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 :)

Cancun-- Oh how we loved you!

 

About a month ago, I was having breakfast with Cassie, Chris' sister and Grandmother-- she likes to be called Grandmother not Grandma :) Grandmother has been wanting to go on a trip for a while so Cassie decided it was high time we planned one. Next thing we know, my father-in-law and Chris have booked us at an all inclusive resort in Cancun for seven days!

I wasn't sure if I could leave Skyler for that long. I didn't want to go and not enjoy myself because I was missing him so much. But then I decided I would never look back months or years later and wish I had never taken that trip to Cancun.

So me, Chris, Cassie, Sarah, my father-in-law Dell, and Grandmother spent seven days swimming and laying out by the beach/pool, biking at the ruins of Coba, wading in cenotes  (underwater caves), eating lots of belgian waffles, steak tacos, mangoes, and ice cream, walking and shopping on 5th ave, playing cards, and in short-- just loving life.

The resort was gorgeous and the weather was nice and hot, and a little windy. Chris and I got our own hotel room because it was cheaper to book it that way; and somehow we ended up with a pool right outside our back porch for no extra charge! We bought a floating lounge chair and all of us hung out in  our room when we didn't feel like going to the main pools or to the beach.

The best part about the resort is that we were practically in the middle of the jungle; although, the free fountain and specialty drinks came in as a close second. Raccoons and bearacoons were everywhere. Well, the animals we called bearacoons anyway; they looked a lot like little bears and raccoons and we still have no idea what their real name is. We should have probably added monkeys in there too.

There were lush trees and plants, and of course palm trees all along the resort's walking trails. Another great thing about the resort  was the bar with swings as chairs. One night we walked along the beach and stopped to order some virgin dacres and pina coladas. They weren't the best we'd ever had but the whole experience was still pretty surreal. The whole time we were like, "I can't believe we're here." Thank you Grandmother!
It didn't cost that much to get hotel internet access for the whole week. We used it to access google voice and call Skyler's nurses every day. It worked out perfectly; Skyler's primary nurses worked almost every morning and night we were gone.

His primary nurse, Susan, held the phone to his ear and let me talk to him a few times.  He was still in the incubator at that time, and even though I couldn't hold him that often, I still talked to him and sat by him every day, so it meant a lot to me that he was still able to hear my voice while we were gone. I wanted him to have that consistency.


I was so happy she offered to hold the phone up to his ear that I cried a little after. I knew the trip wouldn't be worth if I was sad and missing him the whole time we were gone so that was the only time I got teary-eyed. They were mostly tears of joy though :)

Right before the trip, I had started having trouble sleeping because the stress was making me anxious. This much needed getaway really couldn't have come at a more perfect time. It was such a blessing.

When we got back, Chris and I felt relaxed and refreshed and ready to face real life again. And of course, ready to see our sweet boy! They had started giving him milk around his pacifier and by the time we got home, he was ready to start breastfeeding. It all worked out perfectly. Thank you again Grandmother!

Our bike adventure at the ruins in Coba

On top of one of the ruins

Riding in the tram at the resort

Right outside our hotel room

Eating at a local restaurant. They had great tacos,
and for some reason the Fanta was amazing there.

Bearacoons! Right outside the hotel rooms. They ran around in the hotel halls too.

Funny story: One of the workers at the resort tried to kiss

Cassie that night when she slipped away to use the bathroom.

He hugged her and instead of kissing her, he quickly licked her mouth!

 Can you believe that?!

 She thought he was going to give her a peck on the check so she thought she'd let him.

Nope. He just licked her face.

Shopping on 5th ave, or somewhere close to it.

The bird man, as we liked to call him. We're sitting there, tanning on the beach, and look over and see this. Apparently , he had food in his hands. The birds were as forward as some of the resort workers ;)

This was a fun day riding bikes at Coba and then hanging out at the beach in Tulum

The wind felt nicer than it looks in this picture. The pool behind us was salt water. I wonder why they do that?

Eating at the resort's French restaurant 

Sweet Grandmother

On our way there

Swimming at the Cenote

The bar swings. Amazing.

Waiting for our food. Some of the restaurants took a long time to serve their  five course meals.  I guess it's a different cultural experience. In the U.S, you get in and get out. This French restaurant was all about the experience. 

Cenote

They did towel designs like they do on cruises. This was the best one. I think the cleaning lady thought we were on our honeymoon.

Skyler is in an open crib now, and he started breastfeeding!

When we prod the nurses to tell us how well Skyler is doing, they usually say something like, "Yes he is doing great, but he still has a ways to go; he has to learn to suck, swallow and breathe at the same time while breastfeeding." Well, I am happy to say that they don't add as much of a disclaimer anymore. They just say, "Yes he is amazing for a 23 weeker."

After two and a half months, I got to breast feed Skyler. I kept telling him how proud I was of him. He did so well. I thought Kangaroo Care was special, but breastfeeding...well, I just cried and the occupational therapist had to wipe my nose. He'll suck for a while and then start panting. It's hard work for him but he's pretty motivated. I've done it four times now. They subtract out the amount he breast feeds and then he gets the rest down his feeding tube; it's in his nose now. Last time he got 10 milliliters. It sounds like nothing but it's a third of his feeding. I'm so proud of him and so grateful for all your prayers and generosity. I know it could have turned out so differently; it could have been the Lord's will to take Skyler back to him. I'm so grateful that it wasn't Skyler's time to leave this earth. He's taught us so much already.

And now that he's started breastfeeding, I can actually start thinking about him coming home! Wow. Just the other day I tore our room apart trying to get ready for him. Now it's less organized than before. :)


His progress is really picking up speed now. Two days ago, I called in and they told me he was in an open crib. An open crib! Everything is louder to him now; it will take a little while for him to get used to it. By the time he comes home, he's going to be so used to noise that we'll to have to turn on a radio or fan so he can fall asleep.

Because he is in an open crib, he can wear clothes now! And since he has less cords attached to him he can be swaddled on a regular basis. He loves that. This sweet lady, one of my mom's friends', sent me a bunch of darling preemie clothes. I can't wait to wash them and put them on him. Right now he wears the ones from the hospital. They're still a little big for him.

He's also gaining weight like crazy. Today he is four whole pounds-- hard to believe since he started at less than a pound and a half. He's pretty compact now, I love it.

Life's Sweetest Experiences-- Kangaroo Care

Kangaroo Care with Skyler

My first three times doing Kangaroo Care

Feb. 22, 24, 28

When Skyler was five weeks old, I got to hold him against my skin for the first time.  As soon as he settled in on my chest, he fell fast asleep. The nurses have you wear a hospital gown and set him inside. He's only wearing a diaper so they put blankets on top of him. He did so well his first time that the nurse let me hold him for two whole hours. Oh, I loved it; It was such a special and intimate moment between the two of us. The nurses said it's comforting for him to hear my heart beat and be close to my skin. I was able to really comfort him for the first time-- not just stick my hands in the incubator for a few minutes. The time went by so fast; when the nurse told me it had been two hours, I could hardly believe it.

I would have been able to enjoy the moment even more if I hadn't been so concerned with watching his oxygen and heart rate blinking on the monitor. It would beep if he dropped below a certain point or get too high. I knew if he wasn't oxygenating well, then the nurse would have to put him back early. But that didn't happen, and it's one of the sweetest experiences I have ever had.

 After the third or fourth time holding him, I was able to look away from the monitors-- for the most part--and soak in the moment. Again, he fell fast asleep as soon as he hit my chest. It was so fulfilling--so gratifying. I was holding my baby--the baby that doctors, nurses, and everyone worried wouldn't survive, or would have serious complications. But here he was, lying on my chest and doing fine.

The first time I did it, I left the hospital aching for more. I didn't want to be ungrateful, it just felt like getting a small taste of a great dessert when what you really want is the whole thing. But by the third time I felt fulfilled--full. It was the one thing (besides breast milk) that I could do for him that the nurses couldn't.  

The thing that surprised me the most about holding him was how light he felt on my body. At that time, he was about 1 lbs 13 oz.--and when that's spread across your chest, it practically feels like nothing. Try putting a few sticks of butter on you, and you will know what I mean. I couldn't tell how his legs were positioned under the blanket after a minute because I couldn't feel them. Was that the blanket or the cords or his legs? I had played Kangaroo Care out in my mind many times, and I pictured feeling him warm and heavy against my chest-- just like a regular baby but a little lighter.  I've held for a minute or two before, but in a different way. He was wrapped it a lot of blankets then or still in his incubator.You think I would have expected him to be so light by now, but I guess knowing something and experiencing it are two different things. 

A long time in coming

It felt like a long time building up to Kangaroo Care. The day Skyler had heart surgery, one of the nurses told me he could probably do Kangaroo Care a couple days later because he was recovering so well. Three days after that, I came in bright and early, excited to hold him. But when I walked in, the nurse told me I couldn't; she said she thought he needed a couple more days. Two days later, I came in and different nurse said no again; they had weaned him down on his oxygen settings, and he could't have too much activity in one day. Two days after that, I woke up with a sore throat and couldn't go in to the hospital for two more days. Two days after that, I called in and told the nurse I was doing Kangaroo Care today, instead of asking her if could, in hopes that it would increase my chances. I did my best to assume the sale instead of asking for it. Well, it all worked out and I got to hold him that day!

We did have a couple scares doing Kangaroo Care. He got so comfy a few times that he stopped breathing. They had to give him breaths on the machine one time. I was sure grateful to be at the hospital at that moment.

One thing I have learned from this experience is how precious life is. I can't believe I have been so close to someone who's dealt with life and death experiences on a daily basis. This is definitely one of the hardest experiences I have ever gone through, but it has also been one-- if not the-- happiest times of my life. Every-day-life seems so much sweeter now, and trivial things aren't as important anymore. 

"The happiest people I know are not those who find their golden ticket; they are those who, while in pursuit of worthy goals, discover and treasure the beauty and sweetness of the everyday moments. "

"If you consider success to be only the most perfect rose or dazzling orchid, you may miss some of life’s sweetest experiences."

Forget Me Not-- Dieter f. Uchtdorf, General Conference 2011

I love reading this talk because it's a great reminder of who I should be and what I should be doing in my life.

Granny came to visit March 10-16 and took these great pictures of Skyler