Dear Family and Friends,
Tomorrow, January 19th, will mark Everett's original due date. Zac and I cannot believe that this day has arrived. If you had asked us in October if we thought we'd be able to "make it" to January, I'm sure we'd both had said "no" without much hesitation. But we find ourselves coming (hopefully) to the end of this epic journey. And while we pictured this day very differently, we are excited and hopeful, the same as any parents who are awaiting the birth of their baby. We, however, are awaiting his arrival home. We consider the past three months to have been our "preview." In our positive times, we have said that we are lucky to get the opportunity to watch our son grow on the outside...something most parents never get to see. But now that tomorrow marks his planned immergence into the world, we find ourselves ever more impatient to get him home. One of our friends from the NICU wisely said, "In the beginning there is fear because you don't know how it's going to turn out, in the middle you fall into routine and the day in day out brings familiarity, and in the end...the end is the hardest because every ounce of you wants to bring them home. And you have a hard time justifying why they have to stay in the hospital. The tubes are gone, the monitors don't alarm anymore, and they look like any regular baby. But they aren't quite ready just yet...but his day will come...and no doubt, when you get that phone call to pick him up, you will be shocked and surprised and scared...just like any mom, of a preemie or not, who's about to bring a new life out into the world."
Our best guess is that Everett's homecoming will be in the next two weeks to a month. The surgeons have decided not to perform the second surgery because he is doing so well. It's opposite thinking, I know, but because Everett can digest milk and continues to grow with the small amount of functional bowel he currently has, the surgeons would like for him to get a taste of home life, where we hope he will grow bigger, stronger, and healthier. That being said, we are back to the original plan of his second surgery taking place in four to six months. Zac and I are a little disappointed that he is going to be coming home with the ileostomy, but at this point, I think we'd volunteer to deal with far more complicated medical devices if it meant bringing him home.
Everett is taking 13mls of breast milk an hour continuously by feeding tube. On Friday, he swallowed for the first time! The therapist was able to feed him 5mls of breast milk from a bottle. He loved it so much that she had to pull the bottle out of his mouth because he wouldn't give it up. We are hoping that this is the start to something great and that Everett will quickly learn to take all his feedings by mouth. This is mandatory for his release from the hospital and is the new goal that we are working towards.
The eye surgeon examined him this morning and called with an interesting report. Everett's eyes have done something that this doctor has never seen in his 10 years of practice...well, not from a Caucasian baby anyway. Everett's left eye has healed so much that he barely has any active retinopathy! His right eye has a small section of stage 3 disease (stage 3 is not good), but the affected area is so small that laser surgery might actually cause more damage than actual treatment. That said, Everett has made it through the "hot zone," to quote the doctor, and the retinopathy should fizzle out on its own. He will examine him again next Monday but he thinks the possibility of surgery is remote. The doctor said that he's never experienced such a turn around...a true miracle!
With all this good news, many of you are probably wondering why Everett isn't back at SV. In truth, he is medically stable for transfer to a lower level of care. But we have been dealing with insurance issues relating to his hospitalization. We have hit the maximum on our insurance policy. This does not come as a shock to Zac or I...we've been waiting for it to happen. But that leaves Everett without coverage for the time being. We are currently applying for government-funded programs that should cover the majority of his medical bills, but the paper work can take up to eight weeks to process. We are pushing for an expedited application and the program is very willing to do this for us. All this means that Everett will have to stay at CHLA until he is approved for government coverage as there are no hospitals that accept the transfer of a patient who doesn't have insurance. It is all very complicated and frustrating but we are thankful for the social workers at CHLA who have helped us navigate through the process. We are anxious to get him at least back to SV as soon as is possible. But it is really out of our hands.
In preparation for Everett's homecoming, Zac and I prepared his nursery over the weekend. The clothes are washed, the diapers are bought, the crib is waiting for him. All we need is our little Everett to fill the void that we've had in our hearts for the last three months. I want each of you to know that we hold Everett's miraculous success to all of your prayers and positive thoughts. Each time a doctor tells me that they never expected him to do this well or that they never seen the amazing things Everett is doing, I promptly tell them that it is because this child, this small boy, has a village, a whole army of good-hearted and kind people praying for him. If there is one thing I have learned in this experience, it is that medicine can only get you so far and then it is up to someone else for the rest. He is our miracle because you have willed and prayed for him to become a miracle! We thank you for loving him! Now we just need to get him home :-)
With Endless Gratitude...(and a little impatience),
The Bollinger Family
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