Our Loves

Wednesday, April 28, 2010

3 days down!!

Well we made it through days 1, 2 and 3. The first day we just had our evaluations and meetings with the team. We had discussions about the NG tube and then discussions about our goals here. It seems like the consensus is that a lofty goal is to get him chewing on some melt away solids, like a baby puff or puffed cheeto. They said that we might not even be there by the end. So our dreams of Preston eating pizza this summer were just that - dreams. This is not exactly what we were hoping to hear, but it seems to be in line with what the pedi has said. I am praying, praying, praying that they get him to a puff!! That is huge hurdle and it's something we can advance on more easily with outpatient therapy and work at home. The past two days his speech therapy has been a slow process and they are really just trying to figure out the best approach for him. I hope by Friday they have a pretty set plan and start to make a little progress with him.

The first day leaving him here (Tuesday) went ok, but today he started crying when I left and chasing after me. Poor little guy! I think he had figured out this wasn't so fun after all. When I got here today was very down and not acting very happy and not even babbling at all. I didn't here him say one thing for 2 hours. He is always a pretty independent player, but this afternoon he would only play by himself and he seemed so distant when I arrived. It really broke my heart and made me scared. I tried to read to him, but he didn't want to. We tried to swing outside in the courtyard, but that was a no go......but he perked up big time when Luke and Randy got here. He really, really missed Luke. Luke gave him the sweetest hug and later Preston sort of gave him one too - which is a first. Luke is usually the one who wants to play with Preston more so than vice versus. But Preston was following Luke around on the playground when he got here and he started "talking" more like he normally does. I think it became very obvious to us today that Preston likes having Luke around even if Luke usually just torments him. We are really going to make sure they get to spend as much time together as possible. This is certainly not fun for us, but he is the one having to be pushed past his comfort zone, alone with strangers these first two weeks, and in a whole new environment without his twin, so we are trying to make it as home like as possible when we get to be with him in the afternoon and evening. We gave them a bath here together just like at home and got them both ready for bed before Randy had to leave with Luke. I hope that helps Preston feel more secure and not so lonely.

I think last night sleeping was an adjustment for him too. He is usually a pretty good at sleeping no matter where we are and the first night he slept just fine, but last night was not so good. He woke up several times and was NOT happy! Luckily he was pretty easy to get to calm down and back to sleep, but I know he didn't get a good nights rest. I brought his radio and favorite bedtime CD up here and I'll leave it playing softly all night so maybe tonight will be better. We have to get up early - 7am - I know that's not too early to most people, but for the Hall Household it's early. Preston is actually better at waking up early than Luke, so that's good. I know Preston will be happy once I am able to stay throughout the day with him, but there's a lot of work to be done before that will happen.

Over the past two days Randy and I have gotten to meet most of the other Moms of the inpatient feeding kids. They,for the most part, have all been really welcoming, nice and friendly. At times it can get to be like swapping war stories around here with the other Moms. It's hard to not sit and go on and on with the other Moms about what Preston's been through and vice versus with their child. It can really bring all those scary feelings to the surface, not to mention depress the heck out of you that there are other children suffering through different things they may never get better for some of them. But the one great thing is it helps to not feel all alone in this. To see that Preston is not he only child who has severe feeding issues and to hear other parents say they hate NG tubes, too can help make this process easier!! We never really experienced that when the boys were in the NICU, partly I feel because they were at Baylor (if you can't figure out why, well, I am not going to tell you - but don't get me wrong we love Baylor and no matter where we move I will stay with my doctor to deliver again at Baylor) but I know some people who's preemies were born at smaller hospitals and they met a great network of other preemie parents and were able to share advice and successes and I am sure share the fears as well. So I know that meeting these other Mom will be a great support and resource as we go forward. One Mom already told me about a horse therapy program in Keller for sensory issues. I had thought about doing therapy with horses once Preston got a little older, but heck if they start at two I am certainly going to look into it.

It also makes the nights seem less depressing overall (as long as we don't spend hours strolling down medically history memory lane), because Randy and Luke are supposed to be out of here by 8 - but we have been pushing it to 8:30 ;-). So we all sit in a small little lounge area and tonight we all just did out own thing, but if you know me, I don't like to be alone, so it was nice to have the company.

Now these other Moms are smart and head to bed around 10, but that doesn't work for me so I am just sitting here alone on the computer. I have trouble sleeping at home on a good night, much less in a hospital with nurses coming in every few hours. They just poke their head in, but it seems to always wake me up, so I may end up addicted to ambien cr before this is all said and done. I am still trying to give myself a couple more nights and just sticking to benedryl, but so far that isn't cutting it. I hate taking ambien night after night, because it definitely does make your sleep problems worse for a while after you stop. I had to take it when the boys where at Children's and I had a hard time getting normal sleep again once they got out, so I am going to try some other things first. I might try melatonin, but I've heard similar things about it as well.

I always take a bath before bed and the rooms here don't have private bathrooms - ;-( !! We had to scrub down the bathroom with the tub so we could give the boys a bath tonight and their are two more that have showers, but it really grosses me out. So I am sriously craving my nightly bath and I think I may have to give in and try the shower because I am going through my bedtime bath withdrawl. I brought shower shoes, our own towel and I will spray it down, too, but I can't decide if the creepy factor is over riding the cravings of my night time bath (subsituted by shower). I will probably have to get over it, because when I am here all day with him, I probably won't get a chance to go home and shower. This place is fairly new and nice, but a community bath room in a hospital just gives me the creeps. Our Lifetime Fitness is probably about half way in between here and our house, so I might could run up there some times when I am here all day. Who knows?? Preston and Luke didn't seem to mind - they were splishing and splashing and having a grand old time. They both go nuts when we say it's bath time and it always makes them soooooo hyper! So they could care less where their bath is.

Ok, I should probably head to bed. Thank you all so much for the prayers! I wanted to say a special thanks to a family who knows who they are. It is so amazing to Randy and I that people who don't know us, or go to our church or even live in this same town as us, keep us in their prayers and are so unbelievably generous to our family. I know that God answers prayers and I have to lay all my worries at his feet, because you know what - to this day God has never let us down. My prayers may not have been answered in my timing, with my answer, or in the manner I expected, but I truly know God hasn't left me hanging. So thank you all again so very, very much! Preston will know someday of all the generous hearts that kept lifting him up in prayer - I can promise you all that! Goodnight!!

1 comment:

  1. More prayers being sent to you! Change is hard for little ones, but it will get better! You are such a good mommy... take care of yourself, not just your sweet boys.

    And there is a horse-therapy farm in Wylie that Junior League Dallas works with that is supposed to be one of the best in the state. Might look into that one when you are checking out the other one. :)


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