Skyler's development

When we meet people now, they have no idea that Skyler ever had such a rough, crazy, miraculous start to life. If it comes up that Skyler was born at 23 weeks, I'm not sure how to convey the experience to them. I usually say, "Yes he is such a miracle." And I mean it too. But I don't know how to explain it to them in such a casual, "nice to meet you" setting. It would take too long and there's so much that has happened. So usually I just say, "Yes, he really is a miracle." And they agree. But the other day someone kept saying, "No, you are so lucky, that doesn't happen," etc, as if they thought I didn't realize. It got me thinking that I might not do the best job of talking about it in those situations. Of course I realize that he has beaten all the odds. How do I quickly verbalize what an amazing, life-changing experience this has been for us to someone I just met?

I'm crazy about this boy :)

Anyway, Skyler is doing great! He looks like any other four month old. He's right on track with his gestation. He actually turned eight months old a week ago. Happy Birthday to him!

 I feel like he's been three/ four months old forever since that's what where he is developmentally , and that's what I tell people who ask in the store. I'm not sure if they want to know more, so I just leave it at that. I have to remind myself that he really is eight months old.

We went to the eye doctor a few weeks back and he said that Skyler's ROP, which used to be in stage three, has now regressed to stage one. Great news! He says he may have some peripheral vision problems. We have to wait and see what happens. 

An Early Intervention's occupational therapists came to our house to see how Skyler was doing. They were shocked to hear that he was born at 23 weeks. She is giving us exercises and activities to help him progress. It's a great resource to have at our disposal.

Skyler's lungs are doing great. He got a cold and went to the doctor and was still saturating in the high 90s. His lungs are getting so strong!

He always gets a big smile on his face when I talk to him and touch his
cheek at the same time. Sweet boy.

 He also doesn't have any problems with his hearing. He will take another test in a few months to make sure, but I don't see that ever being a problem.

Right now, Skyler is teething. It's difficult to handle teething when you can't keep a teething ring in your mouth. He can stick it in his mouth but he isn't coordinated enough yet to leave it there and gnaw on it. What do you use for teething? Orajel? Tylenol? Just curious.


Skyler's favorite thing right now is to clap his hands together. Even though it's more like clapping his fists together with a few fingers sticking up every now and then. I love to hear him laugh. I love that he smiles with his whole body and not just his face. If you play paddy cake with him, he'll love you for it. Grandma and rrandpa were the first ones to figure that one out.
 (I know he misses his other grandparents too :)

Isn't it fun that I can sit here and write about things like this? Like a baby going through the normal motions of life: smiling, laughing, teething, living and playing at his house... living and playing at his own house and not the hospital. :) It's fun for us, that's for sure.

;

Oh Happiness

 

Catching our Breath

While I was on bed rest in the hospital, I don't know how many times I heard doctors/specialists talk about Skyler's future quality of life. They said no one would judge me if I decided to be "induced" right then, or in other words, abort my baby. It was my choice, they said.

It was difficult to talk about Skyler's future quality of life. We didn't want to be selfish if our son was basically a vegetable and keep him alive just because we wanted him to be alive. So I always said, "No, save him. If he's brain dead we can always pull the plug later." I told the four different doctors that were in our delivery room that day the same thing.

Now, it's hard to believe we ever wondered about Skyler's quality of life. He's like a normal three-month- old baby...who just happens to be seven months old :). 

He's been off oxygen for over a month now. He smiles a lot more and he's starting to try and talk to us. It's my favorite thing. His sweet blue eyes look into yours and he just coos, as if he's telling you the most important thing. Oh, I love it!

I know this is one of the many things that is considered normal when you have kids. Yes, they goo goo and ga ga, then they smile at you and start to laugh. This is what babies do, and there's tons of babies out there. But I love that when I slow down for a second and really think about it, there's nothing normal or average about it. 

When Skyler had heart surgery he was only about 1lb. 13 oz.; He couldn't make any noise because he was on a ventilator. And chances were high that his vocal cords would get damaged during the surgery because he was so small. He tries to talk to us now and his voice is clear, not raspy or damaged. he can focus on our faces because his brain and eyes are functioning properly. He can smile because he's happy. Oh, I love it.

We actually started taking Skyler places right before we left Utah. He goes with us everywhere now. We don't let young children touch him, we sanitize when we get home, and we keep him away from smoke, but other than that we aren't too worried. He's been off oxygen for a month now and his lungs seem strong, so I think that makes a big difference. Plus, it's the summer and it's not RSV season or anything.   

Skyler is sleeping for longer stretches through the night. He usually sleeps at least four hours in a row but one time he slept nine and a half hours! That was amazing.  

It's nice because Chris and I have some free time since neither of us are working right now. We have been here for a month and Chris doesn't start school until Aug. 14. It's given us time to get settled, spend time with all three of us together, and catch our breath. Yay for that! There was a time when I wondered if things would ever calm down, and they definitely have. 

  

Skyler's checkups 

This month Skyler has an eye exam to make sure his ROP is gone, or continuing to regress. He will also have an appointment to check his heart to see if everything is still looking good from his heart surgery.

They are also going to check on the fistula-- the abnormal connection in his heart, and the other small hole they discovered during his heart surgery. They rarely see fistulas I guess. The head neonatologist of the U of U NICU said he had only seen it in one other baby in his career. It could be one of those things that doesn't affect him his entire life. And if he wasn't premature, we may never have known about it. Only time will tell.

He also has an appointment with Early Intervention this month. It's a program for premature kids like Skyler. They will tell us how he is doing developmentally and give us things we can do to help him progress. 

 It would be nice if we don't get news from any of these appointments that rock the boat, especially when we're sailing on such smooth waters right now. But there's no use worrying about that. Skyler has always pulled through anything that's thrown at him. 

Leaving the Hospital, Adventures at Home

I took this picture today. 

      For about the first five months of Skyler's life, he was always hooked up to some kind of machine. Unless he was taking a bath, he had at least five probes hooked to his body at all times. After about a month, we could hold him in the hospital chair right next to his bed, and later were able to set him in his swing or his moving chair. We had a good one-foot radius around his bed, but we always had to be careful of the cords pulling on his skin. It was crazy to me that Skyler had never been outside or even past the NICU doors, except for his hernia surgery at Primary Childrens.

     That's why when the time finally came to take him home, I almost felt like we were stealing something. Whenever we took the probes off before, his monitor would beep, and of course his oxygen would still be hooked into the wall. 
     But now, he had a portable oxygen tank and all the probes and cords were off, and nothing was beeping at us, and no one was standing in our way. It really was the strangest, most wonderful feeling. 

      We had had a few false alarms before, so we decided we wouldn't believe he was actually going home until we signed the discharge paper work. We kept wondering if someone was going to jump out and stop us on our way out, but no one did! 

     I always pictured that as soon as they said we could go, I would practically run out with him before they changed their minds. The nurse had to carry his car seat out so that changed things. But I also felt like walking slow. Trying to take in the surreal moment

Yes, he has Chris' blue eyes :)

     As we walked out the NICU doors, out of the elevator, down the hospital hall and out the front door I couldn't help but think of the first time we ever came into the hospital. 
     I was 22 weeks pregnant, had just been sent home from the other hospital because Skyler wasn't viable yet, and was still leaking amniotic fluid. I told Chris and his sister that we were going to demand that they let me stay there, because a friend of a friend had told me that they had let her stay and it had saved her baby. At that time, I hardly ever sat up because I would leak more amniotic fluid, so for me to take the wheel chair ride up to the U of U's emergency ob was a big deal.
     I didn't get admitted that day but I did a few days later, and being there saved his life. Well, the Lord saved his life--but I know he did it in many ways through their hands.
     I also thought of the first time I was released from the hospital two days after Skyler was born. There had been so much commotion about having Skyler and trying to save him that I had never even thought of the fact that I wouldn't be able to stay in the hospital. 
     When they told me I would be released--it hit me hard. I walked out the rotating doors at the hospital and felt numb. I had left a huge piece of me at the hospital. I had left him. I had to leave him. We went to Chili's right after we left and I sat in the bathroom stall and cried and cried. 
     How could things go on as normal when my precious one pound baby was hooked up to all those machines and fighting for his little life?
     And then-- there we were-- walking out of those rotating doors almost five months later, with our eight-pound-something baby. I sat in the back with Skyler as we drove home. 

     It's been wonderful having him with us all the time. Our little family of three is all together now. What a crazy, amazing, miraculous ride.

     But I am learning that the wonderful, and tumultuous ride of parenthood might not slow down long enough for you to catch your breath.
     Poor Skyler still had one huge hernia when he came home, and because he's so colicky, the pain from it seemed to get worse and worse. He could hardly lay flat and would cry out in pain. Even in his sleep he would wake himself up because of the pain. So he wasn't sleeping much and we were holding him a lot. 

     I also found out that part of the problem was that I was trying to breast feed him all the time; in the hospital, he was getting a lot of my milk through bottles; and now, he wasn't getting quite enough. The last month he was in the hospital my milk supply had gone down, but I had been blessed to have a great deal of milk in the first few months-- as long as I kept up with the pumping. So luckily, I have a deep freezer full of milk so I can breast feed and use that until we both get used to breast feeding all the time.

    Well he had his hernia surgery scheduled seven days after we came home. I'm so glad we didn't wait to do the surgery--even though he got an infection after the first one, and he couldn't eat for almost a week. He needed it so that he wouldn't be in so much pain.

     The surgery went really well but he was in a good deal of pain once his block wore off. They kept him overnight. I'm glad Chris took off work to be there.

     
We had taken him to a couple uncrowded restaurants, but other than that, we kept him home. 

     But then-- the poor guy-- still got a cold.

     Of course, a full-term baby that gets a cold is taken to his pediatrician and sent home. But for Skyler, it means he needs to be hospitalized. They say its like bronchitis for infants, I guess. And his lungs aren't quite ready to take that on without being closely monitored.

     It's been a blessing that we were sent home from the hospital, the first time, with a monitor (a pulse oximeter), because it means we can check how well he's oxygenating whenever we want.

     When his nose and chest started to sound congested, his cough became more consistent, and he needed to go back on oxygen, we knew we needed to take him in.

Sick and back in the hospital

     It was hard to be at the hospital again, but we felt that he was safer there because his cough started to get worse; and he started making gagging and choking sounds-- scary. 
     He felt awful, but he was still able to breathe and only needed a little boost in oxygen. It was also nice that they were able to run a lab and tell us exactly what viral infection he had.

     Before he got sick, he had been off oxygen for a whole week at home but went back on once he got the cold. He stayed in the hospital for two nights. 

     He's been home from the hospital for two days now and his cough is getting better. He's still stuffy but he's weaning back down on his oxygen and might be ready to come off it again soon.
    
 Whew. Quite the adventure already. 


     There's been a few times where I've turned to Chris and said, "This is so hard." And it really has been. Chris and I have cried together (okay--Chris more just tears up, I cry), we've snapped at each other, we've felt pressure from each other and the opinions of those around us, we've felt at our wits end... It's been hard.
     But we've also felt the joy that comes from a big sweet smile from our little miracle. We've appreciated the time we've had together as a family unit. We've felt the strength of a giant in the heart of someone so small.
     No. We wouldn't trade this time for anything. We are very proud parents.

Starting to come off oxygen; not quite ready to take off the cannula, but getting close

Skyler is home!

More pics and stories to come!

He's amazing! Little Superman!

Right about to leave the hospital

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 :)