Sunday, November 7, 2004, 6 pm MST

Today is a day of little miracles, as Julian continues to look more and more like a normal little baby boy. Oxygen, a feeding tube and monitor probes are all that physically connect him to the ICU: pretty astonishing considering all that he had plugged into him 3 weeks ago. We were looking at some of the early images with some friends a couple nights ago, and one could easily see all the tubes, feeds, drips and probes little Julian was connected to. Stacy wrote in her journal everything he was plugged into and everything he was on when this all began – it’s an incredible list. It’s hard to believe it’s almost all gone.

Tomorrow morning we find out what Julian’s creatinine level is. At last count it was at 2.8; we’re praying it goes down. It is possible that his kidney was stalled by a 24 hour course of vancomiacin (sp?), an antibiotic used to combat staph infections, that was given late last week. One of the possible side effects of vancomiacin is kidney damage, but we’re told that permanent damage is usually only sustained when the level of vancomiacin in the blood remains high for an extended period of time (days to weeks). However, at this point it’s better to risk an outside chance of additional kidney damage than a staph infection. At present, it looks like there’s no infection, and we’re hoping there’s no kidney damage either.

We each got to hold Julian today for about 3 hours each. Today, however, we did what they call ‘tummy time’ (also called kangaroo care), where we actually got bare-chested (one at a time mind you), and Julian is laid on our chest, skin to skin. We could tell that Julian felt secure and content almost immediately. We laid Julian on Stacy during feedings, so Julian will associate feeding with contact with Stacy; this is supposed to help when we start to train Julian how to eat. I got him in between feedings; it might be confusing for him otherwise.

It was so amazing to see Julian happily asleep on Stacy’s chest; this is exactly where he was almost 4 weeks ago in Estes Park, right after he was born. Only then he couldn’t quite breathe and he was only there for about 60 seconds. Now it seems like we’ve come full circle, and we’re finally where we were supposed to be on October 13th. We’re not sure when he’ll be weaned off of breathing support altogether (and we’re not rushing the doctors either), but it will be nothing short of miraculous to hold little Julian without him being attached to anything! We can hardly wait.

David

Monday, November 8, 2004, 9 pm MST

The day-nurse tonight told the night-nurse who was relieving her that Julian was a little “angel-boy” today. Julian was awake when Dave and I arrived around 8:45 am, and was spending some quiet-awake time just looking around and moving his hands and fingers. He has very much become enamored by a stainless steel IV tower that is hanging from a track from the ceiling, so the Dr. said we could take it home to hang mobiles on. (I don’t know if he was serious, we’ll see when Julian is discharged.)

Today was quite possibly Julian’s best and most comfortable day of being alive. I wrote in my journal late in the day that I believe the reason Julian did not sleep hardly at all today (he was awake for most of the day except for a brief period when Dave and I went to lunch…) is because he is just now discovering that the world doesn’t consist of ALL pain, and he is happy to engage with it now that he is more comfortable and people aren’t sticking him and forcing things down his throat or suctioning his lungs hourly. So, yes, it is fair to say that this was indeed Julian’s best day so far of being alive.

His creatinine level dropped by .1 back to 2.7, his next level will be measured on Thursday and Dave and I are praying it is below 2.5, and will continue to steadily work it’s way down to below 2.0. Normal is .3-.6, so ultimately that is what we are praying for.

Doctor Barrie told us today that the Doctors are truly baffled by Julian’s recovery so far. I told him that we have probably around a thousand people praying for him, and he said “well it’s evident that there are ears that are hearing it.” Praise God!

Big news today, as you can see by the picture, is that Julian is now learning how to eat from a bottle! He has been fed thus far by a feeding tube stuck up his nose, and while that tube is still in place while he learns how to eat, he did get a chance to practice 3 times today! The first time he was successful at downing 10 ml of milk before falling asleep, and the second time he finished of 20 ml before succumbing to droopy eyelids. The third time he had gotten so good at sucking vigorously that he collapsed the bottle’s nipple because it was a low-flow nipple, so he only ended up getting 1-2 ml before falling asleep…even though he sucked for a good 10 minutes! (Poor guy!) So, tomorrow, they will give him a medium-flow nipple for the bottle, and he will likely do much better!

There was more talk of transferring him to the Infant Care Center, so that may be as early as tomorrow-we’ll keep you posted! The ICU was getting 6 new admissions tonight, so they are getting busy and crowded again, and I’m sure could use the space. I think we can safely say that Julian is out of the critical zone. Thank you for your prayers and please continue to pray that Julian’s lungs continue to heal and that his kidney keeps “waking up.” Also please pray for protection against the Flu, as a little baby at the Ronald MacDonald House (on our floor) was diagnosed today with Influenza type B (The really contagious type) and that is the last thing we would need Julian’s little lungs to have to deal with! Please pray for extra guardian angels around him keeping any viruses away!

In Him,
Stacy

Tuesday, November 9, 2004, 11 pm MST

Baby Julian is no longer in Intensive Care! This afternoon, Julian made the trip “down the hall” to the Infant Care Center, where he’ll be looked after until he is well enough to be discharged from the hospital. This is indeed a day of rejoicing!

This morning on our way in, we bumped into one of the nurses who had Julian for a shift during his first week in the NICU. She told us (as has been suggested by others) that when Julian arrived, he was the sickest baby in the unit. When the doctors made their rounds a few hours later, their only comments were “we’ve got to get this baby out of here – he’s the healthiest baby in here at this point.” How far we’ve all come in 4 weeks!

When we finally tracked Julian down in his new digs (he was moved while we were out to lunch), we came to realize that he’s far better off than many of the little ones in the ICC, and seems to be improving rapidly. He started bottling his feeds yesterday, at which time he was taking maybe 10-20 cc’s (out of 60 per feeding), and this afternoon for his 6 pm feeding (which he insisted on taking at 5), he downed about 40 cc’s before tiring out. [Don’t worry – he still gets the rest of his feed via feeding tube, but we let him try on his own first].

In the ICC, we get to hold him and interact with him pretty much whenever we want, without nurse intervention. There’s hardly anything attached to him anymore - just high-flow oxygen, a feeding tube and some probes - so now it’s just down to wobbly-head kind of stuff. He’s turning into a real little baby, complete with real little baby gestures and cues (ie. cry + tongue out = ‘feed me’). I realize this sounds funny to all you seasoned parents out there, but considering where Julian started 4 weeks ago, well, we’re continually amazed.

No word yet on when Julian will be discharged. We do know that they’ll be sure he can survive on his own, that his lungs are healthy, etc. Also, they’ll continue to monitor his kidney performance while he’s in the hospital, as well as after, in order to determine if and when dialysis may be necessary. We’re also going to need a foot doctor to take a look at his feet at some point, but that’s still low priority.

Today Stacy and I felt it appropriate to move out of the Ronald MacDonald House, back to our place in Lyons. I’m writing this at my dining room table, and when I’m finished, I can simply crawl into (my own!) bed. When this all started, we didn’t want to be far away from Julian until his condition stabilized. Well, he’s stable. And should anything happen at this point (highly unlikely), he’s in the best possible care already. We'll sleep well in our own bed here at home. And a BIG thank you to those of you who paid for our stay at the RMac House - you have indeed blessed us all!

So, Stacy will continue to commute to Denver daily to spend time with Julian, and while I plan to spend some time in Denver with them, I'll also be spending most of my time here at the house, refocusing on our future. We had a plan for our future once, and God made major modifications to it to accomplish something else. I'm not exactly sure what that is just yet, but we're holding our plans much more loosely now.

David

Wednesday, November 10, 2004, 11 pm MST

Today Julian's creatinine level dropped to 2.5! A nominal change by medical standards, but a significant change for little Julian. According to the kidney doctor, if Julian's creatinine drops below 2.0, dialysis may be put off for the near (and possibly distant) future. We're still hoping that Julian's creatinine level continues to fall to within normal levels (0.3-0.6) as his one good kidney continues to gain momentum. Please pray with us that this is in fact the case in the end.

Stacy spent most of the day with Julian, during which time he was weaned off of high flow oxygen and onto low flow. Yesterday Julian was on 2-2.5 liters per minute at 30% oxygen: by the end of the day today, he was on 0.1 liters per minute at 100%, and oxygenating between 95-100%. This means that Julian's lungs are remaining inflated on their own without mechanical assistance. Very good news!

We're so excited about Julian's progress! He's looking pretty good these days, even with a feeding tube up his nose. He's stil working of taking his feed from a bottle, and seems to have more energy to interact with us every day. He's so sweet.

I was only able to spend a couple hours with him this evening, but I got to spend the entire time holding him. We're so grateful for each minute we have with him. He is truely a gift, and we can't wait to take him home.

Good night.

David

Thursday, November 11, 2004, 6 pm MST

Today Julian is doing wonderfully. He is in a room in the Infant Care Center with several other babies, most of whom are Cardiac patients. From being in the Infant Care Center for two days so far, I believe Julian is probably the closest to being discharged, as many of the babies in there are waiting for heart transplants.

Dave and I are so ready to have our little guy home! Today he took half of his feed through a bottle, so he is coordinating eating and breathing just fine! Yesterday they took him off of the high-flow oxygen and put him on regular oxygen, and currently he is two settings away from breathing regular “room air” on his own! I’m not sure what the numbers actually mean on the regular oxygen machine, but they started him out at .1 liters, and this morning took him to .05 liters. They tried to take him even further to .025 liters (the next step after that is turning the machine off!), but he didn’t respond so well to that big of a change so they bumped him back up. Actually, Mom and Dad didn’t respond so well to that big of a change and because they (we) were nervous that his Oxygen Saturation level was not staying in the mid 90%’s that Dad reached over and turned up the oxygen back to .05, and informed the nurse we had done so.

Tomorrow he will have what’s known as a “Room Air Challenge” where they’ll take the nasal thing out of his nose entirely and let him fly solo. I think Mom and Dad will step out of the room for that particular part. We hate to see him struggling, even if it means he is a step closer to recovery. I wonder if God feels the same way sometimes…

His objectives now are the following:

• To breathe on his own.
• To continue to learn how to eat.

As far as we know, once these two objectives are reached he will be able to come home with us. His Creatinine level will continue to be monitored twice a week, but we can just take him into Boulder for that, and he will probably still have some oral supplements of sodium and calcium for us to add to his feeds. They’ll look at his little feet also before he leaves and give us a course of action (or non-action if no action is needed) regarding his tootsies.

This afternoon in the parking lot we ran into Julian’s senior Neonatologist on, Dr. Hall, who inquired after his progress. Dr. Hall has been absent from Julian’s care for about a week, and Dr. Barrie has been “calling the shots” so to speak. We told Dr. Hall about Julian’s creatinine and oxygen levels, and his overall progress. Dr. Hall remarked “well, you guys are on the five yard line.” He was very pleased. He told us that in 30 years of practice, Julian is only the second or third case he’s witnessed where a baby that sick actually pulled through. “There must have been some kind of divine intervention here!. We told him that yes, in fact Julian did have Divine intervention, and went on to let him know that we believe there are at least 1,000 people praying for him (Dave thinks that number is very conservative).

Julian has been a testimony to God’s graciousness and His role as the Great Physician to the very people that make their life’s work that of saving people’s lives. Julian = youthful, Xane = God’s grace. God has indeed shown His grace in Julian’s youth. He was 4 weeks old yesterday.

Dave and I have moved back to Lyons, and are commuting to the hospital daily. I think we are still operating on adrenaline, but that is slowly dissipating, and we are now very very tired.

Thank you for your continued prayers.

Stacy

Saturday, November 13, 2004, 7 pm MST

Yesterday Julian had his first full-blown tantrum. Dave and I were relieved and laughing through the whole thing after we realized there was nothing physically wrong with him! His cry has gotten stronger, and during his tantrum it was so reassuring to hear his little lungs bellow out! He turned red and everything! He is starting to put together hunger and his bottle, and once we gave him his bottle he calmed down.

Yesterday the Nurse Practitioner noticed that Julian’s thyroid hormone levels were low on both screenings they have done on him, so she spoke with the Endocrine Doctor, who in collaboration with the Kidney Doctor, agreed it would be a good idea to start Julian on an oral thyroid hormone medication, which will be continued until age 3 when they will see if his body is producing it at normal levels or not. They did take one more blood sample yesterday, before his first dose of Thyroid, and it will be analyzed on Monday. If his thyroid level has normalized they will simply discontinue the oral thyroid hormone medication at that time. Thyroid hormone is very important in general, but with babies over 4 weeks old, if it is not present, it can mean poor cognitive development up to and including mental retardation. We thought it a good idea to agree with the Doctors that it was necessary.

Regarding Julian’s right foot, a physical therapist came by yesterday to see him, and after doing a basic exam told us she would send us home with some exercises to do with Julian’s feet. She thought this was all that would be necessary, but they will re-evaluate after awhile to see if he needs any further intervention for his feet (esp. the right one) to develop normally.

When we got to the hospital this morning, his nurse advised us that he had been awake and looking around all night. He was also awake all day today, while we were there. I don’t think it can be a good thing for him to be constantly awake, so please pray that God calm his little mind and allow him some good rest so he can heal.

His Creatinine level will be assessed again on Monday, and we are praying it is continuing to go down. His lungs are still healing, and in fact today when we arrived his nasal canula was half-way out of his nose…ie. instead of both prongs being in his nostrils, it was moved over and one prong was in the wrong nostril, the other prong was out altogether and he was sleeping, so there’s no telling how long it was out. However, it was a good test for him, because his oxygen saturation was holding steady at 88% even though he was only receiving half the oxygen they intended for him to receive! I think in the next week he will be able to be off of oxygen entirely, but if he isn’t that is alright. The hospital does send babies home on oxygen.

We asked the Doctor today about our cats, and whether we should be concerned about an adverse reaction Julian may have to their dander, hair, etc. She said that Julian is at no more risk of being allergic to cats than any other children whose parents aren’t allergic to cats. She said that babies don’t usually mount allergic responses to animals until around age 2 or 3 anyway. We were glad to hear this, as we have had two of our three cats for 13 years, and they have been our family thus far. Of course if we needed to choose between the cats and Julian it would be a no brainer, but we are glad that, for the time being anyway, that choice won’t be necessary to make.

We are still targeting Thanksgiving for having the little guy home. Again, thanks for your prayers and please know that we are very grateful for all of you! The Doctor said we will be unable to take Julian to very public places for about the first year or so, especially during the winter, due to his lung condition. He mentioned malls, church, grocery stores, airplanes, etc. The Doctor doesn’t want Julian exposed to any viruses. For his sake, neither do we.

Enough for now. Good night.

Stacy