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

Skyler's note to you on his two-month Birthday :)

 Thank you for all your thoughts and prayers! If you are wondering how well I am doing-- just look at these pictures. I laugh a lot in my sleep now. There are angels that watch over and protect me, and comfort me when I'm scared-- just like my dad promised in my baby blessing. I love you all and am excited to give you a hug when I get a little older.
love you,
Skyler

32 weeks gestation

Skyler can breathe on his own now. He only gets oxygen through a high-flow cannula. In the next week or two, Skyler should be ready to start breastfeeding! (very gradually) Here are Skyler's goals before he can come:

                                                learn to swallow and breathe at the same time

 gain weight while breastfeeding

maintain his own temperature

be able to breathe on his own long-term

Most people that see Skyler tell me that his pictures make him look bigger than he actually is. It's true that he is still pretty small, but he's more than doubled his weight! He's now 2 lbs. 14 oz. We are so proud of him, and so grateful for all that you have done for him.

What Nobody Really Talks About

     A few weeks ago I had a breakdown in the hospital. I started crying to the nurse and saying, "Why can't you just turn his head the way he wants it?"

     There were a lot of things leading up to this moment and they all have to do with the interesting dynamics between parents and nurses in the NICU--both good and bad. I did talk to Amy Lindstrom--who had twins in the NICU-- about this, but I don't feel like it's talked about that much. I would love to get some feedback from you NICU moms, nurses, or anyone else. 

     Many of the nurses have been working at the NICU for 10-20 or so years. They care about these babies and have to do things for them that most parents don't have the expertise to do. They are with the babies 24/7 and the parents aren't. But with the exception of primary nurses-- nurses that you choose to be assigned to your baby when they are on shift-- nurses may switch from baby to baby every other shift, which means parents can have new nurses maybe three to five days a week. (or more, depending on primary nurses or the other babies in the room's primary nurses) This can be difficult, because although NICU nurses have had years of experience with premature babies, it may be their first time working with your baby. As a parent, I see my baby every day  and know my baby's personality, and there is something to be said about being your baby's advocate. Sometimes there can be a bit of a power struggle between parents and nurses. For the nurse, it's their work space, their expertise, and their domain; for the parent, it's their child. I could expound more on that but maybe it would be better if I tell you my story and some of the difficulties I faced.

     Also, I wanted to tell you these experiences because I love all your sweet comments and compliments, but I don't want to give you the impression that we handle this perfect all the time, because that's definitely not the case.

 I think the University of Utah Hospital NICU doctors and nurses are the best of the best at what they do. People fly in from all over to be here. It was definitely a tremendous blessing that we ended up at this hospital. But I think, especially because of Skyler's size and age--and the amount of time he has been/will be at the hospital--there are bound to be some conflicts. (Skyler's two month birthday is coming up). It's pretty emotionally draining to write this but maybe it's good to cover both the good and the bad.

     A few weeks ago Skyler was having a really rough time. He had a lot of fluid and congestion in his lungs making it difficult and stressful for him to breathe. His breathing and heart rate was very volatile etc. This made him more agitated about things, and he couldn't stand being on his back very much. One nurse explained it this way: it's like being really congested so that it's hard for you to breathe on your back. So what do you do? You cough, or put pillows under you, or turn over. Well, Skyler can't do any of those things and if he tries to move, the tubes in his mouth will pull on his face. (He was still on the ventilator at this time)

      It was obviously a stressful time for Skyler and for us. I wanted to be able to take care of him so badly but I'm not the nurse and I was afraid to turn his little body on my own. Some of the nurses were extremely gentle about turning his body and doing his cares, but others were not. He was still only 24 1/2 to 27 weeks gestational age-- so tiny!

     One day I noticed something was wrong with Skyler while he was laying with his head straight on his back. He kept making this face and opening his mouth wide but he wasn't yawning. I mentioned it to the nurse a couple times, but she said he was fine and would calm down. I looked in his incubator feeling so helpless. When I looked up at the clock I realized that three hours had gone by. Another nurse came in early to take her place, and I told her what he was doing. She suctioned his mouth and he improved immediately. She said, "Oh, it looks like he was gagging on his own spit." Since he couldn't swallow very well then, and tends to get more saliva in his mouth than other babies, he was literally gagging for hours. It was then that I realized that some nurses may catch some things that others don't. But I knew that was out of my control. How could I help though? Should I try to be there more often to make sure he is doing okay, I wondered?

     The next day I asked a nurse I had never had before if she could make sure to suction his mouth often because he gags himself sometimes. She said she did it every care but I caught her giving another nurse by the room a look and smiling while saying it; It felt to me as if she was saying, "Oh these silly parents, we know what we are doing." Granted, we have to take into account that I am over sensitive because it's a difficult situation anyway. But sometimes I get the feeling that some nurses feel like they have been doing this forever and they know what is best. And well, they do, but the fact is that I see Skyler every day and every baby has their quirks.

     Something important to know is that the nurses turn the babies every which way to make sure that there heads stay round. But both Chris and I noticed that Skyler seemed to be on his back 70 percent of the day. I tried to ask this particular nurse to put him on his belly more but she said she needed to keep his head round. Yes, of course I want him to have a round head but that wasn't my main concern then. She left him on his back even though I saw it was upsetting him. Things like that were really hard to see. I kept thinking how stressful it would be if I couldn't breathe very well, and was forced to stay in that position. 

     I ended up talking to the doctor about him being on his back so much in his condition. His response was, "He really doesn't have to be on his back that much. You're right, he can be on his belly for a lot of the time. They do oxygenate better that way and it doesn't harm them."  This was good news because one of the nurses had told me, that while they're on the ventilator, being on their belly too much can harm their lungs. She wasn't lying to me or anything, that's just what she thought.

     The next day I watched a nurse--who I thought was very sweet-- pinch his chest over and over during his cares. I found out later that this is an okay method to check for dehydration on a much older preemie, but not on someone his size. His nervous system isn't fully developed and even rubbing his skin is painful. You are also supposed to give them as little stimulation as possible to help them sleep and grow, and to avoid bleeding in the brain. But I watched her do thing two or three times, more than I had ever seen other nurses. The two nights he was with her he was the most upset I had ever seen him. He was freaking out: trying to pull his ventilator tube out, flailing his arms and legs around--it was awful.

     The first night it happened, I knew it didn't look right but I wasn't sure. I mean, she was the nurse right? I woke up in the night so upset about it, replaying it in my mind, the way he jumped when she pinched him. When it happened again the next night I was there, I finally asked her to stop, but she had already pinched him at least nine times. (three sets of three) And I knew that was just the time I was there to see it; they do cares every three hours.

     The next night I talked to a new nurse about it. She said she had never seen another nurse pinch a baby in the NICU before. But I still didn't tell a supervisor about it. I mean, she was so sweet. I didn't want to get her in trouble. But later that night I felt guilty that I hadn't said anything and protected Skyler more. What if she was there the next night? What then?

     The next day I decided to tell a supervisor-- known as a charge nurse--when I got in. When I pulled into the parking lot I told myself not to overcompensate for not saying anything before. Sometimes I can overcompensate when I realize something wrong has been happening for too long--like a person who over corrects a car instead of turning slightly.

      When I got into Skyler's room I saw that it was a different nurse. It was a  particular nurse we had had before, and I thought she was rough when she pulled the ventilator to adjust his head-- not like some other nurses who were really gentle with him, especially with the stiff tubing in his mouth.

     While I was there to see Skyler this nurse had me unplug my computer in the room until someone could come check out my equipment to see if it was okay for me to plug it into the wall. We have never had a nurse have a problem with us having a computer in the room, and it felt like she was going out of her way to control the room. Of course, I was already sensitive that day and felt very acutely that I was a guest there.

     During cares she moved Skyler on his back with his head straight, and he kept trying to turn his head, but was pulled back by the ventilator. I asked if she could turn his head just a little because he wanted it that way. He was obviously upset. She simply said, "No, he will calm down." She had already given him the sedative--ativan minutes before, to help him calm down. I left the room and came back about fifteen minutes later and he was still really upset, and was trying to move his head. Then the nurse told me she had just given him Morphine on top of the ativan because he was still upset. I looked into his incubator to see that she had left his head in the exact same spot. Hadn't I just told her that all he wanted to do was turn his head? I knew that was all he needed. I had told her, but instead of doing what I asked she gave him extra drugs to wipe him out. I don't think many nurses are like this, and she is definitely the extreme. She seemed liked it was all about control or doing things her way.

     That's when I started crying-- sobbing really. I asked her, "Why can't you just move his head the way he wants? The doctor even said he doesn't have to be on his back like that right now." She walked out of the room and got one of my primary nurses to come talk to me. Even after that she never moved his head until it was time for his next set of cares.

     That day I went in to the charge nurse and asked for all three nurses never to be his nurse again :this one, the one that pinched him, and the one that I didn't feel as comfortable around. I think I added the last nurse because I was overcompensating for not speaking up about any of them. It turned out that the last nurse was one of the charge nurses or supervisors.  

     One of our primaries, who is also a charge nurse, ended up telling Chris that a nurse said that I was there at the hospital all day and that I was always staring in at Skyler and worrying about him. She also told Chris that she noticed I had a long list of nurses that I didn't want taking care of Skyler; then she said that every nurse may do things differently but that they all love the kids. It was all so hard to hear. I had felt guilty not speaking up and now a part of me felt guilty for speaking up. Plus, did that mean that some nurses did not want me there all day? Did they think I was in the way? 

     She also said that the other nurse said that I reached in his incubator a lot, and that he needed his sleep. It's probably true, I did reach in there a lot that day. I was a little sad because they had told me for the third time I could do Kangaroo Care, and when I got there that nurse said he wasn't ready. (Not that I'm saying it's the nurses' fault, it was just hard because I wanted to hold him) Usually I only reached in there if he was awake and looked uncomfortable in some way.

     Last week another nurse, that was really nice, told Chris the same thing about not reaching in too much. Chris said he had watched Skyler for ten minutes shaking his arms, or legs, and reached in to comfort him. She said Skyler needed to learn to calm himself down, which I understand. But at the same time he is a preemie, and just being out of the womb is stressful; anything that relieves his stress is a good thing. Chris also made the point that we are not here all the time and that he can calm himself down when we are not around.  I know there's a happy balance somewhere. And I know she meant well and probably didn't see that he was shaking; He wasn't crying and the computer monitor said he was fine. It's just hard sometimes because we want to be his parents and feel a part of his life. In other situations, parents make decisions for their kids and don't have to ask permission to touch them or have to worry about if they are around their baby too much. The parents are usually the ones making the call.

     I know in the big scheme of things, this is a small price to pay for the wonderful care he is receiving at the hospital. The doctors and nurses work so hard on his behalf, and modern technology saves his life every day. But it still is difficult sometimes and I think that's important to address--and see if others have shared in this experience. 

Singing to Skyler for the first time

The girl who's baby was next to mine for a week started singing to her baby while she was holding him. I knew that reading to premature babies was important, but she said she read in a magazine that singing was even better. I had been a little embarrassed to sing to Skyler because he's in an incubator--unlike her baby--and I'm never alone with him. But it sounded so comforting and soothing hearing her sing to her baby that I thought it might comfort Skyler too. I lifted the little blanket up that covers the top of his incubator, and started to sing softly.
I have always told Chris that I wanted to sing this song to our kids that my parents used to sing to me. I think I was too young to remember my mom singing to me as much, but I do remember being rocked in my dad's arms and having him sing to me in his sweet, and somewhat off-key voice. It's one of the best memories I have of my dad and I've loved that song ever since.
Well, when I started singing that song to Skyler, the words took on an entirely new meaning. It's incredible how the second verse seems tailored to him and his situation. I started choking up once I realized it but I really wanted to finish the song:

My Heavenly Father Loves Me

Whenever I hear the song of a bird or look at the blue, blue sky,
Whenever I feel the rain on my face or the wind as it rushes by,
Whenever I touch a velvet rose or walk by our lilac tree,
I'm glad that I live in this beautiful world Heavenly Father created for me.

He gave me my eyes that I might see the color of butterfly wings.
He gave me my ears that I might hear the magical sound of things.
He gave me my life, my mind, my heart: I thank him reverently,
For all his creations of which I'm a part
Yes, I know Heavenly Father loves me.

When you think of the fact that Skyler had a 20 percent chance of survival (and that's not even counting the fact that he was born breech, and the doctors said his head would most likely get stuck in the birth canal and he'd die), and that he was/is likely to have severe damage to his eyes, brain, and organs in his body-- it's truly a miracle and makes this song that much more meaningful.
This was also the day that they told me that Skyler was going to need heart surgery. So I sang the song to him a couple more times to comfort him in preparation for the difficulties ahead, and remind him of what the Lord has done for him--and probably, even more so, to comfort and remind me that everything is in the Lord's hands.


Chris took a picture of me singing this song to Skyler right before his surgery