11/5 We had a couple pre-op things to do today. Brian and I are secretly hoping something will come back causing the surgery to be canceled! While we understand the surgery is something that is necessary, I don't think any parent is ever excited to watch their baby go through pain. Putting it off isn't going to do us any good but it sure would be nice if say, her MRI showed so much improvement that the Dr. decided it wasn't necessary! We had the MRI at 9:30. Eden did WONDERFUL! She has never laid so content. She was even playing with the apparatus that goes around her head, just laying there as still as can be, NOT CRYING! Amazing really! After the MRI we met with one of the fellows who explained some things to us. We got her hooked up to do a urine sample and then went a floor up to get some blood drawn. We saw the lab order for several tests and thought it was going to be miserable trying to get that much blood. Instead, it was another blessing as she laid there with no tears and played with the child life specialist who had fun intriguing toys! They put an iv in her arm and we never once heard her cry or saw her flinch!
11/6 We arrived at the hospital at 6:30am, around 7:50am they marked her head and I carried her back to where they would give the anesthesia. I laid her on the warm bed. She looked up at all the lights and strange faces and was terrified. She didn't even make a noise but she was crying. She was so scared. I pulled in close to her and she calmed down. I was so thankful to be in there with her. They put the mask on her and in less than a minute she was out. We got notified at 9:45 that the incision was made. Brian and I weren't alone, his parents came to keep us company and support us. And of course, be there for Eden.
We were told at 11:00 that she was out of surgery and it went well. We are supposed to go have a consult with Dr. Menezes in about 15-20 minutes.
Dr. Menezes said surgery went well. He said she is going to need to stay flat for the first day. We get to see her in about a half hour in recovery. He ended up putting in an adult valve because he said that it is more precise on it's programming and it's really not that much bigger. He said there's less of a chance we would have to re-do it too. He said he did end up opening it a little bit which is why she needs to stay flat. He wants it to be stable before adding in the natural gravity of sitting up.
Recovery was rough. She woke up and noticed Brian and I but was very grumpy about being there. It escalated the more hungry she realized she was and the more she realized I was standing right next to her and not feeding her. She hasn't cried that hard for that long ever. She would take the bottle of pedialite but then throw it because she has never taken a bottle and was mad it wasn't what she wanted. We then tried some pumped milk in a bottle, still the same problem, then we tried a sippy cup because at home that's how I give it to her for lunch, but she was just being stubborn. We were on our way to the PICU when she finally decided she was hungry enough to drink some of the pedialite. She started to settle down but got upset again when it was gone. I then filled the bottle with BM and she drank it right down before falling asleep. She has a very raspy voice and a bark to her sleeping, but the nurses said it will get better. She had to have a breathing tube so her throat is probably a little sore. She woke up from a little sleep and was a totally different kid. She was playing and talking to us. She got hungry and downed 5.5 oz before falling fast asleep again! The rest of the evening was pretty uneventful. We had a couple visitors. Mike Brost came and surprised us and stayed for almost an hour talking with us and before leaving prayed with us. My sister Emily was in DesMoines for a conference and went home in a round-about-way, stopping here first. It was so great to see her! Eden was sleeping some of the time while she was here but Emily was able to see her awake and happy before she left.
The night went very well. Eden had tylenol around 6pm and didn't have it again until 5:00am. That is the only pain med she is on! Amazing, huh? We woke her at 11pm to do some bloodwork and feed her a bottle (they still have me pumping because they need to see how much she is taking in). She went right back to sleep and woke herself up shortly after 4am. She drank about 6oz., had an x-ray and some tylenol then went right back to sleep again. She is such a good baby!!
11/7 At 7:50 I got the ok to nurse her as long as I could get in bed with her and keep her flat still. She ate like a champ! YAY!!! Dr. Menezes came in to see how she was doing and walked anxiously in the door saying, "how's my baby?" He really is a sweet man! He took one look at her and said, "you don't need to be in the PICU anymore. Let's get you out of here and in a regular room!" So sometime today we are one step closer to home! He said she looks wonderful but unfortunately he does want her flat for today again. He said that we could put her at 30 degrees to feed her lunch and supper but then she has to go flat right away again. So far this hasn't been a problem, she is content on her back, praise the Lord! There are moments where we have thought she was going to lose it but we can usually distract her with a toy or something! God is so good and is definitely holding my baby in His arms while I can't. She is perfect because God made her perfect just for me! I will post more later! In the meantime, here are some pictures from Sunday to today...
We had little space in our RMH room for her to play but she still managed to crawl around a bit! Brian and I took turns getting pictures with the star! She is naked on the bed because we had to give her a bath and then wait an hour and rub her down with some sterilization clothes. They are sticky and take a few minutes to dry so she is just hanging out naked playing with some paper! I love the top picture of Brian and her. She has a finger on her nose and a finger on his! The one of her standing is at our pre-op apt. She decided she was big enough to go 'no-hands' so I had to quickly put my hand on her back for support!
Eden agrees that 6am is too early to be awake and in a car seat! We put her in a gown (5 times too big)! Mommy and Eden about to go back to anesthesia...she looks worried :(
And she's OUT :(
Hungry after a rough time in recovery, taking the pedialite.
Sleeping peacefully. Watching a sleeping baby never gets old!
So sweet :)
Just about to go out...so sleepy after a good nursing!
1 comment:
Oh, Sweet little thing. So glad all went well, Erin! Praying for a speedy and full recovery!!
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