You'd Think I Had a Newborn Baby Again.

That's what life with Smiley has been like since Thursday after his surgery. He sleeps in 1-3 hour stretches and up crying. More darling. Mommy and Daddy or exhausted too! I appreciate his thoughtfulness in helping prepare me for the arrival of his little sister, but I guess he doesn't understand, I need to rest up BEFORE she comes home.

Smley was fighting a fever most of the day yesterday, so I'm sure that made him a little more miserable. He has been keeping his tongue stuck out all the time. I guess he thinks there's no more room for it in his mouth now that he has a palette. One more big operation left, hypospadia repair. Do a google search to find out what it is, don't want to discuss his private parts hear. After that, we just start seeing a dentist to pull crooked baby teeth, then when he gets 5-6 yrs old, he will need some oral surgery, then braces.

I'm not sure when we will remove the feeding tube. We have to start all over again. I tried feeding him baby food but he didn't want to put his tongue back in his mouth to swallow it. I've been tube feeding him this weekend to let his palette heal. I know his mouth has got to hurt.

Ok, so I guess you're wondering about Princess now? Well, we met with her worker yesterday and she signed the papers saying she was in our care, but we can't date them until we take her home from the hospital. When I called to check on Princess Thursday evening, I learned that she had her feeding tube placed. I was very upset they didn't call me to let me know she was having surgery, again. I asked her worker about this and she said legally they can't give me any information in writing and don't have to tell me anything! I figured this was the case and it's horrible! When I call everyday, I just pray that she has a good nurse that day who will give me a good update. Thursday and Friday when I called the nurse told me nothing except she was doing fine. I've been terribly upset and stressed worrying about her and having no information. Thank goodness her nurse today was one I knew well and gave me some good information, L actually called the hospital first and this is what he told me:

L: I called the hospital to check on our little girl.

Me: Really? how is she?

L: She's doing good. The nurse said they did something, something and something and she's sleeping now.

Me:(calling nurse back): How's Princess doing?

Nurse: She's fine. Your husband actually just called.

Me: Yeah, I know, he told me ya'll did something, something, and something and she went to sleep.

Nurse: (laughing) real specific huh? Well, she's off her IV fluids and taking her full feeds.

Me: Is she still on the feeding pump or bolus(fed with syringe) fed?

Nurse: We're bolus feeding her.

Me: She's taking all her food at one time then? So she shouldn't need to come home on the feeding pump then?

Nurse: nope!

I'm still dying to go visit her, so maybe if L, Smiley and I get enough rest, we can check on her tomorrow. I hate that she just had surgery and we can't be there. It's rough having two babies having surgery the same day at different hospitals.

Well, I'm gonna try and catch a nap before Smiley wakes up again. Thanks for the continued thoughts and prayers.

Cleft Palette Repair is Complete

I don't have a lot of energy to go into too many details, but Smiley's cleft palette was repaired this morning. When the doctor talked to us after surgery, I asked how much of the palette he was able to close and he said, "all of it." Also, he said since Smiley had a g-tube, he could go home today instead of staying overnight. Normally they have to be able to take food by mouth, but since he had a g-tube, he didn't have to worry about it. He did take around 3 oz apple juice with occupational therapy before we left. I'm so proud of my big boy!

Bio mom behaved well, except for the fact that her and the boyfriend were loud and just had to wake him up. So nice of them to wake him so he could be in pain! Poor darling. At least there were no incidents at the hospital, and I was able to bite my tongue as she was wanting to feed him.

I'll go into more detail when I get the energy. I was up at 3:30am to have him at the hospital for 5 am!

6:00 A.M.

And I'm up, wide awake. We decided to stay at my parents for the night, which is fine, expect L, Smiley and I are sharing a room.

Smiley has a sinus infection...which causes his to sniffle and snore ALL NIGHT LONG! I finally gave up and got out of bed. I do pray he heals before Wednesday so we can proceed with his first palette surgery.

Princess' situation is driving me nuts too. I was actually able to speak to a doctor on the phone yesterday! I wish I would have known the nurse was gonna let me talk to a doctor BEFORE I called so I could have wrote down questions. Basically I asked what was the game plan for getting her eating and home. He answered like a politician, answering my questions but not really answering them. Finally after listening to him go throught all the tests and issues she had over the 3 months she's been there(which I already knew about) I said, "when ae ya'll gonna make a decision about the g-tube." He said probably next week, but they are leaning towards thinking she will need it! You think!! They've only been unsuccessfully attempting to bottle feed her for almost a month! I know this because I call the hospital everyday writing down the date, nurse's name and what they tell me. This was probably one of the best decisions I made and would highly reccommend it to anyone having a baby in the NICU.

If she could just be released for one hour, she could be signed into our care, and we could have a say in her medical treatment. In the meantime, Princess remains stuck in a hospital bed, starving for attention while the hospital piddles around!

Another Surgery

They can to Operate on Princess again to adjust the PA? band they put in for her heart in the first surgery. They hope this will help the respiratory problems and think it was causing her lungs to not be able to open all the way before.

So we start all over again and I can' t even hold my little girl to comfort her.

All the hope I had, and have to start all over again.

Little Head Poking Up

L went to check on Smiley before he went to bed and he was standing, holding onto the crib bars with his head barely above the bars laughing. He had pulled himself up to a standing position the first time! L was worried. I was ecstatic!

Another first, this Saturday, Smiley got himself into a sitting postion on his own. He's still not sitting up straight, but sitting with the support of his hands.

Princess is doing about the same as Sunday. They did say they were feeding are more and decreasing the sedation, but still an extremely slow process. I believe she will begin to heal faster once we can hold her and she gets the cuddling she needs. She's about 6 weeks hold, been visiting her the last two weeks, still patiently waitng to hold her and bring her home. Her worker is on vacation again this week. Must be nice to take off two weeks in a row. Anyway, I don't need much from her. I just need to sign papers saying we will be her foster parents and have her arrange to allow us to pick her up from the hospital when she is released.

Teething

Apparantly, Smiley thinks I need some preparation for Princess's arrival. Now my little guy is doing me the "favor" of re-adjusting my sleep schedule to wake up several times a night to his wailing. He is eating, but being lazy with eating sometimes, because now I know he can do it. While he was screaming when I was trying to feed him I noticed two small bumps in his lower gums. Could he be getting two teeth at once? I'm in for trouble!

I called for an update on Princess and they are gradually weaning her off the feeding tube and she is still on IV drugs that require her to stay in the ICU. I know she won't be released this week, but maybe next week? I miss her so much. It was so hard to leave her at the hospital. Of course, no need to rush her home, I want her home healthy and strong. Please pray for a quick recovery so we can bring our little girl home.

Little Toes

Per Julie's suggestion, baby N will now be referred to as Smiley, and should we take the new baby, she will be Princess.

Among Smiley's many medical needs, he is having a very minor surgery this morning to fix his toes. On each foot, one of the toes lays on top of another toe. I don' t know the medical term, but this is being corrected today. It should take less than 5 minutes.

After today, we should only have 2-3 more surgeries for Smiley:

1-2 surgeries for cleft palette repair
1 surgery for hypospadia repair

Oh yeah, I absolutely must brag on Smiley. He ate a whole jar of sweet potatoes! It was a smaller one, but he ate every bite, plus a little fruit, some juice all in about 20 minutes time! I'm glad I decided to hold off on Occupational Therapy. Now that his O/T told me it was safe to feed him, even if it came out his nose(sorry to be so graphic), I have less fear and can enjoy feeding my baby. Such small milestones are a big deal for Smiley.

Last night I had Smiley on the floor and he got into an almost sitting position on his own! He has also been getting into crawling position on his own and rocking, so his P/T thinks he will be crawling by Thanksgiving. On the other hand, his bio mom is SURE he will be walking in January for her birthday. Talking to Smiley's paternal grandma, she said his father did not walk until he was 2! It would be wonderful to have Smiley walking, or at least sitting well on his own before our Disney World trip.

We are just patiently working with him and celebrating small milestones