Monday, November 22, 2004, 2 pm MST

Yesterday Julian took his first bath. Actually, it was a first for all of us, and of the three of us, I think Julian was the most patient. It's so funny - you can tell he really doesn't understand what's going on, that this is something new, but he's responsive to our reassurances, and whenever he would get very concerned, he'd look at us as if to say "Is this how it's supposed to be?" I guess our responses convinced him that he nothing was happening out of the ordinary, so he was actually very calm and compliant. However, we need to so some spot cleaning today, because the nurse pointed out to us some areas that we, as new parents giving their first bath, missed! Like in the creases and crevices such as underneath (WAY underneath) the arms! The thing is, Julian is so strong that unless he wants to give you access to his way under arm, you aint gettin' there! We will try again after lunch.

The next big news is that Julian took his last TWO feedings entirely by bottle! We did not need to put any down his feeding tube! This is indeed good progress, and they are hinting more and more that it will not be long now until we are home. We watched the Infant CPR video and the Home Oxygen video yesterday, and today we are taking our car seat in for them to test Julian to make sure he doesn't desaturate (his blood oxygen saturation level) with how he is sitting in the seat for a long period of time.

Thirdly, the Physical Therapist came back to see Julian's feet, and said once again that she believes the exercises will be enough to correct Julian's foot positioning irregularities on both feet. She mentioned splinting as a next step but doesn't think it will be necessary. When we get home we will have a home health Physical Therapist and an Occupational Therapist coming to the home to track Julian's progress.

Fourthly and lastly, the Kidney Doctor visited us today, and was very very encouraged by Julian's progress, and his electrolyte balance and creatinine level. He said that it is possible that the creatinine level will drop down to below 2.0 over the next few weeks, and I know that is possible too, as I fully expect the Lord to continue to open up his little kidney. Dr. Ford gave us some follow-up information, which is basically that his office will be tracking Julian's progress with his Primary Care Pediatrician, with blood-lab work etc, and then we will see Dr. Ford again in a couple weeks at his office in the hospital on an out-patient basis to continue to monitor Julian.

Good news all around, with all praise to the Lord, and true Thanksgiving. It does look like Dave and I will be spending Thanksgiving by Julian's bedside in the hospital, but we went to the Burlington Coat Factory Infant section yesterday to get the final touches on the things we will need to be able to care for Julian at home...normal baby stuff like blankets and a baby changing mat, etc!

Please keep in prayer another couple from Estes Park, whose baby has been in the NICU for a week now. Please pray for a full recovery and that we will see them transferred to the Infant Care Center in the next few days. Thank you.

Stacy

Tuesday, November 23, 2004, 8 pm MST

When we left Julian yesterday, he was doing a "car seat challenge," where he had to endure the rigors of sitting in a car seat for an hour without desaturating. See the photo above. Although it appears to be hard work for Julian, his oxygen level stayed in the upper 90's, and he passed with flying colors.

When I arrived at the hospital today, Julian had no feeding tube up his nose. See the other photo above. Pretty cute! He was undergoing a feeding challenge, where he has to take all his feeds by bottle, thereby proving that he doesn't need the feeding tube. Although he can be sent home with a tube in (just like he can be sent home with oxygen), we'd love for him to be able to bottle all his feeds. It really comes down to us not wanting to have to reinsert the feeding tube at home - yes, they do teach that to parents at the hospital. Not fun though - we've seen it done, and as such, we're really rooting for Julian's ability to eat all by himself. When I left him this evening, he was ahead of schedule. Whew!

No more talk today of when exactly Julian will be discharged, but he seems to be doing so well, I can't imagine him having to spend the weekend. We're optimistic, but at the same time, we're a little nervous. It's hard enough coming home with your first child, without special needs, but Julian may require extra care and attention from us, which we'll have to pick up as we go. The up side of all this is that Julian has no clue that he has special needs - he's acting just like a normal baby. By many accounts from the nursing staff, he's a happy baby with a great disposition, which naturally we're excited about. We even get excited when he gets fussy and cries, but the best part is when he hears your voice when you come in the room and looks for you expectantly.

This afternoon while I was feeding Julian, two of the EMT's who transported Julian from Estes Park to Denver 6 weeks ago stopped in to see how he's progressing. They were awestruck: it's easy enough to fall in love with this little guy because he's just so cute, but they remember what condition he was in when they met him the first time, remember the trip down from Estes Park to the Children's Hospital. I don't think they (along with many others) really expected him to make it.

Miracle baby indeed.

David

Thursday, November 25, 2004, 5 pm MST

Happy Thanksgiving everyone! We arrived at Children's Hospital today to find that Julian had come down with a fever earlier in the day. They'd drawn blood and taken a urine sample to see if there was any sign of an infection, and although his white blood cell count was a little high, everything else came back negative. Julian tends to be a warm baby, so it could have been that he was bundled a little too well. At any rate, he didn't come home with us this afternoon.

Earlier this week the nursing staff had mentioned the possibility of Julian coming home with us late this week. Yesterday, they mentioned coming home tomorrow. Now that Julian is a little feverish, they want to hang on to him until at least Saturday, which is fine with us. We want Julian home as soon as we can have him, but we don't want to rush his release. Hopefully we'll have him home before the weekend is out.

With regard to Julian's little outfit in the photo... It was a gift from the staff at the Starbucks in Estes Park, and it just looks so darn cute! Start 'em young.

David

Saturday, November 27, 2004, 10 pm MST

HE’S HOME! HE’S HOME!

On Thursday, Julian appeared to spike a fever, so they took a bunch of blood samples and a urine sample to culture it for possible infection. They normally like to wait 48 hours after doing that before discharging a patient, just in case something comes back positive after being allowed to grow in the pitre dish. However, they made an exception for Julian because it was only one reading above 38.0, and it came down right away with no intervention. We all believe that since he is a warm baby anyway, he may have been bundled a little too carefully and overheated slightly.

The long and the short of it is that his doctors were in agreement that Julian could go home. They told us on Friday mid-morning, and we spent the rest of the day at the hospital preparing for his departure…getting his prescriptions filled, being tutored on the home oxygen tank system, etc. They sent him home with sodium citrate and folic acid oral supplements, as well as amlodipine oral supps, which is his blood pressure medication. We also have to give him an injection 3X per week for the next month, which is called Epogen. It stimulates red blood cell production, because his hematocrit is on the low side of normal and they’d like to see it higher. Since the kidneys play a big part in that, the decreased kidney function looks like it is struggling to stay up in that way, and his kidney doctor is giving him a boost. Interestingly enough, this drug has also been used by athletes, illegally, to increase their oxygen carrying capability in their blood and thereby increase their performance, theoretically. We’re just hoping that it increases Julian’s oxygen carrying capability and thereby allow him to be off oxygen sooner rather than later.

As we were leaving the hospital, we swung by the NICU, where we had spent 4 weeks, to say goodbye. One of his Nurse Practitioner, the one who had a great deal to do with his initial set-up with her phenomenal handi-work or placing tubes, IV’s, and the like, came out to wish us well. She said that she would not have dared to dream when he came in that he would look so fabulous just 6 weeks later, and be leaving in such good shape. We were very encouraged, as we have developed a relationship with this NP and we will be visiting her often when we take Julian back for follow-up visits. I’m glad Julian’s story is such an encouragement to her.

THE NEXT CHAPTER: He has been home now for almost 24 hours exactly, and Dave and I have gotten about 5 hours of sleep, which I believe is relatively normal for new parents. Our situation is a bit different right now because we have to get the 5 hours separately, at different times from eachother because we believe one of us needs to always be watching the little guy. He has a tendency to remove his nasal canula and leave it flapping in the wind, so to speak, depriving himself of the oxygen that he needs. Although it is such a small amount, a scant 1/16th of a Liter per minute, it really helps his blood oxygen saturation. We have a little carry case for the tank, and one tank lasts 3-4 days. The oxygen company delivered 4 more tanks to us today, and when we get down to the last one or two we just call them and they deliver more. We have friend whose baby had to be on oxygen for a year, so we really don’t know how long this little guy will need it. It is so good having him home, and probably the biggest moment for us was when we walked in the house with him, closed the door, and looked at each other. We both were seeking direction from the other one on what to do now. We didn’t even know where to put the car seat for the moment! We have been so much in the “now” of hospital life that we couldn’t even know what to expect when we got home with him!

As you can see by the first picture, one of our three cats believes it is business as usual, and since he shares our bed all the time, he can very well share Julian’s also. Julian did not seem to mind. I believe our cats, Fatty and Skinney, are beginning to comprehend how much their lives are about to change. They have received very little of their usual attention in the last 24 hours. Skinney takes it out by galloping through the house willy-nilly and chewing on plastic or computer cords. Fatty becomes very clingy and apprehensive. Little Kitty, our third cat, was nowhere to be found for some time. She comes out when she wants to.

Picture number two is Dave feeding Julian during the day, which is noteworthy because until this morning Julian had never seen the light of day. He seemed to take it in stride. The third picture was taken just a few minutes ago, after we gave Julian his second bath and changed the stickers on his face which hold his oxygen tube in place. Hopefully these will be stickier than the last ones.

So far so good, I went to Safeway for the first time in 6 weeks today. Is it my imagination, have prices gone up so much in the last 6 weeks or have I just forgotten that a gallon of milk costs over $4.00 and one green bell pepper costs $1.69? The world seems to have gone on without us for the last 6 weeks, and apparently President Bush was re-elected to a second term.

We want to thank each and every one of you again, for playing such a big part in our lives through your encouragement and your prayers. Our faith has grown by leaps and bounds! Who knew that our child could teach us so much about God in 6 short weeks.

We will continue to update this website with Julian’s progress now and again, but it will not be every day or every other day. Please feel free to check back any time to see if there are any new developments. Thanks again.

Stacy