Sunday, November 14, 2004, 11 pm MST

We went to see Julian today for a few hours. He's doing great, getting "fat and sassy" as his nurse likes to say. As time progresses, Julian is looking and acting more and more like a real baby! Obviously we're thrilled.

Tomorrow Julian's labs will be drawn again, and we'll get to see where his creatinine level is. We're still hoping that it's going down: at last count it was at 2.5. At 1.9, dialysis is put off indefinitely; below 0.6 is considered within normal range. We're hoping, ultimately, that Julian's creatinine level ends up below 0.6, as this would indicate normal kidney function. Please continue to pray with us to this end.

Stacy and I are still very tired, but we're generally in high spirits due to the fact that Julian is continuing to improve. Thanks to all of you who have been supporting us in various way, most of all in prayer. The medical staff at the hospital is still baffled at Julian's progress, unable to attribute his recovery solely to medical intervention.

Stay tuned.

David

Monday, November 15, 2004, 8 pm MST

Stacy went to see Julian today, while I stayed home and caught up on business on the home front: paying bills, review insurance statements (eek!), and working on finishing the house. We still plan to sell the house on Apple Valley - at this point we're financially committed to it - even though at this point we're not sure where we're going to end up. No decisions have been made and nothing has been ruled out: at this point we're seeking wisdom from God on how best to pursue this new chapter in the life of our little family. Please pray with us for a) a buyer for our home, and b) wisdom on what do to next, and where to do it. Thanks.

This is the first day I haven't gone to see Juian at all since he was born. It's hard. I never fully understood the parental attachment between a mother or father and his/her kids. I get it now. I have a knot in the pit of my stomache knowing that I won't be going to see him until tomorrow. That bond is pretty powerful! We blew up one of the photos we took (picture 63 from November 8) to 12"x18" and hung it on our living room wall. It's pretty cool, but it's nothing like the real thing.

I'm going to let Stacy finish the update, seeing as she actually saw Julian today (sigh).

David

Today I (Stacy) visited Julian solo, as Dave mentioned above. His lab had not been drawn yet, so with much anticipation I waited for them to draw the lab to get his creatinine level…they did not draw it until 10:00 am, and then the lab called because that sample was clotted, so they needed to draw it again. I couldn’t bear to stick around for them to draw it a second time, because it involves lancing Julian’s little foot and collecting the blood in a collection tube…and they needed to do it two more times, for two more tubes. The awesome news it that his creatinine level has dropped to 2.4. The nurse practitioner on Friday mentioned for me not to expect it to go down, but to expect it to go up because they have upped his feeding volume, as well as added powdered formula to it to increase its caloric content. This is relevant because his total protein intake has increased quite a bit from the last time his creatinine level was taken, and if the kidney is having trouble clearing the creatinine from the blood, an increase in total protein intake theoretically would mean an increase in serum creatinine. As this was not the case, it’s possible that a net loss of .1 serum creatinine for Julian from the last measurement last Wednesday actually translates to a higher increase in kidney function than it appears. We’ll see on Thursday, when they take his creatinine level again.

Julian’s thyroid lab came back normal, so they have taken him off of the thyroid medication that he was on Saturday, Sunday and this morning. We are rejoicing that Julian is producing Thyroid and Cortisol, and will not need any supplementation on that front.

He was so incredibly cute today, I had a very hard time leaving him at 6:00 pm when it was time for me to go home. He was wide awake, and I so very much just wanted to stay! But I need my rest too, and so I drove home (1 hour or 1 ½ hours in rush hour) before I got too tired. They tried to wean him one more step off of oxygen, and he held up wonderfully for about an hour, then his oxygen requirement increased and we had to bump him back up.

That’s it! That is the update! Thanks again for praying!

Stacy

Wednesday, November 17, 2004, 6 pm MST

Today Julian weighed in at a whopping 7lb-2oz – up 14 oz from 5 weeks ago when he was born. This is good news, as the doctors are concerned that his creatinine may prevent him from growing properly. We’re not totally sure what precise “growth curve” he’s supposed to be following this early, but we’re reassured by the fact that he is in fact growing!

We also received a note on our arrival that Julian passed his hearing screening. This is also good news, as there was some concern over possible hearing damage due to the vancomiacin (sp?) he was given a couple of weeks ago.

The physical therapist came to see us and performed a battery of developmental tests on Julian, all of which he passed beautifully. She gave us some exercises to do on his little feet, to ensure that they’ll develop properly. She doesn’t think there are any structural problems with his feet, but that some of the tendons need to be encouraged to stretch and/or retract, depending on where they are.

I had mentioned a few days ago (last week?) that Julian was slated to take the “room air challenge” – sounds like reality TV – in order to see if he could breathe on his own without any oxygen. Well, he hasn’t actually taken this challenge yet – officially, anyway. He’s getting good at pulling the nasal canula out of his nose, which eventually sets alarms off when his blood oxygen level drops below 85%... so, we can safely say he is not quite ready to be off oxygen just yet.

However, today, Julian is taking the “feed challenge.” This means he is not getting any of his feeds by tube, but all by bottle. We’re seeing if he responds properly to his hunger cues, and if he has the stamina to take in all the calories he needs by bottle. So far he’s exceeding expectations. He’s pretty much spent the day eating, sleeping, pooping and playing, although not necessarily in that order.

He’s doing great. No word yet on when he may be discharged. We’re still hoping for Thanksgiving.

Thanks for tuning in folks. Check back soon.

David

Friday, November 19, 2004, 10 pm MST

Julian's weight continues to increase - today he's nearing 7-1/2 lb. According to the nurses, he's in the 50th percentile for length (average), and in the 30th percentile (slightly below average) for weight. However, considering he had such a rough start, we're not worried about his weight, especially since he still continues to grow.

Yesterday, Julian's blood labs were drawn, and his creatinine level came in at 2.5 - up 0.1 from last weekend. This is not what we'd hoped for, but we're still optimistic that when everything is taken into account, his kidney function will continue to gain momentum, and we hope that his creatinine level will slowly trend downward. In the end, if Julian's electrolytes remain within acceptable range, and he continues to grow, dialysis may not be necessary. Yet.

Julian's nurse today was so impressed with how he's doing that she started talking discharge, and began to fill out the paperwork. It won't happen tomorrow, but it's possible that he might come home with us early next week. We can't wait!

It's so hard to leave him at the hospital at the end of the day - he's just so darn cute! We miss him terribly when we're not with him. However, we're also nervous about him coming home, possibly with oxygen and for sure with some manner of prescribed follow-up care. Please pray that all goes well for him and us when he does come home.

David

Saturday, November 20, 2004, 10 pm MST

Today Julian took his second room air challenge (see photos above). Two days ago he took his first one, during which time he was off oxygen for a little over an hour before desaturating to the point where he had to be put back on (the nurse let him go down as far as 80%). Today, Julian made it for a little over 30 minutes before setting the alarm off at 88%. Different nurse, different tolerances and alarm settings. Right now Julian is on 25cc (0.025 liters) per minute, which is little more than a whiff, but it gives him what he needs for now.

It's not uncommon for infants to leave the hospital on oxygen, which may be the case with Julian. Today our nurse suggested that Stacy and I watch the videos on infant CPR and home oxygen, in order to prepare for Julian's discharge. We still don't know when Julian will come home - we're still hoping for Thanksgiving (next Thursday) - but the nurses are starting to have us check off his discharge items (videos, car seat checks, etc.). Sounds promising!

Now that Julian is eating and breathing pretty much on his own, the most pressing issue about his health concerns his kidneys. We're still praying that Julian's kidneys continue to gain momentum, which would show up in his blood labs through creatinine and electrolyte levels. Electrolytes need to remain within acceptable levels and creatinine needs to continue to drop. It's our deepest desire that Julian can have a normal childhood without having to on dialysis; obviously if he needs dialysis, we'll see that he gets it, but right now it seems like we're so close... Anyway, we're still praying that Julian's creatinine continues to fall. Please continue to pray with us to that end.

Thanks.

David