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