Xavier's First Week Home
Hello to everyone.
Xavier has been home a week, and, boy, have we learned a lot!
We learned not to feed him every two hours, or no one will get any sleep.
We learned how to plan out things so at least one parent can get sleep, then how to trade off so the other parent gets some shut-eye.
We learned that Xavier does not enjoy overly long stroller walks, but when he starts complaining, it's far enough away from home that we had listen to his complaints for some time.
Near the end of the week, we grew brave enough (or stir-crazy enough) to bring Xavier out of the house and into places where other people hang out. We took a late lunch today at a local pizzeria. It was Xavier's first high chair used to hold his car seat. Also, it was his first trip to a place frequented by other children. We kept his safety net over his seat to discourage others touching him.
One of the nice things this week about Xavier's late-night non-sleep schedule was he kept Rebecca and I awake, down stairs, and awake at 12:30 in the morning. We were sitting on the couch along the wall separating the room from the garage. We heard a strong sound, then the never-wanted sound of water freely coursing through the pipes.
One of the solar storage tanks (120 gallons) in the garage burst. We had a little water damage in the ceiling, but we were able to shut off the water to the house quickly enough (a feat as the water shut-off was blocked by many boxes we have not yet unpacked). This was the reason we had to grab a late lunch Saturday; we had to wait for the solar guy to come out and rig a temporary bypass to isolate the solar from the rest of the house. Mid afternoon, we had water restored to the house.
It's one thing to be without water for a while, but things get complicated with a baby. We had laundry piled up, formula to mix and a number of other things in need of water to support the baby. Plus, mom and dad needed showers!
Always, thank you for your prayers. Several people met Xavier this week who have prayed strongly into his life, and they have seen the results of their labors.
Xavier models his fleecy sleep sack. On the left, the wings are spread out. On the right, the wings wrap him like a burrito.
Growing!
Hello to everyone.
Got some sleep last night! After Xavier's midnight feeding and care, he decided to sleep...for about an hour. After fussing a bit, Rebecca held him a while and he went to sleep. So well, in fact, both he and we slept through his 4:00 AM feeding. (This led to setting Xavier's feeding times forward by two hours, which works in favor of the parents)
We visited the pediatrician again today for his "emergency" visit (after Monday's visit and after Dr. LeBlanc read Xavier's history--finally released by the hospital--she wanted to see Xavier again for another full exam. As she said, "now that I know him better")
We had three surprises with today's visit. The first was Dr. LeBlanc thought Xavier was on .03 litres/min of O2, but she was excited to learn he is on .01 l/min. So, we may only have to suffer the O2 another two weeks. Thank You, Jesus!
Another surprise to us was Xavier's stool. It turned light again about Monday. Rebecca and I asked the doctor what we aren't doing that the NICU was, or perhaps (we thought) was Xavier's growth outpacing the Actigall. Dr. LeBlanc grew very concerned, saying "that's the worst news you've told me."
Thankfully, Xavier filled his diaper and Rebecca thought to show the doctor. She told us the color was good and we shouldn't worry about it. Even though the color is not what we came to expect while in the NICU, still it was a good color. Rebecca and I were further educated about "good" and "bad" colors.
Xavier's weighed in today at 4 pounds, 5.6 ounces (1824 grams). Since bringing him home, Xavier has put on an ounce a day which is what is the rate he should be growing at this point in his development. The NICU nurses and doctors were right: he will grow better at home!
Xavier also got his rotovirus vaccine today. He was supposed to get this as he left the NICU, but they decided to let the pediatrician give the inoculation.
Xavier also ventured into his first two retail stores today. The first was The Great Harvest Bread Company" where mom and dad bought lunch. The second, next door to the first, was Two Rivers Coffee, where mom and dad bought something to drink and ate their lunch. Neither place was crowded, so we thought these would be OK places to bring Xavier.
Always, thank you for your prayers.
A Son Named Boy
Hello to everyone.
I forgot to mention Xavier's weight yesterday. He has not been weighed since Friday night, so yesterday at the pediatrician was his first weighing in two days. He came out at 4 pounds, 2.4 ounces. Wow! Dr. LeBlanche cautioned us that the scale used is different than those in the NICU. Still, that's not dampening our excitement.
We had more sleep last night than the day before. Rebecca sent me to bed at 11:00 PM. I woke at 4:00 AM and spelled her to sleep several hours.
We spent the day making appointments and chasing down the source of a very annoying insurance problem. Somewhere, someone has Xavier named "Boy". So, we keep getting bills and payments denied for Boy Ogden because no one can find a record for him. I told Rebecca Sunday we need to change her name to Jane and mine to Tarzan. Today, we learned that this is not an uncommon problem. It appears it will take another week for this problem to get corrected.
Xavier slept most of the day in his crib. In the afternoon, after his feeding and a reading of "Green Eggs and Ham", he lay wide awake, quietly watching the dangling dinosaurs on his mobile (The pterodactyl is mom's favorite critter). Eventually, and with resistance, he gave way to sleep.
Always, we thank you for your prayers.
Xavir's First Doctor's Appointment
Hello to everyone.
Today, after being a complete night owl, Xavier met with his pediatrician today. Actually, his pediatrician is on vacation, so he met his temporary pediatrician. The experience was a good one, at least for us parents. The sense both Rebecca and I carried away is we chose correctly.
After that, we returned home. I fed Xavier while Rebecca hit the sheets and slept three hours. I puttered around the house.
Later in the afternoon, the pediatrician called us. She had finally gotten all of Xavier's medical details from the NICU (it was held up because the attending doctor at the NICU did not like the original records; he thought they lacked much detail so he added it). She called to let us know a few things. In general, she thinks Xavier is doing well. She mentioned some of the things we discussed this morning and commentated on them in light of the released medical reports.
She did mention two things. One, she wanted us to make another appointment this week to keep following Xavier's liver issue. Very pragmatic, she said, "I can see the doctors there [at University Hospital] scratching their heads over this problem. He's a very complicated little man." She reminded us of the possibility of surgery (sooner than later) if they determine his gall bladder ducts are occluded. So, we return on Thursday for more blood draws.
She also cautioned us with "Even though he is out of the hospital, he is still fragile."
We fired up Xavier's wheels this evening, snapped on his no-see-um netting and strolled around the local park. Rebecca and I debated a while about the stroll, especially in light of the earlier discussion with the pediatrician. But, we decided that avoiding crowds is OK for now, but we don't want to raise a Martian (think H G Wells).
Rebecca said there aren't enough pictures of me on the blog and wanted to post this one.
Rebecca likes this photo. She says I look like a proud dad.
Thank you for your prayers. Victory is in the hand of our God!
Xavier's First Day Home
Greeting to you all.
As new parents on our first night and day of full-time parenting duty, sleep was a luxury for all of us. Xavier slept well in his bassinet while I did laundry and Rebecca took a cat nap on the couch. It wasn't until 3:00 AM that Xavier decided to get fussy. Of course, not until after Rebecca came upstairs to spell me and let me get some sleep. I finished feeding him, put him to bed, kissed my wife then turned in.
We tried hooking Xavier up to his pulse ox monitor, but after many attempts, we decided not tonight, we're too tired.
After a few hours sleep on Sunday, I got up and spelled Rebecca, letting her catch about four hours. Xavier and I retired to the basement where he slept much of the day while daddy puttered about the house.
Stacey and Donna, two of Xavier's nurses from the NICU called and spoke to Rebecca. They wanted to know how we did the first night, how Xavier did and did we have any questions. Once again, University Hospital demonstrates its exemplary care to its patients and patient families. We did have questions!
Xavier got to spend several hours in his crib this afternoon. He even watched the mobile for a while.
I finally got around to assembling Xavier's stroller. It lay unassembled in the nursery near the changing table. This afternoon, during a momentary lapse of coverage, Xavier shot a stream which, among other items, hit his stroller. I figured, since he marked it as his, I might as well bring it on-line!
The evening and night went similar to last night, except tonight we managed to figure out the pulse ox. Xavier is not sleeping on his NICU schedule. We were all hyped up that he would be well-trained on his sleeping and feeding schedules: every four hours. Well, not so much, at least so far.
We think it is because so many things are different. It's darker than he is used to (we've noticed when we turn on his bassinet light he clams down). It's quieter. He is handled by fewer people. The smells are different (it smells like Simulac everywhere now). The feel of his beds are different. Xavier is having to relearn some things. Hopefully he will acclimate quickly.
Always, thank you for your prayers and support.
Xavier Michael Comes Home!
Greetings to all, friends and family!
Glory to God! At 42 weeks 4 days, and nearly 12 of those weeks in the NICU, Xavier Michael came home today!
With faith and expecting to take him home today, we arrived to the NICU at 3:00 PM. Yesterday we arranged to have the Apria people (Apria is the firm who manages Xavier's oxygen outside the NICU) meet us to give us Xavier's mobile O2 tank and explain its use. Also, because Xavier Bradied Thursday, Apria supplied us with a portable heart and oxygen monitor (a mobile pulse ox monitor). We thought all the wires were being left behind, but not so much. We only attach Xavier to the monitor at night so we can get some sleep (at least that's the theory!) Also, the monitor will be used to collect information and data when the doctors prescribe room air tests and other tests to help determine when he can come off O2.
While we where packing up and waiting on the two different Apria people, and as the nurses and doctors worked on the discharge papers, we also finished checking off the boxes on the Discharge Worksheet. During this time, a good friend of ours stopped by to visit. Brenda was in the area for a conference and I do not think she knew we were checking Xavier out. Quite frankly, neither did we; we were not sure it was going to happen until it started happening!
With no more connection to him, the monitor which has showed Xavier's heart rate, oxygen saturation level, breathing rate, and being the ever-vigulant sentinel and the alarm of so many Bradys, desats and high-sats since May 13th, after 68 days, finally goes dark.
Weighing in at 1810 grams (4 grams short of 4 pounds), Xavier sits strapped in to his car seat (no car bed, Hallelujah!) waiting for mom and dad to say their farewells to all the NICU staff. Also, we were delayed by a tornado watch and people were asked not to leave the hospital just yet. Xavier is still a little too small for the harness. Stacey rolled up a wash cloth and threaded it behind Xavier's back and another to fill the space between his knees.
Xavier's address for the last 68 days. With the sense one has when moving from a home to another, we bid this little cubical goodbye.
The long-awaited day and the culmination of so much prayer. Xavier is home at last! Held by a proud and happy mom, shortly after this picture, we three huddled together in a family embrace, bowed our heads and thanked Father for His goodness to us.
Great is our God Who has led us this far and will lead us from here! Thank you all for your prayers.
Next, the Driving Test
Hello friends and family!
It sounds cliche, but they do grow up quick. Just a couple of weeks ago Xavier was steering his pacifier, and today he passed his car seat challenge! What for next week, his driver's license?
Xavier weighed in at 1790 grams, an increase 28 grams, bringing him to 3 pounds, 15.1 ounces. He is a mere 24 grams from four pounds.
Xavier Bradied once yesterday. Arrg! However, the doctors have decided he is 42 weeks and he needs to leave the NICU. So, in addition to oxygen, Xavier will be sent home with a pulse ox (that is the little sensor you can see on his foot in several of the posted photos; it measures the oxygen saturation level in his blood). The pulse ox also measures heart rate, although slightly delayed from the three sensors currently affixed to his chest. Now, Rebecca and I are armed with a more accurate way to detect Bradys at home.
Yes! It looks like Xavier is coming home, and he's coming home this weekend more likely than not.
Saturday, Rebecca and I are meeting with the oxygen supply company at the NICU. They will instruct us in the use of his portable oxygen tank and how to manage the pulse ox and its monitor.
We picked up his prescriptions this afternoon, his Actigall, iron supplement and vitamin concoction. We have made his first pediatrician appointment for Monday, and he has an eye exam scheduled at Children's Hospital Tuesday.
Great is our God and He is awesome in all His ways. Thank you all for your prayers.
Yes, that's Xavier strapped into his car seat. Look closely, he's in there! Even the small baby insert is too big for him.
Strapped in and ready to go. We had to wait for Xavier to go to sleep before strapping him in and starting the test. The idea is to have Xavier at his most vulnerable for Bradys, which is when he is resting or asleep. He sat, strapped in to his seat, for :90 minutes. He slept most of the time.
1.8 Ounces Away
Greetings to everyone.
Xavier is at 1762 grams today or 3 pounds and 14.2 ounces. He has had no more Bradys since Tuesday. We are thinking his several Bradys earlier this week were side effects of his inoculations.
Tomorrow, the medical staff will discuss his release in more detail. Sunday is day five for his new round of "Brady watches," so we are hoping Monday may be the day. Still, it could be sooner.
Jen, his nurse today, said he may actually have his retest of his car seat challenge in his car seat instead of a car bed since he is a mere 1.8 ounces away from four pounds! We'll see what tomorrow brings us.
Not much news other than what is reported above today. It is beginning to feel, at least on some level, like our family is coming together into a stream of normalcy. Your prayers have helped with this, and we thank you for them always.
A Little Too Cool
Greetings to everyone!
Another quiet day, unless your name is Xavier Michael Ogden.
Last night when I wanted to leave the NICU, Xavier was sleeping soundly on my chest. "This is a good time to put him back," I thought. "He will sleep another two or three hours before needing to eat again." Famous last thoughts.
The moment I put him back in his crib, he started fussing. His fuss started in low, then it started to grow. I held him and he quieted down. Put him back down, and he fussed again.
I changed his wet diaper, but no joy. Then, thought I, he wants more to eat, even though it's only been two hours. He took 20 cc, then seemed to settle. Seeing him go quiet, I departed.
Today, we learned he was awake all night. The nurses had to carry him around with them for him to be still and not cry (this means wheeling around an oxygen tank also). The reason, we think, was that he was too cold. His temperature was around 36.5 all day and for Rebecca 36.3 (36.5 is as low as it should go). The NICU has been having some heating/cooling problems since Monday's big storm, so the area has been cooler than usual.
Changing him out of his onesie which had no legs or arms helped him settle. He only put on 13 grams overnight, another suggestion he was too cold. When we left him this afternoon, he was sleeping well and not fussy.
Speaking of weight, with his added 13 grams, he weighed in at 1725 grams, or 3 pounds, 2.8 ounces.
Other than this, things are quiet. Thank you all for your prayers and your support.
Hearing: Check
Greetings to everyone.
Today was a little less stress-filled than the past few. Xavier had another two Bradies today, so it's official. Five more days in the NICU. I think he likes the NICU. There he has several grandmothers, aunts and older sisters taking care of him 24x7.
He ate well for Rebecca and for his first two feedings earlier in the shift. He took another 50 cc from me about 2 and a half hours after Rebecca left, then another 20 cc from me before I left two hours after I fed him the first time.
After feeding, he has started more often than not to look around or just lay there with his eyes open. He's acting like a term baby his age.
As I held Xavier today, I noticed his wrists have taken on a little bit of a chub. He is getting a little brown fat on him finally.
He was in a good mood for his hearing exam today. He passed. This is a screening only, and not a true measure of his hearing. Remember back to grade school: the line into the gym, the booth, the headphones, the high-pitched tones, the raise your right hand, raise your left hand? That's what this screening was, only (supposedly) more high-tech.
We expected Xavier to pass the screening; he follows sound around with his eyes and has for weeks. When I speak to him while he eats, he looks up at me. When mom speaks to him from a different direction, his eyes move over to her. Not only is he hearing well, he associates correct direction for the sounds he hears.
As I opened with, not too stressful of a day today. Thank you for your prayers. Our God reigns!
As, Bs, and a Little Too Much Bilirubin
Greetings to everyone.
As you may have picked up from yesterday, Xavier did not come home today. The reason was he had two Bradies yesterday, one during his car seat challenge and one laying in his crib. He also had an apnea event. As the medical staff say it in rounds, he had one A and two B's on Sunday.Ordinarily, his "A and 2 Bs" would reset the clock to him needing another five days of observation. This still may be the case. However, the doctors are considering releasing him sooner, perhaps this week still. It is possible his A and Bs were related to his immunization shots he got on Saturday. We'll know more later on, hopefully with a notice not so dramatic as last Saturday.
We will be given a car bed by the NICU. They will hold on to our car seat until we return the bed. It seems Xavier will have his next car seat challenge in a car bed.
Other good news: the doctors have taken Xavier off his "three hour" ad lib schedule and let him return to a true ad lib schedule for eating (not to exceed four hours without eating, however. Apparently, no baby his age and size should be going more than four hours without eating). The "three hour" modification to his ad lib schedule was to try and get Xavier to take an extra feeding during a shift as a way to help him gain weight. He's doing well enough with his feedings, the extra one being "snuck in" is no longer necessary.
Tomorrow, Rebecca and I will meet with the oxygen guys at the NICU and get Xavier's mobile oxygen tank. They will instruct us how to use it. This is exciting because it means Xavier is getting that much closer to being home!
Tonight, Xavier weighed in at 1712 grams, a loss of 4 grams from yesterday. The nurse had not measured his length yet when we called, but will do so during his next set of cares.
Rebecca drove down from Cheyenne late in the afternoon and met me at the NICU. We learned how to mix formula. Xavier will be coming home on 26 calories per ounce, but is expected to be weened down to 24 calories per ounce later on. We have recipes for both, and now the (academic) skills to make it happen. Next on our agenda: rocket science!
I had a chance to speak with this rotation's attending physician. I asked him about Xavier's lungs; they were of great concern through most of the last eleven weeks leading up to his delivery, and for some weeks after. He even participated in a (now de-funded) study involving preemies and lungs.
Dr. Jim did not think there will be any complications or problems with Xavier's lungs (Thank you, Jesus!). He may be a little more sensitive to pet dander and dust for a while. He may also have a slightly more difficult time if he contracts any respiratory issue (like a cold or something). As he grows and continues to develop, even these sensitivities will disappear.
The one lingering issue developmentally that we know about is Xavier's liver. His bilirubin count has consistently been high, around 2.4. Any of the fluctuation we have seen has probably been within the standard error of the lab tests.
What happens frequently with IUGR (in-utero growth-restricted) babies is a major artery feeding the liver (I think this is the hepatic artery) develops differently. The artery actually starts to bypass the liver. This is what Dr. Jim thinks happened with Xavier, he developed a partial bypass. A day or two before his delivery, this very liver artery was checked via ultrasound and Dopplers examined. Everything looked good. However, the ultrasound cannot detect a "splitting" of the artery. Because the artery partially bypasses the liver, the liver cannot clean the blood as efficiently, and hence the high bilirubin count.
Did this artery take a partial bypass in Xavier? That is unknown at this time, but likely based on the history of bilirubins and its common occurrence in IUGR babies. Dr. Jim explained that they (doctors) haven't gotten very good at being able to measure this kind of issue. However, the liver is a strong organ and very good at regenerating itself. The artery, Dr. Jim said, will likely self-correct over time.
Not wanting to leave Xavier's liver health in the hands of the unknowns, maybes and mights, we are asking Father to intervene.
On Saturday, Rebecca and I discussed circumcision with the doctors. Wow, what an education in how that is done! There is a special device called a plastibell which fits up underneath the foreskin, both protecting the head of the penis while creating a tiny operating area where the blood vessels can be clamped off and the foreskin cut away in a very precise and clean manner. Part of the plastibell stays in place to help protect the area while the area heals. The device looks much like its name suggests: a plastic bell.
Xavier is a little small for the procedure (the smallest plastibell was just a little too big). Also, the doctors did not want to do it so soon after his immunizations were given.
Thank you all for your prayers. Awesome is our God!
Five More Days?
Hello everyone.
What a day! We started the morning visiting Xavier. Rebecca changed his diaper and held him a while before driving to Cheyenne. I stayed behind to feed him and wait out his car seat challenge (we brought in the car seat this morning).
Xavier passed his room air test last night with flying colors, but we had expected that. He did, however, drop 5 grams in weight, bringing his weight to 1680 grams. His weight drop is due to the fact Xavier did not sleep much last night, probably a reaction due to his immunizations. This is common for the first day or two after the shots.
His hearing screening got scheduled this morning, but it did not go well. Xavier was just too fussy, so it had to be rescheduled for tomorrow morning. I was expecting something like some finger snapping and response observation, but not so. Three electrodes are attached to his head, one behind each ear and one to the front of his head. A little sonic emitter is placed in his ear and a computer program took over. It's reminded me of an automobile emissions test.
Xavier no longer has his isolet. It was nowhere to be seen when we walked in this morning. He made it into a crib. Finally, at the end of his stay, he got into an open-air crib! His gel pad (used as a shape-conforming head and should pillow) he has known the last ten weeks was also gone. I was sad to see it go, but it's one of the things not allow in a crib. The open crib environment is supposed to be as close to a normal crib as possible. The only thing allowed in a crib is Xavier, on his back, swaddled or in a sleep sack. That is how we found him in his crib (he was swaddled and gone was his sleep sack)
I spent the rest of the day tracking down a reasonably priced, functional bassinet. Finally found one that will work for our needs. One would think this task would have been simple. Apparently, you can't just get one multi-functional bassinet; you must buy several single-function bassinets.
Xavier's car seat challenge did not go on schedule. He was just too fussy this morning and this afternoon. It would be done later in the day. I waited until 9 o'clock to call the NICU to find out how he did. Sadly, Xavier failed the car seat challenge. He bradied.
This was an important test (sitting, not laying down in his car seat for 90 minutes with his oxygen). The penalty for not passing this test is a stiff one: another five days in the NICU. At least that is how it is looking now. We will know more after rounds tomorrow morning.
We also learned our car seat (the smallest we could find) is still too big for Xavier at the moment. That means a car bed to bring him home (unless he bulks up in the next few days). The good news is the NICU has four new beds coming in on Tuesday and the NICU will loan one out to us. That's exciting, and cheaper: we don't need to buy something we are only going to need for a couple of weeks. (Although, I am bummed we don't get to buy one, use it, then donate it to the NICU).
Still, in the midst of this, Xavier weighed in tonight at 1716 grams (3 pounds 12.5 ounces), an increase of nearly an ounce, and a breaking of the 1700 gram milestone.
We thank you all for your prayers. Our God reigns and He is good!
Xavier in his crib. You can see (very darkly lit) his car seat in the background. Even though Xavier did not pass the challenge today, we are many steps closer to bringing him home!
Excuse Us, Did We Hear You Correctly?
Greetings to everyone.
Today's events went something like this. Rebecca and I arrived at the NICU for our Discharge Class, a one-hour training session on how to handle our preemie at home. The class covered CPR, managing choking, crib safety, bottle safety, baby-proofing the house and several other items. In the class were representatives from the Parents' Advisory Board. This board is made up of parents whose children have come through the NICU and they help advise the NICU on how to improve their service and make things better for the parents who come after them. The three ladies in attendance this morning were a wealth of information. My only suggestion to them was "where are the husbands?" They did say they had a "token man" on the board, but he couldn't make today's meeting. Apparently, my suggestion volunteered me for the position, and I may take it!
After the class we visited Xavier. As we approached his pod, Valerie (who cared for him once early on) greeted us with "I hear you're leaving us Monday."
The announcement stunned us. It was a train that came out of nowhere and it took several hours for Rebecca and I to recover from the shock. Just Friday (yesterday), Allison told us it would be between 1700 and 1800 grams and was unlikely to be next week. What happened?
A new doctor rotated into the NICU today, that's what! Plus, Xavier in his desire to go home, put on 60 grams and is now at 1685 grams (3 lb, 11.4 oz). I guess the new doctor thought that was close enough.
Xavier must pass two more tests: 1) his "room air" test; and 2) his car seat challenge. The room air test is a test where his oxygen tube is removed for :40 minutes and he must not desat or have any Bradys. This will happen tonight.
The car seat challenge, though he keeps is oxygen tube, he must do well sitting in his car seat for :90 minutes. We are hoping to have this test tomorrow.
Rebecca is going to Wyoming Sunday morning to participate in a change of command at the Wyoming ANG and to celebrate the retirement of the current wing commander, Col. White. The plan is for her to spend the night in Wyoming and return Monday.
Monday, I had hoped to schedule some time with my manager to work out how best to support the client in Arizona with the new release of software they are testing (the release for which I am the primary developer) when Xavier comes home. I announced my intent to take a few days off, but at the time I thought it would be a week or so out at least.
Needless to say, Val's announcement caused us to fast-track several things! It is exciting Xavier is mere hours away from being home! And, as with everything else revolving around Xavier, we find ourselves on a compressed time schedule which has ambushed us. (I originally wrote it snuck up on us, but Rebecca strongly disliked that term. "There was no sneaking," she contended)
Rejoice with us, Xavier is coming home! Thank you for your prayers, they have made this day sooner than expected. Awesome is our God!
This is Xavier's discharge worksheet. Though not yet physically checked off, several items have already been achieved.
It's A Race
Hello friends and family!
Today, Xavier has reached 1625 grams, that's 3 pounds, 9.3 ounces!
Yesterday, Xavier (unknown to anyone) decided to give himself a practice "room air test." He pulled his oxygen tube completely off and for :20 minutes or so breathed room air in his open pod. Rebecca was the one who noticed his disconnect from his oxygen. No alarms sounded, no bradys and no desats during this time. In fact, he was hi-satting the whole time. Hallelujah!
Dr. Liz mentioned in rounds today that Xavier should be able to go home when he reaches (some undefined weight) between 1700 and 1800 grams (3 lb, 11 oz to 3 lb, 15.5 oz). Glory to God! And a little scary as well. Xavier is only 75 grams shy of the minimum. Now, it's a race. Will he reach 4 pounds first and we can use our newly purchased car seat to carry him, or will we have to scramble and overnight a car bed to us.
If we do need a car bed, it will not be for long. We can donate the bed to either Children's or (our preference) to the NICU. There are three preemies under four pounds ("peanuts" as our case worker calls them) waiting to go home about the same time. The NICU only has two car beds to loan out, and they are currently loaned out. It would be nice to sow something back in the NICU.
An event occurred today that shows how involved in the details of Xavier's development we have been. When Rebecca went to put Xavier back in his isolet, while managing all the wires and tubes, she bumped Xavier. While he loudly let the world know about his discomfort. Rebecca's first thought was not, "Oh, baby, I'm sorry you're hurt." Instead, it was "Thank God he is developed enough to feel, recognize and react to pain."
Thank you all for your prayers. Great and mighty is our God!
Here Xavier is practicing another going home skill. He is inside a preemie-sized sleep sack. The purpose of this item is to keep him on his back and safely immobile while in a crib. It's essentially a baby straight jacket, only more comfortable.
Xavier close up. The red modeling is from his recent immersion bath. We used his little scalp brush to exfoliate his head. He is also recovering from his first round of inoculations, three shots given, two at the same time so he only knew two moments of discomfort. Of course, he was loaded up on sugar.
The Goodness of God
Greetings to everyone.
Today is Xavier's 61st day of life out of the womb. As mentioned earlier, we first saw Xavier via ultrasound at 61 days and Rebecca was checked into the hospital the last time 61 days after her first check in on March 12th.
There is a hymn called "When Upon Life’s Billows You Are Tempest Tossed". The words are:
When upon life’s billows you are tempest tossed,
When you are discouraged, thinking all is lost,
Count your many blessings name them one by one,
And it will surprise you what the Lord hath done.
Count your blessings, name them one by one;
Count your blessings, see what God hath done;
Count your blessings, name them one by one,
And it will surprise you what the Lord hath done.
Are you ever burdened with a load of care?
Does the cross seem heavy you are called to bear?
Count your many blessings, every doubt will fly,
And you will be singing as the days go by.
When you look at others with their lands and gold,
Think that Christ has promised you His wealth untold.
Count your many blessings, money cannot buy
Your reward in heaven, nor your Lord on high.
So amid the conflict, whether great or small,
Do not be discouraged, God is over all;
Count your many blessings, angels will attend,
Help and comfort give you to your journey’s end.
I have wanted for a while to review how good the Hand of God has been to us as we have walked through this life event. There is no way I can list His blessings to us one by one, but here are a few.
Thinking where to start, I had many points to choose from. I decided to start with the young woman we met in Cambodia who was so greatly concerned for Rebecca and I at being so old and having no children. She told us "Remember Abraham and Sarah were old too. I'll pray for you!"
While in Rome last year, out of the blue a strong sense of peace, comfort and "rightness" swept over me and I thought "I would OK with having a child." A week later we learned Rebecca was several weeks pregnant.
In February it was determined during an ultrasound exam that Xavier was growth restricted and the perinatal doctor of 20 years, well-spoken and a leader in the field, was highly skeptical of Xavier's chances for survival. She asked "Is termination an option for you?" Of course it's not an option for us! Xavier defied the common wisdom of man and survived.
March 12th was a standard ultrasound exam. Only at the end as we neared leaving did randomly we mention Rebecca's high blood pressure. This statement turned to a blessing in a (very) deep disguise which led to giving Xavier another eleven weeks inside the womb.
When admitted to the hospital, it was expected that Xavier would be delivered that night and put in hospice. A night turned into a week, and a week into five. We had a perinatal specialist on our case who had only been at the hospital ten weeks before we checked in, his expertise was in exactly what we needed. He had worked with mothers having Rebecca's symptoms for years and had far more experience than the doctors here in Colorado. He helped silence the voices of fear from other doctors, who had not seen anyone like Rebecca before.
We transferred to a world-class hospital which housed some of the best baby doctors in the country. We were surrounded by experts who, confused by what they could not explain, continued to give our case great attention. One doctor proudly told us "Your baby continues to prove me wrong!"
Talk and signs of genetic abnormalities, some quite grizzly, abounded during the first five weeks of hospital stay. Not one of them turned out true.
"Your baby is sick," we were told during and early NST exam, and a pall fell over us. Then, in the silence of the settling depression, the monitor blipped and the same doctor with the dire news smiled. With an almost giggle, she explained the blip was a hiccup and showed Xavier's nervous system was developing well. After, she reviewed Xavier's NST histories, then told us he was not so sick after all.
Though Xavier had low levels of amniotic fluid throughout the pregnancy, he always had enough and always in the places he needed it when he needed it. This was especially true during the key time of his lung formation.
We heard weekly that Rebecca would go pre-exclampsic. She did, but eleven weeks beyond what was expected. As the high-risk doctor told us the day after Xavier was delivered: "You carried the baby up to the last possible minute" and "we did all the right things." This going to the last possible minute allowed Xavier to develop all he needed to strongly survive outside the womb.
A few days before Xavier was delivered, Rebecca was checked back into the hospital. This was, at the time, a major kick to our morale. We were expecting and wanting mid June, not the beginning of May. As it turns out, had we not been in the hospital, Rebecca and Xavier may well have died. None of the pre-eclampsic symptoms we were taught to look for ever occurred. We never would have recognized the danger Rebecca was in.
When Xavier was delivered, he squirmed and he screamed loudly. His scream was not one of discomfort, but one of being disturbed, as if he were telling us "What are you people doing? I'm fine." The doctors were very concerned about his lungs, but he let them know immediately they were working well! He was perfectly formed. He was brought forth after all his critical development had happened within the womb. Even his intestinal tract, which the doctors had concerns did not form well and may turn necrotic, worked well. His liver needed to mature more, but even it continued to develop.
He took to his mother's breast and to the bottle so well, the nurses and therapists could hardly believe it and they praised his quick-learned skill.
Throughout all of this, and especially in the face of the medical professionals who hammered us constantly with negative after negative, both Rebecca and I held on to the constant, deep-seated peace, the assurance from Father His hand was mightier than the forces of fear.
So many people stood with us in support, both in physical and emotional support, and in the most important support: prayer! We were blessed with people offering aid and prayer from all over the country and from all over the cities of Denver and Fort Collins.
So, how is Xavier today? He broke the 1600 gram milestone and is at 1615 grams (3 pounds and 8.9 oz), nearly two pounds more than his delivery weight.
Having crossed the 1600 gram milestone, his pod dome is once more raised to let him fully regulate his temperature.
He eats from the breast and bottle like a champion. He is down to 0.01 liters/min oxygen through a low-flow system and is hi-satting more often than he desats, the majority of the time his oxygen level is 94 and above. This morning he managed to pull his cannula out and no one noticed for some time. He was breathing room air without desatting or bradying.
His direct bilirubin level is 2.4, still high, is much improved (Father has not led us this far to abandon us now. It will get to normal values!). Dr. Liz went "dumpster diving" today to get his diaper. She has not seen one of his stools this rotation. She was pleased as punch with the color and could not stop talking about it and what it means. She spoke of how proud she was of Xavier and impressed.
Great is the power of our God! Great are His mercies! Great is His love toward us! Great and mighty is He to those who seek Him and trust in Him!
To those who have prayed for us during this time, the miracles and goodness I but touched upon above, you had a part in praying them into this world. You helped carry Rebecca and me when we were too exhausted to carry ourselves. Always, and with heart-felt gratefulness, we thank you for your prayers and support.
The Micro Preemie
Greetings to everyone.
Pampers has released a new diaper size called "Micro Preemie". The NICU just got them in yesterday. These are sized between the smaller ones Xavier has outgrown and the way-too-big diaper he has been wearing the last few days. The new diaper works well and is the right size for Xavier. The nurses like them also and many of the other babies are wearing the Micro Preemie.
Xavier had his eye exam today, having his eyes dilated about 7:30 AM. No word on the results, but Allison, his nurse today, said he has another scheduled in two weeks. She explained that is a good sign. had they found something bothersome, they would have scheduled another exam much sooner.
Xavier is 1580 grams today, a gain of 10 grams. That's 3 pounds 7.7 ounces. He is also down to 0.01 liters/minute on his oxygen. He's been down as low as 0.01 for a while, so it may be he's about to drop down another hundredth of a liter.
After visiting Xavier tomorrow morning, Rebecca will be heading up to Fort Collins to oversee the installation of vinyl flooring in the kitchen and utility room of the Northern Outpost, and to arrange the proper disposal of several containers of chemicals.
Always, thank you for your prayers. Great is our God!
Here, against the scale of a US Dollar bill, the Micro Preemie (left) and the bigger diaper Xavier had been wearing for a few days. Above, Xavier sleeps soundly, comfortable in his own Micro.
Congratulations, Mrs. Ogden, You're the Mother of a Healthy Baby Boy!
Greetings and hello to everyone.
Today is Xavier's "official" due date, at least based on the math using the first day of the last period. Using the knowledge from our first ultrasound at 61 days, we know exactly the day of conception, so Thursday is Xavier's true due date. It was, however, the doctors at PVH who decided to use the OBGYN formula so they could get Rebecca and Xavier checked in to University Hospital as soon as possible, for which we are all grateful. Xavier came early anyway, Rebecca's body overrode both dates. Always a lesson: plan your future, but trust in God always. With much prayer and supplication and the goodness of our God we are in a good place today.
On his official due date, Xavier weighs 1570 grams, an increase of 25 grams over yesterday, bringing him to 3 pounds and 7.3 ounces! That's up 650 grams (1 lb, 7oz) from his delivery weight of 920 grams (1 lb, 9 oz). His length is 41.5 cm (16.3 in). His length at delivery was 33.5 cm, or 13.2 in. His head circumference is 31.5 cm.
Xavier is scheduled for an eye exam on Wednesday. We expect to learn everything is healthy and well-formed and/or forming well.
Rebecca made it down from Fort Collins earlier than expected today, making the NICU about 3:45. The movers had the house packed up and loaded in three hours! We set a lot of things on the curb for anyone to take, and, with the exception of some baskets and decorative boxes, it's all gone!
We have an unusual sign in the front window of the Northern Outpost. It reads: "NOTICE THIS HOME IS FOR SALE ONLY! CRAIGSLIST listing is a SCAM & you could lose money & not have a place to live!!! *PLEASE DON'T REMOVE SIGN IN YARD*"
As we were closing up the back of the moving truck Saturday morning and ready to head south, a family stopped by to look at the house and asked us "are you coming or going?" They had a lot of information about the house, most of it accurate, including Rebecca's name as the second owner. Turns out, some scammer posted the house on Craig's List as a rental ($600.00/mo) and was asking for first and last month's rent. Jan, our realtor, had 21 or more calls on the property, all inquiries about its rental availability. The house doesn't begin showing until Friday! Apparently, Fort Collins is being hit hard by this type of scam.
Thought that was an amusing item to share. Always, thank you for your prayers; they brought Xavier into the world sooner than we planned, but they have all been needed. We definitely have had to trust God and cling to His goodness with white-knuckle grips throughout all of this. Rejoice with us today, Xavier's official due date!
Here is a picture Rebecca took of the sign hanging in the window, alerting people to the Craig's List scam.
The Crib Gets a Mattress
Greetings to everyone.
Xavier is doing well, bulking up to 1545 grams, which brings him to 3 pounds and 6.5 ounces! Glory to God! He may yet get to four pounds before leaving the NICU!
Rebecca was delayed in getting the the NICU today due to the late arrival of the people trimming the trees at the Southern Outpost. It was late enough in the day that when I walked in, she was just putting Xavier back into his isolet. He was very fussy for her today, and at one point threw one storm of a tantrum, complete with back arching and his face turning beet-red. The nurse thought he might be gassy. Sure enough, after he spit up an epic amount and filled a diaper at the same time, he calmed down. It's really interesting in learning how he communicates his needs, discomforts and desires.
Rebecca and I spent another hour and a half with Xavier, then left to buy some more supplies for his immanent home-coming. We still needed a mattress for his crib, so we picked one up. We also picked up his "Travel System" which has the all-important car seat with it (we are hoping, and some of the nurses have advised us, that Xavier may not need a car bed after all. "Things can change fast," was one nurse's advice. "I suggest you wait until the day before taking him home before you buy a car bed.")
We also scoped out bassinets and bassinet systems as we are still trying to figure out Xavier's initial sleeping arrangements. We need to be clear on this because the oxygen supplier will set up our house based on our decisions. We are thinking Xavier needs to be in the room with mom and dad initially, at least while he is on oxygen.
Rebecca and I are also considering signing up for a "practice room" at the NICU. There are rooms there for parents to stay in over night to practice caring for their NICU baby in an environment where help is literally a shout or button-press away.
Always, we thank you for your prayers. It is so exciting as the day grows more near to bring Xavier home!
Our little man was loudly complaining, but once he got used to the bath water and got his pacifier, he quieted down and stopped squirming. How wonderful to see him without oxygen tubes and heart, blood and temperature probes attached to him! For Rebecca, this is a first to see him this unencumbered.
Xavier's first pants. When Penny, Rebecca's mom, was out here, and after seeing Xavier's size, she went shopping. Even now, these pants are too big, but he just graduated into a bigger diaper (a size too big for him, but they don't make a size in between and he was "blowing out" his smaller diaper and messing up his clothes). The bigger diaper fills out the pants, which are snugged up to his ribs. The little onsey is also something Grandma found. "Thanks, Grandma! I love the freedom these give my legs."
A Short-Run Weight Trend
Hello everyone.
We managed to get most of the Northern Outpost packed up this past four-day weekend thanks to the help of so many volunteers. We had several people drop by throughout the day Friday to help pack and load. Rebecca will be back up on Tuesday to oversee the professional movers pack up what is left.
We were blessed on Saturday by a neighbor of the Southern Outpost offering to help unload. Our friend Roger, whom I have known since college, was on his way down from Boulder to assist us, but Tom from across the street seemed eager to roll up his sleeves; I couldn't say "no". Rog did get to help move some of the more awkward items. Plus Roger was the only volunteer this weekend who stayed around long enough for us to feed him lunch to thank him for his help!
After enjoying a late lunch and Roger's company, Rebecca and I visited Xavier late Saturday afternoon. We walked in on a new nurse, Jody, a woman with four boys of her own and still full of energy, she radiated joy, fun and encouragement. She was just finishing up changing Xavier's diaper. As we approached, she was talking to herself and commenting on the color of the diaper's content. It was a good color and she was impressed. So, after introducing ourselves, we began to get to know Jody by talking stool. Xavier's liver function seems to be improving.
Last week, the day Xavier's isolet dome went down, the doctor and dietitian decided to increase Xavier's calorie count from 24 calories per ounce to 26 calories per ounce. This, in combination with being back in the isolet is hoped to help Xavier catch up on his weight gain.
Friday, he gained 35 grams, bringing him to 1485 grams. Saturday Xavier weighed n at 1490, a gain of 5 grams. Today, he weighs 1500 grams, or 3 pounds 4.9 ounces.
We ran into Dr. Liz, who rotated back into the NICU. She praised many things about Xavier's development, including saying Xavier looked like a "baby doll", but said she was not liking his slow growth. This has led to moving Xavier to a three hour feeding schedule. Though he is still on an ad lib schedule, the thought is he may take an extra feeding and get a few more calories during the day.
We are expecting another eye exam this week, probably Wednesday. Xavier will also be having a hearing test, but that, it was explained to us, will likely be the very day he leaves the NICU because those who do the test are volunteers and are always last minute in scheduling the test.
Xavier will also be getting his first round of inoculations soon.
Always, thank you for your prayers.
Rebecca helps prepare Xavier for his second immersion bath. He's is not all that happy about being wakened, handled and not being fed.
Though Xavier was not as stressed by being set into his bath this time, he was very upset about not being fed first and he wasn't buying the rationale of bath first, dress, then food. He did settle down eventually. We had a new tool in the tub this time, a little scrub brush to help exfoliate his scalp.
Temporarily free of all his wires and oxygen tubes, and clean and freshly dressed after his second immersion bath, Xavier posses with his mom and dad. Waiving at the camera, he thanks everyone for their prayers.
Happy Fourth Of July!
Hello to everyone and Happy Fourth of July!
Our plan was to head north this morning with the 16-foot U-Haul we rented last night and start packing up the Northern Outpost. We had resigned ourselves and told the nurses we would not be in to see Xavier on the 4th or 5th because of the moving process. Both Rebeca and I decided, "it's the Fourth and what is the hurry to get moving?" (no pun intended). Everyone helping us pack volunteered their time on Friday or Saturday, so we decided to spend a couple of hours with our son. This made the long weekend easier to bear.
Xavier packed on 30 grams on Wednesday (3rd) bringing him up to 1420 and added another 35 grams as of last night for a total of 1455 grams, or 3 pounds 3.3 ounces! Perhaps the pod dome being down is helping, but more data are needed.
Also noteworthy (and praise-worthy) is Xavier is free of another encumbrance: his feeding tube! It's gone, and on purpose (he didn't sneak it out and hide it under his snuggy). All his meals are now by breast or bottle. Even his medications (the vitamin supplement, his iron and his Actigall) get mixed into his bottle. Father, thank You!
This happened on Wednesday morning. Rebecca noticed it and called me to chide I hadn't told her his NG was removed (I was there in the morning due to our tight schedule Wednesday). I had not noticed its absence, but was excited to hear the news! Thanks You, Jesus!
Always, we thank you for your prayers.
Laying on his patriotically dressed bed, Xavier has no idea the excitement awaiting him later in life when he can celebrate the birth of so great a nation. Hidden under his swaddle, his onesy also has patriotic pictures.
Rebecca holding her son before we head north to help pack up the Northern Outpost. It's hard to leave him, and tomorrow will be the first break in continuity for Xavier in seeing his parents every day.
Pod Dome Down
Hello to everyone!
Today marks one week before Xavier's due date. He weighs 1080 grams (3.04 pounds) and is 38.75 cm (15.25 inches) in length today, and began his life out of the womb eight weeks ago.
This morning, one of the doctors overheard the nurses discussing how Xavier cools when he is feeds. He asked some follow-up questions then wrote orders to have the isolet's dome down when Xavier is in it. Xavier gained a mere 30 grams over this past week and the doctor thinks it is because he is expending his calories keeping up his body temperature rather than growing and adding ounces. (His pod dome has been up the past week)
Though back in his pod, Xavier is still on an ad lib schedule for care and feeding. The dome comes down only to help hold in heat. The isolet bed is still in manual mode and set to a temperature of 27 C (80 F), so Xavier still gets to regulate his own body temperature. With the dome down, in a sleeper and wearing a hat, he is keeping himself at 37.3 C (99 F).
Raquel, Xavier's day nurse today and one we had not met, explained that it is common for the nurses to work to ween preemies from their pods as soon as they can. Even now, with the dome back down, the weening process continues.
Although this past weekend gave us a jump-start about bringing Xavier home sooner than we expected, it now appears it will not be this week. Given we are packing boxes deep in a migration from the Northern Outpost to the Southern Outpost, this is a mercy!
Though back in his pod, he is still a champion eater, taking 45 cc in one sitting with mom and 50 cc from dad today, both within the same 12 hour window. That is 95 cc and 15 cc over his minimum 80. Those were not his only feedings in the same 12 hour window either. This is a very good thing, and his prowess at eating has everyone impressed. Every nurse comments on it. It appears his "ad lib" rhythm for eating is becoming every four hours.
Always, we thank you for your prayers.
Manuals? I Didn't Read No Stinkin' Manuals!
Hello to everyone.
We had a nurse, Susan, today whom we have never met. She has worked the NICU for 28 years and we found her not only pleasant, but informative.
She explained in greater detail the "ad lib" feeding schedule Xavier is currently on. It's more than just a feeding schedule, it's a developmental evaluation as well as another leg in Xavier's journey to come home.
As briefly explained yesterday, Xavier may eat whenever he likes and how much he likes, but needs to be eating (via bottle or breast) a minimum of 80 cc every twelve hours. The 80 cc is the minimum to maintain his hydration. His NG tube is only used to feed him his iron and vitamin supplements and his Acticgall, but even these he will have to take through his bottle eventually.
The ad lib also refers to his cares. He is no longer on a every four hour regimen for exams, diaper changes, and (of course) feedings and handlings. This allows Xavier to work out his own rhythms for feeding and waking and sleeping. The doctors will watch this and the information they learn will help tell them much about Xavier's maturity and development and how near to leaving the NICU he is.
One of the things Susan said several times yesterday concerning Xavier was "he certainly didn't read any books on being a preemie." In the contexts she made this statement, it always referred to how mature and developed he is, even though he is still tiny; he's not behaving like a preemie. That is music to our ears! A crescendo of praise and thanksgiving we relay to Father for His goodness! Susan's statement joins Dr. Rick's statement of "your baby continues to prove me wrong" in declaring the glory of God!
Another nurse who has frequently cared for Xavier, Allison--a 22 year NICU veteran, stopped by to visit last night. She has been off several days and commented with amazement at how well Xavier is doing with his bottle. "I've been away four days," she said, "and look how well you are doing!" Thank You, Jesus!
How is Xavier doing on his ad lib schedule? He consumed about 107 cc in his first twelve hours (two feedings he took 30 cc and one he took 40 cc), all of it from the bottle. His previous "regimented" amount was 112 cc in twelve hours. He did loose 10 grams over the last day (bringing him to 1075 grams), but this amount is not, necessarily, due to lower amounts of food. As Susan put it, "Ten grams is about what a full diaper weighs." His weight is one of the things the doctors will watch closely. If his weight loss trends over a few days, he will be put back on his every four hour schedule. I don't think that is likely, however, nor do the nurses.
We learned yesterday that Xavier not only has PT, he must pass a PT test. Rebecca arrived in time to witness most of the exercises the therapist was testing Xavier with. He did well on everything except some items:
- He does not offer resistance with his arms when picked up from underneath them. He should press his arms toward his body when lifted, but instead lets them go up over his head.
- He is strong at being able to hold his head above the mattress and lay it down slowly, but he does not have control and strength to keep his head from flopping forward.
- He can catch and stabilize himself when tipped over backward (Rebecca walked in on this test and thought to herself "Hey! What are you doing to my son?"), but has not learned how to stabilize himself when tipped to his side.
- He has little neck and shoulder strength and is not able to lift himself up (by pushing against a mattress or a chest, for example).
- He is not using his thumbs when he holds or grasps things, keeping them folded in against his palms. There is a little preemie-sized glove they have to help with this, but he is not wearing one at this time. Wow, what amazing tools they have!
So much development and advancement! Great is our God. Thank you all for standing with us in prayer for Xavier.