It's time, but not really

This time Skyler was really coming home. I mean really. He didn't show any signs of infection, the eye doctor said his ROP-- or the ridge build up in his eyes-- was regressing, he had been off oxygen for a week, he was back up to full feeds after not being able to eat, he was gaining weight, and maintaining his temperature.

We were told that he could come home on Monday. Everything was set. This whole weekend we've been timidly watching to see if anything unexpected would stand in our way, like the last few times.

Could he really be coming home? We watched and waited and nothing happened.

The nurse practitioner talked to us about meeting with our pediatrician next week and scheduling Skyler's eye exam at the clinic.

Our primary nurse gave us a hug goodbye when she left for the week and the other nurses kept saying, "We hear Monday's the big day!" I did a little dance in the hospital's hallway.

We disinfected the house and got everything ready in his room. I pushed his new stroller around the living room for practice. All the signs said--this is happening!

We got to the hospital today and started talking to the nurses about taking him home tonight! All the sudden tomorrow felt so far away and we thought, "Why couldn't we just take him home tonight?" So we stuck him in his car seat to do his car seat test-- where he has to be able to maintain his oxygen level for an hour-- and started talking about leaving tonight.

That's about the time the carrot dangling in front of us, practically touching our mouth, got yanked away. And we were so confused we didn't even realize it was gone until it was completely out of reach.

While Skyler was in his car seat, the nurse practitioner starts talking about how we need to give him his immunization shots before he leaves.

Now? Can't we just do it with the pediatrician? We could be out the door in a couple hours?

 She tells us that it might keep him longer but it would be better to get it done now while he's on the monitors. That all makes sense, but we are supposed to be leaving. No, really leaving this time.

As we are talking, Skyler's oxygen rates begin to drop. We're not sure what's happening since he's been off oxygen and doing great all week.

Is his monitor on wrong?

Next thing we know, the nurse practitioner is telling us that he needs to have oxygen on any time he rides in the car. They have to clear it with the optometrist, and rent us oxygen; that's going to take another couple days...

Wait, what? Why don't we try the test again. I'm sure he's fine.

Poor kid has already been in the car seat for an hour and he hasn't eaten in a while so he's hungry. But now there's three other workers around him putting him back in the car seat and trying to move this and that so he will oxygenate better. His hands and face are cold and I want to get him out. His oxygen stats start going all over the place.

I take him out and he starts crying uncontrollably. You have to realize that Skyler hardly ever cries. Ever. And he's been through some pretty heinous stuff.

He started being more fussy yesterday but we thought he may just be over tired. Yet today he's doing the same thing, but worse. I try to breast feed him because I know he's starving but he won't take it. He keeps crying and I can hear the air making a popping noise through his large hernia.

(He got hernia surgery a couple weeks ago but they only repaired one of them because it was so bad and had pushed one of his testicles into his stomach. The fixed the one and sewed his testicle to his scrotum, but left the other one. It was right after that when he started having blood in the stool, having extremely hot and cool temperatures, looking pale, and acting lethargic. Poor kid couldn't eat for five days. That's obviously another story but there's the short version.)

The nurse keeps coming in to tell me that he's probably sensing that I'm upset, and I know that might be part of it, but her comments--although said with kind intent-- were not helping.

We heated him up a bottle and my mom, who had just come into town, fed it to him. Chris and I went outside to talk. When we came back, Skyler was back on oxygen and he wasn't even in his car seat.

What was going on? He's been completely fine without oxygen this whole week and now he's back on it just hours before bringing him home? We left the hospital confused and completely taken off-guard.

So there is our third and closest attempt to bringing Skyler home.


Now the bright side is that Skyler is doing amazing, and he will have his second hernia surgery in a couple weeks and that will relieve a lot of pain and discomfort he's been feeling. We are so blessed. Our son is alive and he's beaten so many odds, and through all your sweet prayers, he beat this last dangerous infection.

When Chris went into the waiting room by the NICU, he overheard two men talking about scheduling the mortuary and taking care of bills. I know that could have been us. By all accounts Skyler shouldn't be alive. And here he is.

I just wish so badly he was with us. Having the consistency and warmth of his own home. I know it's better that it happened at the hospital than at our own house; But other than the monitors and oxygen readily available, he really is better off in the care of his own family. I mean, he's past full- term now and needs the love and care and consistency of his parents that he just can't get from a different nurse every twelve hours in a busy and beeping NICU room. The NICU is set up as a wonderful medical environment, not as a warm, consistent and comforting nursery. We want so badly to give that to him.

And the time will come. We know it will. It's just hard; even if he got off oxygen tomorrow and passed his car seat test, I wouldn't feel comfortable taking him home because he could do that again and I wouldn't have a monitor to tell me. I would only know if he turned blueish gray.

We can't take him home on oxygen because his eyes aren't fully developed.

It's been four and a half months, which isn't that long in the big scheme of things. But around the time Skyler became a full--term baby, we turned a corner. I feel guilty when I'm not there. I know most newborns would be with their parents all the time, not with a new face every twelve hours. It's been especially hard while Skyler has been in pain and discomfort. It's hard to leave his side.

It feels like its time to leave the hospital. But the Lord knows best, and just when I feel like I can't keep doing this, we keep going.

My mom's in town this week. It will be nice because she'll hang out with Skyler while Chris and I go on a date tomorrow.  Not quite the plans we were expecting for memorial day, but we all know that things don't always turn out the way we expect. It's in the Lord's hands and I know I need to rely on that knowledge more often.

It's day 107 in the NICU, and Skyler has made miraculous strides. Still looking forward to day 1 at home though :)

Skyler got his feeding tube out! He's now on his own schedule and taking all his feedings by mouth. He used to have to eat every three hours. Turns out he'd rather eat more in one setting and sleep for four hours. Not a bad schedule. We'll see if it stays that way once he stops taking bottles at night and starts breastfeeding all the time. Either way is alright with me. I'm just happy he loves to eat. 

He now weighs six pounds seven ounces! He will be four months old on May 16th. His due date is May 11th. 

Isn't that crazy? What a miracle. I have to remind myself of that every time I get antsy for him to come home, which, now, is quite often. My day consists of going to the hospital between 8 and 11am and leaving by 7pm. Chris gets off work in Salt Lake at 5pm. He meets me at the hospital and we leave together at 6:45pm. 


From 6:45 to 7:45am/pm, the nurses have shift change and we're not allowed in the NICU at that time. I'm pretty tired by the time we leave, but around 9 or 10 at night, I'm ready to go back again. I usually don't but the past couple nights I've been having a harder time. Skyler has three large hernias and they make his bowel movements extremely uncomfortable and, at times, painful. I worry about him. 

The other night I was cleaning our room and I picked up Skyler's dirty clothes and put them in the hamper. They smelled just like him. 


The next night Chris and I went to the hospital at midnight.

We didn't get back until 4:30am. Chris was dead tired but he went with me anyway; he didn't want me to have to drive alone. How sweet and thoughtful of him. He takes good care of his little family :)

So that story-- and the fact that Skyler's due date is less than two weeks away-- sparks the obvious question: 

When are we going to get pregnant again so our kids can practically be twins? 

No. just kidding...

When can Skyler come home???

 Well, I don't have the exact answer but I do have a very optimistic guess:

He'll be home in a week and a half. 

Thought I'd throw that out there. Yes, that's extremely optimistic, but I can't help think that he's coming home sooner rather than later.

A few posts back, I made a checklist of what Skyler has to do before he can come home. I left two things out-- interestingly enough, they are the two things still keeping him at the hospital.

The first one has to do with the slow development of his eyes. You probably know that his lungs and eyes weren't ready for oxygen exposure for so long so early. This caused what they call retina of prematurity (ROP). It's a ridge of extra blood vessels that started and stopped growing. If the ridge gets thick enough it can cause the blood vessels to tear away from the retina, resulting in blindness. 


An optometrist checks Skyler's eyes every week to see if the ridge is getting worse, and how far the retinal blood vessels have grown around the wall of his eye. In order for Skyler to go home, the vessels must have grown into, what they call, zone three. Also, the ROP has to be regressing or he'll need to have laser eye surgery. 


The good news is that his ROP is regressing. That's a relief. But his blood vessels have been in zone two for six weeks. He has an eye exam tomorrow and I'm feeling pretty optimistic about it. I guess I've made that pretty clear with my "week and a half" estimate.

The second thing keeping him there is his breathing pattern. We've learned that premature babies, especially ones as early as 23 weeks, have a tendency to stop breathing for a period of time, long enough that their heart rate drops below a 100. 


In order for Skyler to come home, he has to go seven days without having an A and B, as they call them. If the nurses have to remind him to breathe, or give him breaths with a machine, then his countdown starts all over again.


He's on day three.


The good news is that the nurses say this should resolve itself before his eyes are fully developed. 

Me staring at Skyler's monitor.
The beeping doesn't get to me as much anymore, but I still can't help but  look up at it.

Okay, I wanted to list Skyler's Going Home Checklist that I made before, with a few revisions:

• Be in zone three.
• No A's and B's for seven days
• Learn to swallow and breathe at the same time
• Gain weight while breastfeeding/ taking all feedings by mouth
• Maintain his own temperature

Optional things on the checklist:

• Get off the oxygen machine(optional) -- He's still on oxygen but it turns out that he doesn't have to get off it before coming home. They say he will most likely come home on oxygen.  I didn't think he would before. That's why I've never mentioned it.
• Surgery to fix his hernias (optional)--He can go home and come back for the surgery in three months but they're bothering him so much that we want him to have it as soon as possible.

  There you have it. We'll see what tomorrow brings. Hopefully it brings an optometrist with good news :)