Mystery Solved, Mostly
Greetings to everyone.
Ever wonder what happened to the data from Xavier's first Pulse Ox study, the study where Apria "lost" the data (actually, Apria claimed there was no data even though Xavier spent 18 hours on the device)?
It all started with Rebecca wanting to pin Apria down on a time to come collect their oxygen tanks. We knew it would be today, but that's about it. Finding what she thought was Apria's number on one of our receipts (the receipt for the meter used in our first Pulse Ox test--the one with "no data"), Rebecca called.
The number was not Apria, but a family in Thornton. They have a three year old who was scheduled for a Pulse Ox study in the same timing as Xavier. In speaking with the family, Rebecca learned Xavier's results were applied to their son. We also learned that their son was admitted to the hospital with pneumonia because of the mix up.
The family have been battling insurance and Apria over this, saying the Pulse Ox data was not correct and it should have indicated a problem. Insurance is denying claims because of the data. Apria denies there was a mix up in the meters. The family even have a lawyer on the case to help.
As it turns out, we have the carbon of the work order, the one signed by Rebecca when she drove in to pick it up. (Apria would not deliver the meter to our house because our insurance would not pay for a delivery. Yet, Apria sent us by special courier the second meter and sent a courier to pick up the meter. We thought then the special courier was because they "lost" the data the first time and didn't want to lose it again).
The carbon actually has the family's name on it (names we thought were doctors at the pediatrician's office we haven't met yet). Rebecca gave the work order number to the husband and he went down to Apria armed with this knowledge.
So, Xavier's data was not lost, just applied to the wrong baby. Rebecca and I think the reason Apria claimed no data was available from Xavier's oximeter was because the meter never got rented out, yet was still assigned to Xavier.
We are praying that Father will heal this family's son and restore the family's expenses. We believe this case of calling "the wrong number" was really God moving to make things right.
Awesome is our God. We thank you for your prayers, which touch lives we don't even know about, yet we are connected to by unseen threads.
Growing and Growing
Greetings everyone.
It's been two weeks since Xavier was in a doctor's office. Today, it was his pediatrician. Nothing but good news.
Weighing in at 5 pounds 12.2 ounces (2613.8 grams), he measured in at 19 inches (48.26 cm). In two weeks Xavier has added 11.1 ounces and 1.8 inches.
No blood was drawn today. Dr. Abbey still has not seen the lab results from Children's done two weeks ago. However, Xavier's stools are darkening and getting some spinach green in with the dark mustard. I've heard of colon cleansing, but Xavier is doing a liver cleansing! The doctor said Xavier will be on his Ursidall (aka Actigall, his liver/bile supplement) for another two months.
Speaking of liver functions, Xavier will be on his higher-calorie formula for another three months, then probably transition down from his 26 calorie to 22 calorie mixtures. Given his growth, the 26 calorie is doing him well. He is even getting some chub on his thighs and upper arms to match his growing double chin. I told Rebecca it's both exciting and sad to see him put on some chubbiness.
The exciting part is he is growing and will have some fat this winter. The sad part is he is losing his "miniature person" look, which is part of his fascination.
Great is our God Who has done such wonders for us and through your prayers!
Mom is dead-tired, but Xavier is ready to go. That means for mom to get some sleep in the mornings, Xavier gets to cuddle. He stays calm and quiet when cuddling, and mom gets her ZZZs. Here, Xavier still wears the sticky pads used to hold his cannula in place.
It's Official: Room Air!
Hello to everyone.
Yesterday, Xavier's pediatrician called to discuss Xavier's oxygen. Due to technical difficulties with Rebecca's phone (it was dying after soaking in chicken grease, but that's another story), Dr. Abbey left a message. He thought Xavier should remain on oxygen for another two weeks.
We listened to the message and decided to leave Xavier off his O2 until we spoke with Dr. Abbey. He was so much happier without his cannula, and a lot less fussy.
Rebecca went to bat for Xavier today. If the doctor had a good case, we would return Xavier to his oxygen. Xavier's stats, Dr. Abbey reported, were not as good as we thought. Xavier spent 90% of his time on the meter at an oxygen level of 85% or higher. Dr. Abbey likes to see a 90% at or above 90%. Rebecca made our case, and Dr. Abbey agreed we could take Xavier off his O2.
So, Xavier is officially off his oxygen and breathing "room air." Glory to God! We also learned that oxygen is considered a prescription drug, so the doctor had to write a prescription to have the oxygen equipment picked up.
Also exciting, Xavier is outgrowing his preemie clothing. We find ourselves at a point where we cannot find clothing to fit him. Too small or too big, but we can't find the just right.
Xavier's next checkup is Monday afternoon, so we will get a new weight on him. Also, more blood will be drawn to check his liver workings.
We have entered into an interesting phase with the insurance company that is paying for Xavier's delivery and care. Just for the night of his delivery the bill is over $516 thousand. For some reason we cannot understand (we got the bill after customer service closed for the week), they don't seem to realize Xavier's "nature of injury" was being delivered into the world. We are working to clear this confusion up as fast as possible!
Thank you all for your prayers.
No ROP!
Greetings to everyone.
Xavier had his ROP exam this afternoon. Retinopathy of Prematurity (ROP) sometimes occurs in preemies as a result of abnormal blood vessel formation and scar tissue growing across the retina. The final verdict: No ROP! Hallelujah! The blood vessels in his retinas are now completely formed, and formed correctly. No scar tissue!
Xavier does need a follow-up exam with an optometrist in late February, 2014. The doctor at Childrens who performed the ROP exam asked if Xavier went cross-eyed or had we noticed any eye "sticking." We explained we have noticed crossed eyes sometimes when he sees his bottle coming near, but never a "sticking." That was enough to warrant the follow-up.
Rebecca, who did not get any sleep last night after 10:00 PM (Xavier was well-behaved; it was just "one of those nights"), finally found the sandman about 6:00 this morning. At 8:30, the doorbell rang leading the dalmatian to bark.
Jerked back into consciousness and in a sleepy, near-comatose grog, Rebecca stumbled her way to the door with Xavier in hand. It was the courier from Apria, there to collect the oximeter. I guess it's a good thing we didn't dilly-dally about getting the readings!
We called Xavier's pediatrician late in the afternoon to see if the results have been interpreted. Apria had just gotten to downloading the data from the meter and were an hour away from sending it to the doctor. Sigh. At least they didn't lose the data this time.
Speaking with the doctor, however, was of more interest. The oxygen preemies are on supports their lung development, their brain development and the development of their eyes. The doctor told us yesterday that medical science does not know how to determine when is "the right time" to take a preemie off oxygen.
Medical science knows that when oxygen saturation consistently ranges from low to high in a preemie, there will be problems with development of one or more of the three areas: lungs, brain or eyes, and the baby needs to be on the O2. However, preemies who reach their term date (and have stable oxygen saturation levels), being on oxygen gives them little benefit. Medical science has not found a way to determine if the O2 is continuing to support development, and if so, what development is being supported.
Of course, there is the obvious reason to have babies on oxygen, and that is calorie usage. If a baby burns too many calories breathing, he will have less calories for growth. However, Xavier does not work hard to breathe (as born out by his Room Air test yesterday), and he rarely retracts.
We expect to have the doctor give us the "official" word to take Xavier off his oxygen.
Great is our God, and awesome are His works! Thank you for your prayers, they are vehicles for His glory!
Room Air Test, Part Deux
Hello to everyone.
The new pulse oximeter arrived today, in the afternoon. Rebecca plugged it in to begin charging it up. She had a plan. Xavier had been off his oxygen most of the day (we decided to take him off during the day and keep him on it at night while we (attempted) to sleep). We only needed a four hour window of observation, so we thought 7:00 until 11:00 as it would guarantee at least one feeding in there.
We connected Xavier up at 7:00 and turned on the meter. The meter went through its mesmerizing start-up sequence of flashing lights and numeric countdown and Xavier (who tolerated having the sensor taped to his foot quite well) showed 97% O2 saturation and a heart rate in the low 130s. The monitor's display also told us the sensor was well-attached and we could believe the data.
We noted the time in the log, then loaded Xavier into his stroller for a walk around the neighborhood. The walk lasted an hour and Xavier slept through most of it. His sat level was consistently at 97% (in case you are wondering, the meter has a three hour battery backup. We did were not using a super-long extension cord).
The 97% was so consistent I began to question the meter, even though it showed everything working correctly and a reported a good connection to the sensor. Half way through the walk, Xavier woke to strain into his diaper. His heart rate dropped (as expected) and he desatted nicely (also expected). I decided the meter was working after all.
Returning home, we fed him, burped him, changed his diaper, held him, all the things we normally do. His sat levels were high most of the evening, several times reaching 100%! Praise God! I'm no expert, but that data speaks not only of good lungs, but awesome, well-formed lungs! There is a little concern about having too much O2 during retinal development, but what can you do when Xavier pegs the meter at 100% just breathing room air? All the prayer over his lungs really showed off last night!
Rebecca looked at me and stated, "Unless you have an objection, I'm leaving him off his oxygen."
So, Xavier woke this morning (several times) free of his cannula and free of his oxygen sensor. We are going to have to learn how to hold our son all over again now that we have no worries about tripping over his cannula tube, tripping over his oxygen sensor wire, stumbling over an oxygen tank, dropping an oxygen tank on the baby, and so many other imaginations that concerned us.
Rebecca will return the meter to Apria Wednesday. Hopefully, this time they won't lose the data the machine collected, so we can get the "official" and "doctor-certified" word to take Xavier off his O2.
Always, we thank you for your prayers.
What? No Data!
Hello friends and family!
Xavier had a busy weekend. He met many new people, one driving down from Fort Collins to see him. He also, along with his mom, was introduced to a Denver specialty: White Fence Farms.
Tuesday, two more people will pay a visit from the North country of Fort Collins. These ladies will be arriving about the time mom needs a break, so that will be a blessing to Rebecca.
Sunday, because Xavier slept so much in the morning (not his usual M.O.), he attempted to re-order his feeding schedule to be every :50 minutes, and he was fussy about it. One might say he was in a "wee bit of a snit" when his bottle was not Johnny-on-the-spot. Also, he was gassy and colicky, which is not unusual.
Rebecca left the house to "go shopping" and entrusted me with the Little Professor (as my sister calls him). I was determined to get him back on his 2 1/2 to 3 hour schedule so both Rebecca and I could get some sleep Sunday night. Like a "Kung Fu" flashback, I reminisced about the NICU, wondering how they might have handled his loud, complaining condition. Then it came to me: Use the pacifier, Michael! It was brilliant, and it allowed us to get Xavier back on his schedule! Thank you, NICU nurses.
This weekend, after cleaning up several of Xavier's eruptions, we decided that he sometimes cannot distinguish the gassy pain he gets from hunger, which is why he wants to eat instead of burp (or fill a diaper). This revelation also helped us in managing his comfort.
We called Apria today to learn if Xavier can come off his oxygen. The lady at Apria informed us the oximeter had no data on it. Rebecca countered with, "He was on the meter for eighteen hours. How is there no data?"
A fair question, but one to which we did not get an answer other than "I don't know." Not a satisfying answer. So, Apria is sending by special courier another oximeter. Xavier only needs four hours on the meter at room air, so that is all we are going to do this time.
Needless to say, Xavier is still encumbered with a cannula and his parents with an O2 tank. "I'm his mother," Rebecca told me, "and I think he will be just fine without the oxygen." Nodding in agreement (don't get on mom's bad side where Xavier is concerned) I countered with "I'm his father and I'm not going to pay for a broken oximeter." It's interesting how different our thoughts were upon hearing the news of having to do another Room Air test.
Xavier has another followup ROP exam on Wednesday to check his vision and assess his eye development.
Always, we thank you for your prayers. Awesome is our God, Who always leads us to triumph in Christ Jesus!
Smiles to Light up the Room
Greetings to everyone.
Xavier is back on his oxygen for the moment. Rebecca returned the pulse oximeter to Apria today. They will extract the data and send it, along with our log book, to the pediatrician for analysis. We should learn tomorrow whether Xavier can "go native" and ditch the O2 support and all its baggage (baggage quite literally as well as figuratively!)
I will say the smaller tanks are so much easier to carry around, but even easier when no tanks at all!
One of the amazing things Xavier has shown us recently is his smile. He started practicing these a few weeks ago, but they were infrequent and definitely in their "infancy stage" (no pun intended).
Over the last week, we have seen these on a near daily basis. It is wonderful to watch a smile overcome him: His face relaxes, his eyes brighten, something of a "subtle, happy glow" characterizes the full of his face, and then...
...his mouth smiles. More often than not, the widening of his smile brings his mouth to open with what might be described as a prelude to laughter. It's really quite warming! You almost hear his silent, elated giggle as he happily looks up at you.
Thank you all for your prayers and your support.
Air, As God Intended
Greetings to everyone.
Today was Xavier's physical and developmental baseline. The therapists came over and observed Xavier. They said he is doing well, everything is right on track where it should be and they didn't need to see Xavier again for six months.
They spent most of their time focused on Rebecca instead of Xavier, asking her questions. "What is a typical day like?" "What did you do yesterday?" "How did that go?" etc. The line of questions raised the hair on the back of my neck, and it struck at Rebecca's confidence, though I don't think they meant to. We will see if their continued counsel proves useful or a stumbling stone. They are going to see Rebecca again sooner than six months.
Later in the afternoon, Xavier paid a visit to a respiratory therapist for a pulse oximeter study, the "room air" test. Instead of doing the test ("we don't do those tests here" we were told), they gave us an oximeter (we had just returned the one we came home from the hospital with during this same appointment). So, we came away with a new oximeter and and sheet of instructions and a little "log book" so we could do the test. I guess that certifies Rebecca and me as respiratory therapists; have oximeter, will travel :)
As a side note, we did get a supply of new oxygen bottles, much smaller bottles! The lady at Apria said she didn't understand why they gave us the larger tanks to begin with. So, Xavier can now go mobile with O2 tanks half the size as his old ones. That is a step in the right direction; managing the larger tanks was frustrating on many levels.
When Rebecca brought Xavier home, she wasted little time removing the cannula and the adhesive stickers used to hold it in place. For a few hours, and the the first time in his life for so long, Xavier knew total freedom from tubes and wires! We even brought him outside for a few minutes so he could breathe in the fresh air of his new-found (and hopefully permanent) freedom. He got to breathe air as God intended!
It was so wonderful to carry Xavier around the house with us and not have to lug around another ten pounds of awkwardly shaped equipment, always worrying about tripping over the cannula tubing. He got a tour of the house, but he did not seem that impressed. He did seem to be far more happy with not having a cannula attached to his face; he acted more comfortable. It's not hard to imagine why.
Later, we broke out the oximeter and the O2 probe and attached it to Xavier's foot. This was a more difficult process than last time because he has grown so much and his feet are much bigger than four weeks ago. Not daunted by this, Rebecca found a way to make it work!
And so the logging began. The oximeter records all the data. The log we keep will explain what was happening at what times. This will put the data into its proper context. For example, he desatted to 71 at 8:34. That was when he was crying at being awakened to have the pulse ox sensor attached, and he complained about it for several minutes. The saturation level rose to 95 as soon as he settled down, so we noted that in the log. This was our evening late into the night.
We decided to leave the oximeter attached to Xavier all night (we really want to ditch the O2 as soon as possible; if a few hours on the meter in the evening was good, then all night should be better). We kept our eye on him through the night. His O2 saturation levels remained in a good range, generally the low 90s. The oximeter has an alarm set to go off if his saturation levels rose too high or dropped too low. Also, we learned in the NICU how to observe a "blue" tint to the skin, so we knew what to look for if the meter missed it.
Thursday morning, Rebecca will load up the oximeter, connect Xavier to the (smaller) O2 tank and visit Apria again. Apria will download the data collected by the meter and send it, along with our log book, to Xavier's pediatrician. They will analyze the data and let us know if Xavier can go to "room air" (I guess Rebecca and I are not traveling respiratory therapists after all, just meter mules). We think Xavier will pass and graduate to "room air".
Always, thank you for your prayers. God breathed the breath of life into Adam, so He certainly knows how to get Xavier to breath rightly on "Earth's air."
No Biopsy Needed!
Hello to everyone!
In case you did not hear the roar of our praise to God, which may have sounded like thunder to those outside of Colorado, Xavier's liver biopsy has been cancelled! Glory to God. Hallelujah!
Rebecca and I felt strongly Xavier did not need one, and were it not for the pressure of him reaching three months old (which is the age limit surgical correction of bilirubin atresia shows benefit), we would not have consented to having one done. But Father was on the case and took care of it for us. Thank you, Jesus!
Xavier's direct bilirubin count, which rose to 3.17 last week, dropped to 1.5 according to yesterday's blood tests! That is about a 50% drop from last week, and the lowest by far since we started following this metric in very early June.
We cannot contain our joy! PTL! Xavier will continue to be monitored closely via weekly or bi-weekly blood tests, and a diagnosis of the problem is still on-going. But no needle between the ribs and no one-inch by 1/32 inch of liver tissue removed.
Also from the blood tests, Xavier is cleared of a genetic defect called Alpha 1-antitrypsin Deficiency. The A1AT is a protease inhibitor which protects the elastin in the lungs. Problems in A1AT production lead to respiratory complications such as emphysema, or chronic obstructive pulmonary disease, and cirrhosis. This was one of the issues the doctor discussed with us yesterday.
Awesome is our God! Thank you all for your prayers.
The 511 on Xavier
Greetings and hello to everyone.
Well, Praise God! Xavier was a champion today at the doctor!
He started out this morning being generally quiet about not eating. That's a big PTL!
He was calm and quiet during his ultrasound, so calm, in fact, that the sonographer did not have to rush. What generally takes :30 minutes went :45 because she could take her time. This was a minor miracle because Xavier was shirtless, a state he does not like and generally lets you hear about it.
The imaging was very clear and we got to see his internals in some detail. It's amazing how small his organs are and nearly inconceivable how tiny some of the duct work and piping are!
Before getting in to see the gastroenterologist, Xavier got weighed and measured. He weighed 5 pounds 1.1 ounces (2271 grams), and his length measured 17.3 inches (44 cm).
After this, we met with the gastroenterologist. It was disappointing that they did not have access to Xavier's records yet, so we had to fill her in "from the beginning." (the blog was a useful tool for numbers and dates). After collecting all we thought to tell her, the doctor left to find the resident gastroenterologist.
Dr. Shikha Sundaram, the resident gastroenterologist, after digesting all the notes taken, met with us. She explained there is a (very long) list of things that might be wrong with Xavier's liver. The one topping the list (and the most scary) is something called bilirubin atresia. This is a cascading scaring of the bilirubin tree within the liver.
The bilirubin tree is a tree of ever-branching vessels which infuse the liver. All the branches join into larger trunks leading up to the main trunk that feeds into the gall bladder. Scarring begins in the smallest branches, closing off those branches. This spreads into the larger branches, cascading all the way to the main trunk.
The only remedy for this problem is surgery, where the surgeon hunts down branches that are still open and then sews these ducts directly into the small intestine. This ensures bile can get to the intestine.
Dr. Sundaram is fairly sure Xavier does not have bilirubin atresia. She said she is 50-50 on her certainty. Both Rebecca and I have the strong sense Xavier does not have bilirubin atresia. The problem with bilirubin atresia is that it needs to be corrected within the first three months, which Xavier is just at the edge of. The reason for this is by this time, too many of the duct branches have scarred over for the surgery to do much good.
So, how do we know with better certainty about bilirubin atresia? A liver biopsy. Xavier is (tentatively) scheduled for one this Wednesday. The procedure will take about 5 minutes, but much more time will be required to put him under anesthesia, and do the ultrasound to find where the best place to push the needle to get to the liver. It also means Xavier will be spending the night at the hospital so they can watch his recovery.
The biopsy (the results of which will take three or four business days to get) will do one of three things. It will either completely show there is no bilirubin atresia in Xavier's liver, it can suggest there is no bilirubin atresia (but not conclusively throw it out as a possibility), or it can definitely show bilirubin atresia.
The middle, inconclusive result could suggest what is common with preemies who have TPN feeds (that's the vitamins and nutrients that were fed through Xavier's PICC line his first two weeks outside the womb). It is common for the TPN to encourage tiny crystals to form in the bile ducts, clogging them up. Basically, tiny gall stones. The cure for this condition is time. The liver will eventually clear them out.
These are the top two contenders for Xavier's liver problem, but there are another 298 plus possibilities.
In preparation for the surgery, more blood had to be drawn via a vein in Xavier's arm. It was here Xavier broke down a little, but who can blame him? It was interesting that it took two people to hold him down while the blood was drawn. Both the sonographer and the lab nurse were amazed by how much strength he has, especially for his size.
Great is our God, Who has not brought us this far to abandon us now. We thank you all for your prayers.
A Stork Bite
Hello to everyone.
Saturday night, Rebecca began to feel the ominous "tickle in the back of the throat" sensation. So, I told her I would watch Xavier, and she headed to bed, hopefully to sleep off whatever was trying to attach itself to her.
Xavier and I went to bed about 1:00 AM and the two of us were up again at 5:00. Rebecca took the 8:00 AM feeding to let me sleep, and I officially staggered out of bed about 10:30. I love my wife. She informed me she was going to wake me at 11:00 so I didn't sleep the day away. She knows how I hate wasting days like that, and she knew I wanted to finish pulling and connecting a cat-5 cable I started Saturday during the times Xavier was sleeping.
Rebecca, by the way, did not catch anything, for which we thank God!
As the afternoon rolled around (which, of course, is not long after 10:30) we decided to take a family stroll. We found a path along Clear Creek which had a jumping off point in Wheat Ridge, near I-70 and Wadsworth. As we strolled back to the car, Rebecca told me this was our first day as a family since Xavier was delivered. We did not have to be anywhere like the NICU, or a picnic, or store to get supplies. We had commitments to nothing and to no one. We just spent the day together, doing nothing in particular. It was relaxing, and I did get the cable attached (and the ceiling patched!), which meant no obsessing by me so I could relax.
We finished the afternoon by getting lunch/dinner at Dickey's Barbeque. The reason for the BBQ lunch is this: when we stepped outside the house to load Xavier into the car to go for our stroll, hanging in the air like Tantalus' apple was the sweet smell of slow-smoked meat glazed with tangy sauce! I consumed several calories just breathing it in. I told Rebecca, "Change of plan. We're going to drive around the neighborhood then introduce ourselves to the neighbor cooking this." We settled for Dickey's instead. Though tasty, it was no substitute for what seeded our appetite for BBQ.
Xavier has his gastroenterologist appointment tomorrow morning. No food for him after 6:00 AM. We were told 4:00, but the ultrasound lab called and told us 6:00. We can feed him a little Pedialyte, so that should help.
I have forgotten to mention them, but Xavier has two birth marks. Dr. LeBlanc pointed them out to us the day she met Xavier. Both are on his head. One is very light and above and to the rear of his right ear.
The other is the size of a quarter on the lower portion of his occipital bone. We thought the second was a pressure mark because he spends so much time on his back. Dr. LeBlanc called it a Stork Bite because it's in a place where the stork would have lifted Xavier. When his hair thickens, no one will ever know it's there.
Great is our God Who gives us rest, and today led us along green paths beside a slow-running creek. Thank you all for your prayers.
Another Doctor
Hello and greetings to everyone.
Xavier's labs results for his blood draw on Tuesday came back. The numbers, though not alarming, are concerning enough to have Xavier examined by a gastroenterologist.
The primary indicator being followed is Xavier's direct bilirubin count, which went from 2.5 a week ago to 3.17. Though Dr. Abbey considers it a small increase, still it's an increase where the last several labs have held stead at 2.5. Also, Xavier's stool color has lightened over the last week or so, another indicator his bile producing and/or delivery system is not working properly.
We have an appointment at Children's Hospital Monday morning. We get to bring in a recent diaper, properly soiled of course, for the doctor to examine. Also, it has been recommended that a "fresh" sample should be given. Xavier is good about providing those, but for one tiny complication.
As part of the exam, Xavier will have another ultrasound of his liver. This means he needs to "fast" until after the exam, meaning he cannot eat anything after 4:00 AM Monday morning. Pray for him and for Rebecca! Xavier likes his bottles and he has no problem letting you know he wants one, or complaining about your tardiness in getting one to him. He definitely believes in the "squeaky wheel" theory. With having nothing to eat for so long, Xavier may not have the raw material to provide a "fresh" sample.
His high bilirubin count has been a chronic issue with Xavier. While in the NICU, most believed it would correct itself. It still might. However, Xavier is a fighter! He will overcome this as he has overcome all the hurdles before. Though His God he will do valiantly! The prayers on his behalf will open doors and make a way for Father's provision!
Always, we thank you for your prayers and support. It is a great honor to us that so many join together to "pray it through" for Xavier.
Mr. Xavier Meets Dr. Abbey
Hello to everyone.
Xavier met today with his official pediatrician, Dr. Nick Abbey. Dr. Abbey is a former UCH (University of Colorado Hospital) doctor who worked closely with the NICU. All those we spoke with while Xavier was in the hospital had nothing but glowing testimonies about Dr. Abbey.
We definitely like Dr. LaBlanc who saw Xavier his first two visits. We're not changing doctors, it's just that we have not met with Dr. Abbey before today because, apparently, he takes vacations and was on one these past two weeks. Dr. LeBlanc was filling in for Dr. Abbey.
Unfortunately, I did not get to meet Dr. Abbey today. I stayed home to assist in the replacement of the water tank which ruptured two weeks ago. Rebecca did say she liked him, so another good appraisal for him.
Xavier weighed in at 4 pounds, 14.8 ounces. (for those still wanting grams, that's 1841 grams). Xavier was brought into a different room today than his previous two visits. To weigh him, they took him (briefly) into the room he was in last time to use the scale in there. This way, they get consistent weights.
Dr. Abbey did take a look at a sample stool Xavier was happy to supply. He thinks it is a little lighter than it should be. Arg! I have not mentioned the results from Xavier's blood draw last week. The numbers came back unchanged from the previous three lab results. Xavier's direct bilirubin count is still in the 2.5 range (it should be less than 1). His hematocrit value still lower than it should be.
They took more blood from Xavier today, this time from a vein in his arm rather than a poke in the heel. They needed a little more blood for the labs they want to run.
Xavier has been gassy these last few days. Having read the ingredients in the formula, Rebecca says it's a recipe for anyone to be gassy. Whether that or some other reason, it has him off his feeding game quite a bit. He tries to eat, but the gas (not just in his stomach) greatly distresses him. It's taking longer to get him to take his bottles. He generally takes them, just over longer periods of time: an hour instead of :20 minutes.
One of the nurses at Saturday's Annual NICU Graduate Picnic suggested an over-the-counter drug called simethicone, which the NICU nurses use occasionally for gassy babies. Dr. Abbey suggested a particular pro-biotic which we started Xavier on this afternoon.
Praise be to God, Who always causes us to triumph in Christ Jesus! Thank you all for your prayers.
Graduation Picnic
Greetings to everyone.
Rebecca and I took Xavier to his first UCH NICU Graduate Picnic. This is a picnic sponsored by the hospital and supported by the community. It was held at Generals Park, a park across the street from the hospital. This is a yearly picnic attended by NICU nurses, NICU parents, NICU children, NICU doctors, et al., and has been going on for more than 22 years.
We arrived a little late, not really expecting much. What a surprise. Rebecca turned to me and said "Next year we won't dally." Hundreds of people were there already and we were only thirty minutes late. Hotdogs, macaroni salad, fruit cups, chips, drinks, sno-cones galore in the food lines. All of it was free, paid for by donations.
Dinger from the Colorado Rockies was posing with kids and signing autographs. Miles from the Denver Broncos was doing the same thing about twenty feet away. Eventually, the two got together to pose with the kiddos.
They had bouncy-houses, basketball free-throw contests, hula-hoop contests, bubblegum bubble blowing contests. Oh, the list goes on!
There was a little train running around the park. It was driven by a man named Vern, the train's owner, and he has been bringing and driving the train over 22 years at this event.
I examined the train, but the little barrels were too small for me to fit into, and way too big for Xavier to sit alone. Sadly, we could not take a train ride. Rebecca would not let me take Xavier climbing on the rock wall they brought in. Plus, they did not have a safety harness small enough for Xavier.
We ran in to many of Xavier's NICU nurses. All were excited to see him, many asking "where's Xavier?" Rebecca filled them in and let them see and poke him. Two of the nurses were excited to find us there because they were on vacation when Xavier was discharged, so could not say their goodbyes. One nurse, Allison and the first of Xavier's nurses we ran into, returned to find three of her babies discharged. "Where are all my kids?" she told us were her thoughts.
We ate lunch with a couple whose twin boys were delivered at 24 weeks and each weighed less than Xavier did at his delivery. The twins will be eight in October, and you cannot tell they were preemies and so small.
We met many parents with preemies and all had the same story: their kids have grown well. What encouragement! Even though we feel Xavier is doing well, still it was nice to see and hear so many stories like this.
There were so many sets of twins there; most of the graduates in attendance seemed to be twins. We did meet a couple with quadruplets, and one pair of them were twins! It was amazing to watch the mother feed her four (all were nine months old). Put a bottle in their hand, then lay them on their back at one corner of the blanket (four kids, four corners). This mother had it down to a science. I think with four, that would be necessary and a matter of survival for one's sanity.
What a great celebration. They even had group pictures of all the graduates. Xavier and Rebecca appear in the 0-5 year old group. We are excited to attend next year!
Great is our God, Who surrounds us with clouds of witnesses to encourage us and connect us into families who have been through the land we are now passing through! Thank you for your prayers!
A collage of much of the activities. A climbing wall; a bouncy house; balloon animals, swords and hats; Dinger and Miles; a Hula-Hoop contest, won by last year's champion who is 8 and her performance made the Pink Bunny look like a slacker; an all-terain train.
This is Allison, one of Xavier's main nurses while in the NICU. She was the first we met at the picnic and was excited to find us. She was on vacation when Xavier was discharged, so she missed saying her farewells. Allison has been with the NICU 22 years. She wanted a picture of her, Xavier and Rebecca, which we were happy to supply.
This is Stacey, another of Xavier's main nurses. She is a lively nurse and a lot of fun. Like most of the nurses we met, she has been with the NICU a long time and very knowledgeable.
This is Kathy, Xavier's "older sister" and a wealth of information. We always enjoyed having her care for Xavier. She lives near the Southern Outpost, but even that close, I couldn't entice her to come home with us to continue caring for Xavier.
This is Jody, another long-time NICU veteran with four boys of her own. Xavier did not have Jody many times, and only near the end of his stay. She appears serious in this photo, but her excitement and enthusiasm are completely infectious.
Rebecca and Xavier at lunch. We sat next to a family who had twin boys delivered at 24 weeks, both weighing 1.5 pounds. The boys will be eight this October, and you would never guess they were preemies!
This is the group of NICU graduates from 0 to 5 years old. Rebecca and Xavier are in the center, back.
Visitors!
Hello to everyone.
How much difference a week makes! Xavier had another pediatrician visit on Monday. He weighed in a 4 pounds, 8.6 ounces. He looks so different from last week, notably bigger. His cranial sutures are coming together. The soft spot on the back of his head has nearly closed. The bones on top of his head are growing thicker and making the soft spot there very noticeable where once you felt it, but strained to see it.
He is eating more, but sleeping less after his meals. He likes to lay and look around, or "sit" resting his back against one's tummy and look around.
Speaking of sleeping, we are all doing better at it. We seem to improve every night just a little more. Xavier has twice slept through his (early morning) feeding times and we (meaning Rebecca) have had to wake him. Both Rebecca and I don't have an issue with his sleeping through his 4:00 AM feeding; he is still eating his full amount for the day.
Xavier has a physical therapist coming to meet with him. Since his delivery weight was under 1200 grams, he qualifies for a program that will help him develop physically and speech-wise should he need the help for the next three years. It's "free" to us and the therapist comes to the home.
Xavier has had several visitors this past week. The first made a "play date" with Xavier (through his parents) some weeks back. She wanted to come down and meet Xavier when we brought him home. We spent a few hours with her and Xavier got to meet one of the people who has prayed for him all these months.
Xavier also got to meet the woman who introduced Rebecca and me, Margaret. She and her two daughters (my "nieces" who have always known me as "Uncle Mike") came down Sunday to meet Xavier. They three were all recovering from some respiratory issue and had to wear masks, but that didn't daunt them! Near the end of their visit, Margaret looked at us and with a mimed plea, asked to hold little Xavier. It was a precious moment, at least to us. Margaret and the girls took some impressive photographs, including our newest family photo.
Yesterday, Xavier met two more people to stopped by to pay Rebecca a visit. We may need to get more chairs if this pace keeps up.
Our God reigns! Thank you for your prayers.
A wonderful Family photo. Taken in Xavier's nursery. I think this was taken by Xavier's "cousin" Emmelia, thus the towering and sturdy look of the family.
Xavier's "cousins" fawn over him.
"Aunt Margaret" holds Xavier. She was overcoming a sniffle, so she wore a mask to protect her "nephew."
Dad holds his son; unknown to him, he was ambushed by the paparazzi. Actually, Margaret has a wonderful eye and knows her camera; she took Rebecca and my engagement photos.
This is such a great picture of Rebecca, one almost misses seeing Xavier.
It appears Xavier is pondering something profound. "Should I have regular formula or chocolate formula?"
"What's up with all this attention?" Xavier may be thinking, or else he's working on a burp.