Here's a clip of Skyler off the ventilator and on the CPAP machine.(The tube in his mouth is his feeding tube.)Yes, the other video was a lot nicer but that's because Chris did it:) In this clip he is 28 weeks gestation, weighing 1 lb. 13 oz.
Skyler decided to try the water they put on the cloth to clean his mouth. He's about a month or so away from eating by mouth, but he seems excited to start. Taken Feb. 23, 2012
Monday, February 27, 2012
Sunday, February 26, 2012
Two whole pounds at 6 weeks old
Skyler has taken a few steps forward, a few steps backward, and then a few steps forward again with gaining weight. Today he has finally made it up to two pounds! He will be 6 weeks old tomorrow/ 29 weeks gestation. They sure grow up fast, don't they?:)
They put him on a nasal inhale pressure ventilation, or NIPV, once he got off the ventilator. It gave him pressure to help him keep his lungs from collapsing between each breath so he doesn't have to work as hard. It also gave him oxygen and a few breaths if he needs it.
He did so well on it that a few days later they switched him to the CPAP machine! It's a CPAP bubble; it doesn't give him any breaths, just pressure and oxygen. He's been on the CPAP machine for six days now and he's doing amazing on it. We are so proud of him.
Here are some pictures of him weighing two pounds.
They put him on a nasal inhale pressure ventilation, or NIPV, once he got off the ventilator. It gave him pressure to help him keep his lungs from collapsing between each breath so he doesn't have to work as hard. It also gave him oxygen and a few breaths if he needs it.
He did so well on it that a few days later they switched him to the CPAP machine! It's a CPAP bubble; it doesn't give him any breaths, just pressure and oxygen. He's been on the CPAP machine for six days now and he's doing amazing on it. We are so proud of him.
Here are some pictures of him weighing two pounds.
Thursday, February 23, 2012
Off the ventilator and moving forward!
It was the sweetest thing-- hearing Skyler cry, sneeze, and hiccup for the first time, at 5 1/2 weeks old/28 weeks gestation. He was able to come off the ventilator just a few days after having the surgery. His voice was a little raspy at first, but soon one of the nurses was commenting on how strong his voice was for his size--all 1 lb. 10 oz of em'.
I had anticipated hearing him cry, but I wasn't expecting to hear him hiccup and sneeze. I had gotten so used to seeing him do it without any sound. I was surprised when I heard this cute little noise accompany it. It was the cutest thing ever.
Hearing his voice was exciting and comforting for many reasons. One being, that it meant the surgery went well. One of the risks of the surgery is that it can irritate the nerve that controls his vocal cords and affect his voice. If the nerve is irritated enough, it can cause his food to go into his lungs instead of his stomach. The risks are higher if the baby is smaller, like Skyler. So hearing his voice is a great sign that he isn't showing any signs of complications from the surgery so far.
It is also such a blessing because I don't feel like I have to worry about him as much. It's comforting to know he has a voice and can speak up for himself. If he needs something, he can let the nurses know. I don't feel like I have to watch him every second I am there to see if he is doing okay. I had to pray--well--beg that the Lord would help him, and then try not to worry myself sick. Now that the ventilator is off I have a sense of relief.
When we were driving home from the hospital that night, Chris said he loved hearing Skyler's voice because it made him seem like a real baby. Of course, he's always seemed 'real' to us-- but it's obviously a different experience than having a full-term baby. Especially at first--he's hooked up to so many cords and machines. He can't be bothered by too much light or noise because it might cause bleeding in his brain. He can't be held; he can't breath on his own or regulate his own body temperature. His skin is somewhat see-through and his little eyes are sealed shut. It's just an insane experience. I didn't even touch him until he was five days old because I was afraid of hurting him. So, it is nice to see him progressing and doing real baby things. But, at the same time, it's been wonderful to watch him each step of the way.
Chris and I have both thought at different times; Couldn't we just go to sleep and wake up one day when he's all better and ready to come home? But, in reality, wouldn't that be sad. Yes, we would have missed seeing him go through pain and stress and fear. But even though it's awful to see, I'm happy to say that I was there with him during a lot of those times, and that maybe he heard my voice and was comforted. Plus, we would have missed all the good things too-- seeing his little fighting spirit and all the amazing miracles since the beginning. Things that I never would have seen or appreciated otherwise. Like, seeing his eyes open, one at a time, after being sealed shut, seeing the little hairs or fuzz on his body before it all falls off, watching the lines develop more fully on the palms of his hands, seeing his little eyebrows form, things like that. Wonderful things.
It's always funny to me when I get the baby center emails now. The ones that tell you about your baby's progress each week. You know, the ones that compare your baby to a type of fruit; "You're baby is about the size of a mango this week," that sort of thing. I still open them up and read them. In my last one the subject read, "See what your baby looks like." Oh the irony of it all.
I had anticipated hearing him cry, but I wasn't expecting to hear him hiccup and sneeze. I had gotten so used to seeing him do it without any sound. I was surprised when I heard this cute little noise accompany it. It was the cutest thing ever.
Hearing his voice was exciting and comforting for many reasons. One being, that it meant the surgery went well. One of the risks of the surgery is that it can irritate the nerve that controls his vocal cords and affect his voice. If the nerve is irritated enough, it can cause his food to go into his lungs instead of his stomach. The risks are higher if the baby is smaller, like Skyler. So hearing his voice is a great sign that he isn't showing any signs of complications from the surgery so far.
It is also such a blessing because I don't feel like I have to worry about him as much. It's comforting to know he has a voice and can speak up for himself. If he needs something, he can let the nurses know. I don't feel like I have to watch him every second I am there to see if he is doing okay. I had to pray--well--beg that the Lord would help him, and then try not to worry myself sick. Now that the ventilator is off I have a sense of relief.
When we were driving home from the hospital that night, Chris said he loved hearing Skyler's voice because it made him seem like a real baby. Of course, he's always seemed 'real' to us-- but it's obviously a different experience than having a full-term baby. Especially at first--he's hooked up to so many cords and machines. He can't be bothered by too much light or noise because it might cause bleeding in his brain. He can't be held; he can't breath on his own or regulate his own body temperature. His skin is somewhat see-through and his little eyes are sealed shut. It's just an insane experience. I didn't even touch him until he was five days old because I was afraid of hurting him. So, it is nice to see him progressing and doing real baby things. But, at the same time, it's been wonderful to watch him each step of the way.
Chris and I have both thought at different times; Couldn't we just go to sleep and wake up one day when he's all better and ready to come home? But, in reality, wouldn't that be sad. Yes, we would have missed seeing him go through pain and stress and fear. But even though it's awful to see, I'm happy to say that I was there with him during a lot of those times, and that maybe he heard my voice and was comforted. Plus, we would have missed all the good things too-- seeing his little fighting spirit and all the amazing miracles since the beginning. Things that I never would have seen or appreciated otherwise. Like, seeing his eyes open, one at a time, after being sealed shut, seeing the little hairs or fuzz on his body before it all falls off, watching the lines develop more fully on the palms of his hands, seeing his little eyebrows form, things like that. Wonderful things.
It's always funny to me when I get the baby center emails now. The ones that tell you about your baby's progress each week. You know, the ones that compare your baby to a type of fruit; "You're baby is about the size of a mango this week," that sort of thing. I still open them up and read them. In my last one the subject read, "See what your baby looks like." Oh the irony of it all.
Wednesday, February 15, 2012
A Great Recovery
The nurses warned us that Skyler would most likely get worse before he got better after the surgery. The doctor said he would probably get a chest tube put in; they are supposedly pretty painful and increase the risk of infection. Luckily, neither one of those things came true. What a blessing.
The cardiologist told us that right when he put the clip on Skyler's PDA, his blood pressure immediately went up. He also didn't have to put a chest tube in because he didn't go inside his chest cavity, or something like that. I wasn't sure what that meant but I didn't ask any questions about it. I was distracted by him telling us that Skyler had another hole in his heart besides the PDA and the fistula. He assumed we knew and breezed over it by mentioning that his daughter had one hole and never had a problem. I decided not to ask too many questions about this new discovery; the surgery was enough to think about. When we saw Skyler after the surgery, we could see that his coloring already looked better-- more pink.
The next few days after the surgery Skyler was extremely stable with his oxygen needs so they weaned him down on his ventilator settings. We learned it won't be too long until he comes off the ventilator all together! A couple days before the surgery, he was doing so well that they switched him to a different ventilator. He seems much more comfortable on this new one because it's not constantly shaking his entire body. For example, the new ventilator gives him 22 breaths per minute. The other one gave him 540 per minute. Also, the new one only kicks in if he is not breathing on his own so he is able to do a lot of the work himself.
Another great thing about the new ventilator is... he can do Kangaroo Care on it!! (After he heals from the surgery) I'm so excited; I have been looking forward to Kangaroo Care more than anything else. I get to hold him, skin to skin, against my chest. Knowing it's been right around the corner this past month is what's kept me sane. I really don't entertain thoughts of him coming home very often. It seems too far off. But Kangaroo Care-- I think about it all the time. It's actually what I picture in my mind every time I hear that song on Chris' video. My huge preemie book I'm reading says it will be a great comfort for Skyler too. He's used to hearing my heart beat. It will also help him regulate his temperature and handle his feedings better. The nurses say it's one of the best things a mother can do for a premature baby. I know it's one of the best things I can do for myself. Oh, and Chris can do it too.
Speaking of Chris, on Valentine's Day, he got to hold Skyler for the first time. It was time to change Skyler's incubator again. He didn't have as many lines in his body so the nurse swaddled him up nice and cozy for the occasion. He seemed so content in Chris' arms, just sucking away on his binky and looking around. Chris didn't want to put him back in his incubator. Who can blame him?
Tuesday, February 14, 2012
Right Before Surgery
The surgery team comes over from Primary Children's Hospital and does the surgery in one of the NICU rooms at the U of U Hospital. It's the room Skyler was in when he was first born. You can see how they lift up the top of his incubator, put a heating pad and something sterile under him, and do it right there.
I sang to Skyler before his surgery to comfort him. It's a song my parents used to sing to me. I remember my dad rocking me and singing that song. I'll write more about that in another post.
Skyler likes having boundaries, and he didn't have any at that moment so I gave him some.
Monday, February 13, 2012
One Step Closer...
Leah's the writer between the two of us, so I thought I could contribute to the blog through making a video of Skyler getting his cares. He is the most incredible spirit I have ever had the privilege to be around. We love him, and are so grateful he is with us and that he is doing so well. Enjoy!
Sunday, February 12, 2012
Heart Surgery, What?
I'm sorry I didn't update you about Skyler having heart surgery sooner. It came so suddenly that there wasn't much time to process it, much less write the details down.
They started Skyler on steroids last Wednesday night, Feb. 8, and we could see the difference in him immediately. The very next day he seemed more at peace, even happy at times-- not constantly grimacing or looking uncomfortable. The video Chris made shows some of these moments. Skyler's lungs have been inflamed with fluid in them for about a week and a half before he started the steroids. It's been pretty irritating and stressful for him. I was constantly thinking of what I could do or suggest to the nurses to make him more comfortable.
When he's uncomfortable or agitated, he likes to move his head to one side or the other, but with the stiff ventilator tubes attached he can't. Sometimes, I look in his incubator to see the ventilator pulling on his face because he has moved, or he's frustrated because he's trying to move. I try to help him with that.
It's hard knowing that he can't make a sound when he's in distress because he's on the ventilator. It's almost automatic to look over at the other baby in the room when they cry or fuss. But he doesn't have that luxury. Most nurses leave him be for a few hours if his vital signs are good. But that doesn't always mean everything is okay. For instance, one time I lifted the blanket on the top of his incubator and looked in to see him stuck partly face down in the bed, smashing his nose and face, with his skin being pulled to one side by the ventilator. He had tried to turn his head.
But with the steroids, there has been less to worry about. He seems more content and less anxious to move because his lungs aren't being as irritated. Right away the steroids made his oxygen needs go down. During the week and a half before he got the steroids, his oxygen needs were anywhere from a 40 to 100 percent; With the steroids he has been consistently around 22 to 27 percent, close to what we breath. The inflammation in his lungs also went down.
So you can see how it was surprising when last Friday night the nurse practitioner told me that they wanted to do heart surgery within the next few days. Apparently, although the steroids are helping, his heart is still having to work too hard, causing extra blood flow to the lungs and heart enlargement. They did an echo on Friday and saw that the PDA, or opening in his heart, had gotten bigger. The doctors do an exam that gives number they use to determine how hard the heart is working and the risk of heart failure. The normal number should be under 100. His test, about 5 or 6 days ago, showed his number was at 200-- still higher than we wanted it to be but an alright number. His test on Friday was clear up to 2,000. Something they were pretty sure was being caused by the PDA.
The NICU team wanted to do the surgery to close his PDA while he was stable. This took me off guard. He was doing so well. I wasn't prepared for things to change so quickly-- You think I would have learned by now.
Although the surgery seems scary to us, it's pretty routine at the University of Utah Hospital NICU. It's not like open heart surgery; the arteries they work on are just away from the actual heart muscle, and they enter in through his side and put a clip on the vessel right outside of his heart. Of course, some of the risks are higher because he's under 2.2 pounds, but that's how it has been all along.
They started Skyler on steroids last Wednesday night, Feb. 8, and we could see the difference in him immediately. The very next day he seemed more at peace, even happy at times-- not constantly grimacing or looking uncomfortable. The video Chris made shows some of these moments. Skyler's lungs have been inflamed with fluid in them for about a week and a half before he started the steroids. It's been pretty irritating and stressful for him. I was constantly thinking of what I could do or suggest to the nurses to make him more comfortable.
When he's uncomfortable or agitated, he likes to move his head to one side or the other, but with the stiff ventilator tubes attached he can't. Sometimes, I look in his incubator to see the ventilator pulling on his face because he has moved, or he's frustrated because he's trying to move. I try to help him with that.
It's hard knowing that he can't make a sound when he's in distress because he's on the ventilator. It's almost automatic to look over at the other baby in the room when they cry or fuss. But he doesn't have that luxury. Most nurses leave him be for a few hours if his vital signs are good. But that doesn't always mean everything is okay. For instance, one time I lifted the blanket on the top of his incubator and looked in to see him stuck partly face down in the bed, smashing his nose and face, with his skin being pulled to one side by the ventilator. He had tried to turn his head.
But with the steroids, there has been less to worry about. He seems more content and less anxious to move because his lungs aren't being as irritated. Right away the steroids made his oxygen needs go down. During the week and a half before he got the steroids, his oxygen needs were anywhere from a 40 to 100 percent; With the steroids he has been consistently around 22 to 27 percent, close to what we breath. The inflammation in his lungs also went down.
So you can see how it was surprising when last Friday night the nurse practitioner told me that they wanted to do heart surgery within the next few days. Apparently, although the steroids are helping, his heart is still having to work too hard, causing extra blood flow to the lungs and heart enlargement. They did an echo on Friday and saw that the PDA, or opening in his heart, had gotten bigger. The doctors do an exam that gives number they use to determine how hard the heart is working and the risk of heart failure. The normal number should be under 100. His test, about 5 or 6 days ago, showed his number was at 200-- still higher than we wanted it to be but an alright number. His test on Friday was clear up to 2,000. Something they were pretty sure was being caused by the PDA.
The NICU team wanted to do the surgery to close his PDA while he was stable. This took me off guard. He was doing so well. I wasn't prepared for things to change so quickly-- You think I would have learned by now.
Although the surgery seems scary to us, it's pretty routine at the University of Utah Hospital NICU. It's not like open heart surgery; the arteries they work on are just away from the actual heart muscle, and they enter in through his side and put a clip on the vessel right outside of his heart. Of course, some of the risks are higher because he's under 2.2 pounds, but that's how it has been all along.
Tuesday, February 7, 2012
How is he doing now?
3 weeks old or 26 1/2 weeks gestation
Some of you have been asking for updates on our little man. Well, good news, Skyler is up to full feedings! 13 milliliters every 3 hours. He was getting nutrients and vitamins through IVs or a picc line before. But now they have taken out all his lines! At least, for now. He has to be happy about that. Now, all his medicine is given to him in his food. I'm so happy he is getting my milk; It will give him the antibodies he needs to fight infection and help him grow. He is already so strong for his size, and feisty-- Chris says he gets his feistiness from his mom :)--But the milk will make him even stronger! Plus, knowing he is getting it makes me feel closer to him. And it makes all the pumping very gratifying. It's nice to know I can help him in that way.
The swelling in his body, from the PDA medicine, has mostly gone down and he looks so much like Chris to me. He has his chin, nose and mouth. His mouth looks big to me so I'm hoping, when he smiles, it goes all the way to his eyes like his dad's.
He had two rounds of the PDA medicine for the opening in his heart. The medicine made it smaller but it didn't close. He may have to have surgery on it later on if it doesn't close on it's own. He also has a fistula or another little connection in his heart. The head NICU doctor said he has only seen it a couple times before in his career. It can cause his heart to work harder because it is pumping around extra blood, or it may have little to no effect at all.The fistula has nothing to do with being premature. He would have had it anyway but we just wouldn't have known about it.
For about 8 days, his chest x-ray has shown a cloudy picture and he has been volatile on his oxygen needs. I talked to the doctor yesterday and he said the cloudy x-ray meant inflammation in the lungs and that they are not inflating enough. The lung inflation issues they can fix with his ventilator settings. The inflammation comes from his lungs not being prepared for oxygen so early, and from the irritation of the ventilator over an extended period of time. They are worried that the inflammation can spread to other parts of his body, like his brain, causing damage. They are starting him on an extremely low doses of certain steroids to help solve that. Thank you for your prayers. I know they make a difference. In your prayers, it would be wonderful if you could pray that the inflammation will go down in his lungs and that his lungs will be protected. Thank you, thank you, thank you.
Some of you have been asking for updates on our little man. Well, good news, Skyler is up to full feedings! 13 milliliters every 3 hours. He was getting nutrients and vitamins through IVs or a picc line before. But now they have taken out all his lines! At least, for now. He has to be happy about that. Now, all his medicine is given to him in his food. I'm so happy he is getting my milk; It will give him the antibodies he needs to fight infection and help him grow. He is already so strong for his size, and feisty-- Chris says he gets his feistiness from his mom :)--But the milk will make him even stronger! Plus, knowing he is getting it makes me feel closer to him. And it makes all the pumping very gratifying. It's nice to know I can help him in that way.
The swelling in his body, from the PDA medicine, has mostly gone down and he looks so much like Chris to me. He has his chin, nose and mouth. His mouth looks big to me so I'm hoping, when he smiles, it goes all the way to his eyes like his dad's.
He had two rounds of the PDA medicine for the opening in his heart. The medicine made it smaller but it didn't close. He may have to have surgery on it later on if it doesn't close on it's own. He also has a fistula or another little connection in his heart. The head NICU doctor said he has only seen it a couple times before in his career. It can cause his heart to work harder because it is pumping around extra blood, or it may have little to no effect at all.The fistula has nothing to do with being premature. He would have had it anyway but we just wouldn't have known about it.
For about 8 days, his chest x-ray has shown a cloudy picture and he has been volatile on his oxygen needs. I talked to the doctor yesterday and he said the cloudy x-ray meant inflammation in the lungs and that they are not inflating enough. The lung inflation issues they can fix with his ventilator settings. The inflammation comes from his lungs not being prepared for oxygen so early, and from the irritation of the ventilator over an extended period of time. They are worried that the inflammation can spread to other parts of his body, like his brain, causing damage. They are starting him on an extremely low doses of certain steroids to help solve that. Thank you for your prayers. I know they make a difference. In your prayers, it would be wonderful if you could pray that the inflammation will go down in his lungs and that his lungs will be protected. Thank you, thank you, thank you.
Enjoying the milestones along the way
It's interesting because a few days after I wrote the post about having a hard time that I couldn't hold Skyler, and comfort him when he was upset--I got to hold him! It just so happens that we showed up right when they were changing his incubator. I guess the nurses do it every two weeks to avoid infection. He felt so warm in my arms. I held on to part of the tubes in his mouth while I held him, even though there was someone holding it for me. I'm always concerned that it's not comfortable enough for him so I held it closer to his face to give him more support. It was only for a few minutes but I loved it. I probably would have enjoyed it even more if I wasn't so concerned about his tubes and IVs. It's hard not to be but I'm sure I'll get more and more confident as time goes on. Heck, I might even let Chris hold him one day :) Oh, and I know it looks like I have man hands in some of these pictures, but they're actually Chris' hands I promise.
Sunday, February 5, 2012
Skyler Christopher's baby blessing
More pictures to come
Chris gave Skyler a name and a blessing yesterday. We heard that giving a premature baby a name and a blessing early can act as a shield and protection to them. There is a small chapel in the hospital right next to the NICU. Chris' dad had the idea to reserve it and do a little devotional beforehand. My parents and brothers drove up and Chris' family was there. It was one of the most memorable experiences of my life. We sang and Chris' sister and I spoke. Chris made little programs and put the picture of Christ holding a little baby in his hands on the front. That really touched me because, during the whole ordeal, I prayed that if the Lord could move mountains and create worlds without end, then he could save our baby's life. He was, and still is, in the Lord's hands.
After the devotional, the men and I went into Skyler's room. I put the phone on speaker and called a phone in the chapel room so that the rest of the family could hear. Chris reached his hand through one of the holes in the incubator and touched Skyler's head and then my dad, at the end of the semi-circle, put his hand in the other hole and touched Skyler's leg. I listened as Chris blessed Skyler's body and talked about him knowing by what power he was brought into this world. The Spirit was really strong. It was especially touching when Chris talked about him getting married one day and that angels are watching over him.
You think you know what love is...
This whole experience with Skyler has made me think about what I thought I knew about love. It's kind of a tongue twister I know. You think you know what love is when you have your first big crush, or get kissed for the first time, or even when you get married, and celebrate a couple anniversaries. But my love for Chris now and for Skyler is something different. Something deeper and more real. I look in at Skyler's teeny body in the incubator each day and just feel so much love.
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