Wednesday, October 13, 2004, 11 am MST

At 3:13 a.m. MST, Julian Xane was born to Stacy and David Phillips at the Estes Park Medical Center. He was 6 lb. 4 oz. 19" long. Those of you who know our story know this is no small thing.

Shortly after he was born, it was determined that he was having significant trouble breathing. After subsequent testing and x-ray, it was shown that his lungs were full of fluid at birth.

Around 6 a.m. a transport team arrived from the Children's Hospital in Denver to prep him for transfer. At 8 a.m., Julian left the Estes Park Medical Center for Denver.

At present, the doctor's aren't sure what's causing this condition, although they were able to stablize him. He has good color and a tenacious will to live. He just can't breathe on his own yet.

Please pray with us that Julian will be home with us sometime soon. If we haven't called you personally to tell you what's going on, please don't be offended. We'll post an update on this page sometime soon. In the meantime, please feel free to forward the link to this page to as many people as you wish. Thanks in advance for your thoughts and prayers.

Right now, Stacy is still up in Estes Park. I'm at home, and after I get some rest, I'm going to Denver to see my son.

I'll update soon. In the mean time, feel free to call me, but know that we're both exhausted, and may not be able to talk. (translate: we're screening our calls - nothing personal)

David

Thursday, October 14, 2004, 3 pm MST

Stacy was discharged yesterday afternoon after finding out more information about Julian’s condition from DCH. (Stacy is doing fine, by the way – blood pressure is great, she’s just tired and tender). I went back up to Estes Park immediately, picked her up, and together we came here to Denver. On our arrival, Dr. Hall informed us that Julian appeared to have Potter’s syndrome, or a variation thereof - more below. After spending several hours with Julian, we checked into the local Ramada and crashed. Tonight we have a designated sleeping room right here at the hospital. If all goes well, we’ll be there for the next few days.

While we’re here, please do not call or visit the hospital unless we have specifically instructed you to do so. Leave a message on my cell phone, and we’ll call you when we can. Other than that, feel free to check this page for updates on Julian’s condition.

Potter’s Syndrome in its most extreme form is almost always fatal to the child. In our case, Julian’s external symptoms are minimal, the most pronounced being some apparent deformation in his right foot. His internal symptoms are more serious.

While he was still “inside,” the valve regulating the release of urine from the bladder didn’t form properly, blocking the release of urine from his body, ultimately resulting in a reduction in amniotic fluid development. This has had several effects.

First, sufficient amniotic fluid is required for the proper formation of the lungs. Less fluid, less lung development. As such, when his umbilical cord was cut, his lungs were unable to work fully (that and the fact that they appeared to be partially full of fluid). When he was born, it appeared that he had to work super hard just to grunt. He was never able to fully able to breath on his own, although he was trying as hard as he could.

This condition led to the development of leaks in his lungs, which led to the introduction of air into the chest cavity and the sack surrounding the heart and, subsequently, the partial collapse of both lungs.

Next, the blockage of the bladder led to improper kidney formation. When he was born, one kidney was underdeveloped, and one was enlarged. The doctors speculate that the smaller kidney will not work, and that while the larger one may work, they really can’t say how well or for how long. More than likely, Julian will need a kidney transplant early in life. At present, the doctors aren’t able to properly check his kidney function, but should be able to get a better reading in a few days.

Today the urology team performed a surgical procedure (I think it’s called a vasecostomy) to insert a tube in his bladder that exits his lower abdomen just above the pubic bone. That’s how he’ll urinate, at least for the first few years. After that, other options can be considered, including reconstructive surgery for the urinary track. Not to worry – his penis is still in tact and looks normal, although due to the lack of urination in the womb, the foreskin has sealed itself shut. That should be taken care of when he’s circumcised, but we’re not worrying about that for now.

Later on, we can find out what’s actually wrong with his feet, and make decisions on a course of action. For the moment, more pressing matters are on the table.

At the moment, Julian is under a heat lamp, on respiration, and has probes, tubes and drips in every location imaginable. He’s pretty heavily sedated (pain killer and anesthetic) and isn’t moving at all, although he is now trying to do some breathing on his own (not necessarily a good thing when you're on a respirator, but reassuring to see that the instinct is still there). So far, Stacy was only able to hold him for a couple of minutes right after delivery, before they determined he was having trouble breathing. I haven’t been able to hold him at all. I have never wanted to hear a baby cry this much in my life.

We’re pretty much living here at the hospital for the moment, at least until Julian is “out of the woods.” We’re praying that he does continue to remain stable and improve significantly in the near future. The doctors here are some of the best in the nation, so we’re confident that he’s getting the care he needs. However, they’ve also made it clear to us that Julian is critically ill. For the time being, we’re taking things hour by hour, and treasuring every minute we have to spend with him. I told my dad yesterday on the phone that I think I’m beginning to understand the love of the Father for his children.

We're thankful that Julian is alive right now and appears to have a very strong will to live. We're thankful that of all things, his heart is healthy. We're thankful that he has good color, and that by all external indicators, he's a beautiful baby. We're thankful that he's here at Children's Hospital: if care is needed, it's available here. We're thankful for the reassurance of each other's company - I can't imagine going through any of this if I didn't have Stacy here by my side. And we're thankful to have so many of you praying for us and taking care of us in other ways as well.

Thanks to all of you for your prayer and support in this time. Love and blessings to you all. Check back soon for more updates.

David

Friday, October 15, 2004, 3 pm MST

Greetings from Stacy, this is the first update to come from me instead of Dave. Julian did very well through the night, his nurse told me that for the first 36 hours that he was here, at least 6 holes had developed in his lungs. For the 12 hours last night, not one new hole had developed, and it appeared that the previous holes were stabilized, meaning not necessarily that they don’t exist anymore, but they have been contained through 4 tubes that are placed outside the lungs in the chest cavity which are collecting the air that is accumulating and taking it out so as not to cause danger of another collapsed lung or heart issues from air accumulation around the heart. The tubes themselves are less active, and his blood is remaining well oxygenated, so it appears that at least those initial holes aren’t a significant problem anymore.

The doctors are now most concerned about his kidney function, or lack thereof. They still believe that one kidney is definitely non-functional, and the other kidney may have a chance, but from current indicators it appears that that one kidney may only be operating at 1/8 of it’s capacity, and at least ¼ capacity is needed in order to sustain him without dialysis. They are keeping a close eye on his blood creatinine and potassium levels to determine if and when dialysis may be needed. We are all still holding out hope that his remaining kidney will recover and that God would indeed perform a miracle so that he will not need to be dialyzed. If this does not occur, however, he will need dialysis and will be put on a list for a kidney transplant, which we have been told is not viable until he is at least 1 year old. Therefore dialysis would be the course of action for the first year of his life.

Now that I’ve given all the technical information, I’ll tell you how Dave and I are doing. We are so glad that we are able to spend as much time here at the hospital as we have been, Starbucks has been wonderful and basically told Dave he is off for the month of October. It is part time, so there are no “benefits” to cover his not working, but we will deal with that as we need to. We have had a few visitors, but have generally asked that no one come to the hospital to see us unless we have specifically asked…not because we don’t want the support, but because every moment spent with visitors is a moment that our attention is taken away from Julian. Since we don’t know how long we will have to cherish this little guy, as he is so critical at the moment, we would rather spend time with all of you later when he is “out of the woods” medically speaking. Thank you for honoring our request, and thank you for not taking it personally. The best way you can support us is to continue to lift us all up in prayer. “Don’t call us, we’ll call you,” and that is why we are taking so much time to keep this website updated daily. This is our main communication mode with all of you. Thanks.

Dave and I emotionally are taking this one minute at a time. We love you all. Thanks.

Stacy

Saturday, October 16, 2004, 11 pm MST

Stacy and I were up late last night – not a lot of sleep. We spent the second of our 2 night max. in one of the sleeping rooms here at the hospital in order to be close to Julian. This morning, we came down right away and checked in with the doctors.

Julian’s lungs continue to remain stable. No new holes (pneumas), and sustained blood oxygenation at normal levels, in spite of the fact that Julian is trying to breathe in competition with the respirator. We’re hoping and praying that this condition continues to improve. If so, he should be weaned off the oscillating respirator sometime soon, and put on a regular one. Eventually, he should be able to breathe on his own, unassisted, but we’re not sure when that might be.

Julian is also quite swollen from the accumulation of the various fluids in his little body. His head in particular looks quite puffy, and because they can’t move the ventilator from his left side to his right (his lungs aren’t that stable yet), he’s been on the left side of his head pretty much since Wednesday. His head looks a little funny at present as a result. The rest of him is puffing up too. We’re told that it’s not causing him any discomfort, and it makes him look sort of cute.

There are other things the medical staff are watching constantly as well: vitals, blood gas content (02 vs. CO2, etc.), urine content (potasium, creatinine, etc.) and so on. It seems to be a real balancing act, keeping him stable to buy him time in order for his body to develop and heal properly.

The most serious condition right now concerns his kidneys. One of his kidneys still looks to be ineffective. However, the other one is still being monitored, primarily by observation of Julian’s output of urine. He needs to be outputting a minimum of 2 cc per kg of body weight per hour. This morning it didn’t look like Julian was outputting anything. However, as the day progressed his output was increasing – up to 0.7 by mid-day, and then up to 1.25 by the end of the shift. He was given a diuretic in early afternoon, to kick start the kidney function, which seams to have worked. We’re even more encouraged by the fact that the increase appears to have started before the diuretic was administered.

For the long term, it looks like Julian will need a kidney transplant early in life. In order to accomplish this, he’ll need to grow substantially in order to be able to host a new kidney (the likelihood of him receiving a kidney that will fit increase as he grows: the earliest he might receive one would probably be somewhere between one and three years of age). Our charge is to nurture him so that he can grow enough to receive a transplant. Nothing has been decided yet, but this would probably involve blood dialysis (probably peritoneal – sp?) and possibly a G-tube for feeding, but only if his urine doesn't exceed the 2cc/kg/day mark. All of this brings its own set of risks, as all of these ports/catheters/openings (?!) would be located somewhere in the lower abdomen, not far from the opening left by the vasecostemy, the opening from which he now urinates. The risk of infection is high in this case, so extra care will need to be exercised.

Obviously, we’d love for Julian’s kidney(s) to recover to a point where he doesn’t need dialysis at all. This isn’t completely out of the question, but the possibility is remote. We need a miracle.

Please pray for kidneys! Julian needs to output a bare minimum of 2 cc per hour per kg of body weight to qualify for dialysis without a feeding tube. Also pray for sustained lung development, and wisdom for Stacy and I, along with the team of medical professionals, who will be charged with making life and death decisions on Julian’s behalf. Also, pray for our health: it won’t help Julian if we become so worn down we can’t spend time with him. Our nurses can tell by watching his vitals that he knows when we’re with him, and he responds well to our touch and the sound of our voices. We’re on such an emotional roller coaster that things like eating and sleeping hardly even enter our minds. It really is minute to minute and hour to hour. I wouldn't wish this on an enemy.

It is nothing short of miraculous already that this little ball of life has fought this hard for this long, and we’re thankful for each minute we have to spend with him. We’re thankful that today he had his first stool, and we got to change our first diaper. It really is like tar! We're thankful to have been accepted for a room at the Ronald MacDonald House, right across the street, where we can stay as long as we need for $15 per night - sweet! We’re thankful that we can spend as much time with him as we want here at DCH: it’s not like this at all children’s hospitals. And we’re thankful that, slowly, we’re getting to know our son. He’s beautiful.

David