fancy doctorese speak for 27 ml a feeding). Still using 24 calories per ounce and 1.5 to 1 ratio of breast milk to formula.
We brought in a Dr. Brown's bottle Rebecca picked up at Babies R Us. This bottle and the associated preemie nipples were recommended by the NICU nurses (the nipples are hard to find, but the Babies R Us near us carries them--Kathy, one of the NICU nurses, buys from this Babies R Us frequently to keep a stash in the NICU for parents getting ready to take their little one home). The nurses said to bring one in and use it so Xavier can get used to what he will be using at home. It really is a superior bottle. The nipple seemed much better for Xavier and he worked it like he owned it! And, very little leaking and drooling with this nipple.
Today marked the his last EPO shot. Hallelujah! He shouldn't need them any more. Tomorrow the nurse will draw some blood for labs to check his hematocrit level. We want to see numbers over 40.
Always, thank you for your prayer.
A Very Sleepy Day
Greetings and hello to you all.
Today begins Xavier's seventh week in the NICU and his 38th calendar week. Time is definitely relative because it seems a whole lot longer than that!
Today he weighs 1275 grams (2 lb, 12.9 oz) and is 37 cm (14.57 in) long. His head circumference (I didn't even know this measurement was being taken) increased 0.5 cm since last week. As you may have noticed from the pictures, his head is Talosian in proportion, but his body is growing into it
His isolet (pod) dome remained up all through the night and Xavier did well at keeping his body's temperature at desired levels (37 C, or 98.6 F). He is wearing a hat now while the dome stays up (I would have written "a little hat", but he has outgrown his first hats, which were little!)
He had his first eye exam this morning and will have another in two weeks (and an expected two or three more after he goes home). This involved the old-fashioned technique of dilating his eyes and using a piece of equipment like a microscope to examine his retinas.
Everything looks good. His blood vessels have formed well and are close to filling out "Zone 3". At least for developmental diagnostic purposes, the retinal area of the eye is divided into three concentric, circular zones, Zone 1 the central area with the optic nerve at the center, and Zone 3 is the most outer area. When the blood vessels completely develop into Zone 3, Xavier's eyes will be considered mature. This maturing generally takes place while inside the womb, so this is good news and we thank God for it!
The eye exam did stress Xavier out quite a bit. He spent the rest of the day sleeping and was not very interactive. He slept through his PT and at his 5:00 PM cares, we left him in the pod and fed him through his NG. He was too tired even to suck his pacifier or take a bottle.
Speaking of the bottle, Xavier is a champion bottle feeder! He burned through 19 ml in record time yesterday, squeezing the nipple with authority, sucking and swallowing (gulping really). Every so often, he stops and breathes and rests, then goes right back at it! He did the same for Rebecca in his morning cares yesterday.
The doctors have some concern that Xaiver is not gaining weight as quickly as they think he should. The solution may be to increase the amount of his milk at every feeding. The doctors are not likely to increase his calorie amount as that has shown to cause weight management problems throughout life for babies who consume too many calories.
Rebecca noted that the last time Xavier was this tired, he gained nearly two ounces in a day. We are hoping that is the reason for his heavy sleep today.
Always, Thank you for your prayers.
Top's Up
Hello to everyone.
Xavier took another step closer to coming home today. He has been doing very well with his isolet bed switched to manual and letting him regulate his body temperature. He has been keeping himself at about 37 degrees Celsius (98.6 F). Today, Carrie, his day nurse, left the pod dome up after his 2:00 cares, to test him in an open crib environment.
After his 5 o'clock cares and bottle feeding by Dad, he was returned to his isolet. The environment of the pod was not kept as has been in the past (by turning on radiant heat, closing the pod, keeping up the humidity, etc). When Xavier had his temperature monitor plugged back in, he was three tenths of a degree warmer than when he came out (probably because sleeping on Dad warmed him).
Nevertheless, he maintained his temperature without assistance! Thank you, Jesus! He may need to wear his hat more often with the pod dome raised, but still he is closer to meeting his temperature self-regulation goal. The plan was to watch him through the rest of the shift (ending between 7:00 and 7:30 PM) and see how he fared. Also, keep an eye on his weight to see if he is expending too many calories keeping warm rather than growing. Our little boy is growing up so fast!
Speaking of weight and growing, Xavier dropped 15 grams since yesterday, putting him back to 1250 grams (2 lb, 12.2 oz). We are still in sight of three pounds! His daily weight fluctuations are expected and OK so long as his weekly average trends upward, which it is. His chart shows a nice curve of growth not too dissimilar from the norms, only his has smaller numbers.
It being Monday, and me being there at the right time (purely coincidental), I got to assist in measuring his length. This is done once a week, on the calendar day of his birth (Monday). This is an involved procedure.
I thought they would just lay him out and use a paper tape to measure him like they do to measure his belly girth. Nope. They have a little graduated plexiglass board. Xavier was placed on the board and the top of his head held firmly to the headboard. He did not like this and began squirming, making it difficult to get his leg straight. Once his leg was "wrestled" under control (he is getting stronger--we work up a good sweat taking his temperature at care intervals!), a slider was moved to the sole of his foot and his length read from the scale to the side of the slider. For those old enough to remember, the device looked very much like the old foot-sizing devices used in shoe stores.
He is 37 cm (14.57 in) long as of today. That's an increase of 4.5 cm (1.77 in) in six weeks.
Always, we thank you for your prayers and support.
How Much to Have a Baby?
Hello to everyone.
We got a bill from the hospital yesterday. It broke down the billing for the week starting May 10th and ending May 17th. This was the week Rebecca was checked into the hospital the last time. This seven days covers the time when Xavier was delivered. I thought it would be interesting show some of the costs. These numbers are only for Rebecca; none for Xavier.
- The room Rebecca stayed in: $14,000.00
- ICU Charges: $25,000.00
- Labs: $4,000.00
- Operating Room: $8,000.00
- Anesthesia: $4,000.00
- Imaging: $1,200.00
The only reason we got this bill was because we have a deductible for medications and we owe about a hundred dollars. We have not seen the bills for Xavier or any bill for Rebecca's first stay in the hospital. All we can say, and we say it with a sincere heart, is "Thank You, Jesus, for taking care of us!"
When Rebecca and I sign off by thanking you all for your prayers, here is a simple example of why we mean it from our hearts. And Xavier is much more precious and of much more value than the numbers listed above. God has done and continues to do great things in our lives. Great and mighty is our God!
Xavier's First Bath
Hello to everyone.
Today was an exciting day for Xavier.
First, he got a visit from his Aunt Rochelle. She brought him some little clothes and took a bunch of pictures. She even got to hold him for a few minutes while Rebecca prepared to breast feed him.
Second, after we changed him, took his temperature and wiped him down, the nurse had us remove his little preemie sleeper (it was practice for when we get him home and have to deal with the oxygen tubes). After that, the nurse removed all his wires, then prepared his pod with a little tub of body-temperature water. Rebecca then set Xavier into his first immersion bath!
He didn't know quite what to make of the experience. His senses were swamped and he began having retractions and hiccups, both signs of stress. After a few minutes, though he began to settle down and just wonder what was happening.
He even got his hair washed. When it dried, it curled upward, like a little chia pet. It looks like he inherited his father's natural curl.
Xavier put on another 15 grams and is up to 2 lb, 12.8 oz (1270 grams). His legs have finally gotten big enough that he can wear his security anklet. The anklet is required for babies over 1000 grams by the NICU Regulatory Agency, and is to be worn at all times while in the NICU. Until this week, Xavier has been too small for it.
Always, we thank you for your prayers.
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| I don't know what's going on. As Rebecca set him into the water, I told him he should remember this, as it's only been six weeks since he knew a world immersed in water. This is the first time since his birth we have seen him without monitors and wires attached to him. What a treat that was. | Maybe I do like this after all. This is near the end of his bath, and he settled down quite a bit after getting used to the water. |
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.
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.
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!