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!!

Sunday, April 25, 2010

It's about that time!!

Sorry it has been so long since my last post. We have had lots of doctors appointments and stuff going on and I think I was dreading Preston starting feeding therapy so much that I was just avoiding writing about it. But here we are. We found out late last week that a spot for Preston had opened up early, so we are starting tomorrow. YIKES!! I am very glad to start this because that means we are closer to it being over, but these foreboding feelings are really starting to sink in today.

Tomorrow we will drop Luke off at preschool and then we have to be at Our Children's House (OCH) at 10am for his admit meeting. From my understanding, tomorrow will mostly consist of evaluating his eating skills and setting up his treatment plan for his stay in the hospital. We will meet with the admitting physician and then with a team of therapists (speech, psychologist, occupational, physical) who will be doing his evaluations.

The plan for the first 10 to 14 days is for us to leave him (like leave the hospital) in the morning, kind of like dropping him off at school, so that he can have his 4 to 5 feeding sessions and all of his therapy sessions during the day without the interruption of having to constantly tear him away from us, and then one of us will return by 6pm and spend the night. The therapists are all on very tight schedules and if they have to spend 10 or 15 of his 30 min session calming him down it wastes his valuable therapy time. At OCH they do their therapy one-on-one with the child, without the parents present. This is different from the ECI therapy Preston has most recently had. It was a little difficult when we did this last year during the day patient and out patient therapy at OCH, but for the most part I think he needs to be just one-on-one with the therapist - as long as they are patient and kind to Preston. Don't worry we can check up on them through a one-way window and we will.

So Randy and I understand their thinking. He is developmentally (like the age he functions at) on the edge as to whether or not us leaving him all day will be tolerable for him. If he just can not handle being away from us for so long, than I will be there with him during the day from the beginning. I really think he will be ok with it. He does really well when I drop him off at school on Mondays, and at the child center at Lifetime and at church. He is the one who will cry sometimes, but it never lasts more than 5 mins and he will always let whoever is watching him comfort him and distract him enough to get over his sadness pretty quickly. He has done this funny thing a couple times now. The Lifetime we go to is close to downtown and is in a tall building near Mockingbird station. A couple of time we have driven by on the service road and he must have seen the building and when we didn't turn in to go into the parking garage he started crying in his car seat. We finally figured out that it is because he wants to go play at the gym!! HE is always the one that never wants to leave!! So I hope at least the OT and PT will be fun for him and it will help him get through the crappy feeding sessions - because he will definitely cry through those.

The program director and I also discussed something on Friday that had been on our mind regarding this inpatient program. She mentioned that they might need to drop a feeding tube if he really drops off on his daily caloric intake because of not cooperating. Right now he knows that no matter what he will get his bottle and the is holding him back. To get him to move forward (assuming his evaluations say he has the skills to get off his bottle) they will withhold his bottle and try to progress his nutrition more towards a solid based nutrition. If he doesn't eat enough, he can not have the bottle as back up any longer and they would need to supplement his eating with tube feedings.

We knew this was possibility and a NG tube is something we are really against. An NG tube is a tube that is placed down your nose and into your stomach. Both the boys had these tubes when they were in the NICU, which is standard because they can not suck, swallow and breathe until they are at least 34 weeks and then they are weaned off as they get to full feedings by mouth. But the boys also had to have NG tubes when they were hospitalized in Dec. '08 for failure-to-thrive. Luke's didn't last a day - after repeated times of holding him down and shuffing it down his nose, 2x of him vomitting it up, and him repeatedly ripping it out I made them stop that day - he had it for a total of like 5 hours. Preston made it about 4 days - 1 off those days at home - and then we were done with it for him as well.

In my opinion it is totally barbaric - and I know this because I had a tube down my throat, very similar to an NG tube like this one, for 24 hours when I was a kid and it was incredibly painful. Within 10 hours it rubs your throat raw in the back and it is makes it painful to just swallow. I feel 100% confident that this took Preston's orally aversions over the top and I do not want to torture him again like that. Obviously they have to restrain a baby to get it in and the repeated "dropping the tube" among other things during that 2 week hospital visit seriously traumatized and scarred him. After that he stopped using his pacifier, would not let you put anything near his mouth - you could barely get to his face to wipe his nose. I fully understand that both my children needed them and honestly they probably still do. And I know that some babies/kids finally get over it and do ok on a NG tube for a long time, but there is another way - and to me it's a better option for babies/kids with oral aversions. It's called a g-tube and I basically begged for it that time when the boys were hospitalized back in '08, but they wouldn't do it. This tube is surgically placed in the stomach through your abdomen. And honestly when we see new therapists they are always shocked both the boys don't have one. It's a quick surgery, which he would have to be put under for, but not intubated (the way that causes his respiratory problems). It is a more long-term solution and in my opinion for any child that is under weight and is having any oral aversion issues why not just do that instead of torturing them with a feeding tube down their nose and back of their throat.

Randy and I actually had it out with two nurses and a resident at Children's that Dec in 2008. They were going to make us take Preston's NG tube out -the one we had finally gotten to stay in and was finally securely taped to his face (that's another reason they are so terrible - try keeping adhesives and a tube stuck to a drooling babies' face) before he could go home on the NG tube so that we could learn how to drop the tube ourselves. We basically told them they were crazy - why would we put our child through that again for no reason and that we wouldn't be putting it back in our selves anyways. We said we would wait on the home health nurse, so they finally let us go home without doing it after they sent everyone and their dog in to tell us we had to. They also said we were the only parents they had ever had that refused to comply. Seriously?? Let me just get on my soapbox for a minute, or take step higher because I might already be on it, and tell all of ya'll reading right now - doctors, nurses and especially hospitals and their policies do not always know what is best for your child and if you feel adamantly against what any of them are trying to do, educate yourself and then stand up for your child. My sister Stephanie told me something when we were having the great MRI debate with Preston's doctors around Dec this past year. She said "ya'll have to be Preston's quarterback - ya'll have to be the one who stands up for him and take charge of his care!" I think that is so true and it took me a while to learn that. Now I take all of Preston's medical care under advise, not as the law.

Sooo my famous question to them about the NG tube is always - "have you have shoved that tube down your nose and left it there for a while?" They always so no, just like the director did this past Friday when we were discussing it. She did say they put in g-tubes at OCH and if it comes to that we can discuss it. So obviously as you can tell from my ranting that this is a big deal to me and Randy, too. He is actually the one that says no way, never again and I have said maybe we could try and see if he does better this time, but the thought of holding him down and putting that tube down his nose makes me want to cry right now. Not because it is terribly painful putting it in, because it's not, it just feels weird, but because it is so scary to him - it literally is like torture to him. He is scared of things near his mouth, partly because of that dang tube. So this is a huge area we need prayers in - for all of us. I am praying that he moves forward with his eating and doesn't just depend on his bottle as a back up, so that we don't have to even worry about the stupid NG tube.

So that's where we are today. We are washing and packing up his clothes and it makes me cry every time I think about him not coming home for 4 to 6 weeks. I just pray that this works. We had a very long meeting with his pedi two weeks ago to discuss all things concerning Preston and in regards to his feeding therapy he was unsure as to whether this will get Preston eating up to his age level. He wants us to give this a try, but he set up the expectation that this may only get him up to eating a puff or something like that, that is very dissolvable. He said we may need to explore some of the out of state therapy hospitals if this does not bring a great improvement (I was afraid he would say we might need to do that). I am still going to pray and remain hopeful that he is more ready now and that he can surprise them all!!!

Luke will be able to come visit after 6pm and one of us will always be there with him at night. After the first 10 to 14 days one of us will start staying all day and sitting in on the feeding sessions, but not the therapy sessions. And they will slowly start integrating us into the feedings sessions. It is going to be a crazy month, but even if he is just eating a puff without vomiting that will be a huge thing for him. He is not able to self feed himself and I know he is starting to notice that that is different than his peers. So if he can take some puffs to school and eat puffs for lunch, at least he can sit with his peers and put "food" in his mouth and not feel different!!

Ok - that's all about the depressing feeding stuff. Over the last month the boys have done some fun things!! They actually watched their first movie - like sitting on the couch and actually watching it. It was....Cars!! We didn't actually watch it all in one setting because it got too late, but it was the cutest thing to see them sit on the couch and really watch the movie. Luke kept saying "Oh no, Oh no" when the cars where racing in the beginning and crashing. Luke looovvesss cars so we knew this would be the perfect first movie. This was a present from the Easter bunny! Our Easter was pretty low-key! My Mom was in Lubbock for my uncle's wedding, so we didn't really have much planned. We went to the arboretum on Saturday with Aunt Ashy and Josh. It was a beautiful day, so it was really crowded. But we found a spot to have a picnic and relax (we made Randy and Josh chase the boys ;-)) It was a lot of fun!

I took the boys this past Monday to College Station to stay with Aunt Ashy for a few days. After a minor bump in the road - I had to take Luke to an urgent care Tues morning because his ear drum burst Monday night late from an ear infection I didn't know he had. But he is such a tough little guy that by the time we got in to see the doctor Tuesday he was perfectly fine and so we had a fun trip to Brenham to go on the tour at the Blue Bell Creamery. It was neat and the boys were surprisingly cooperative and sat like good little boys in their stroller until the very end when Luke just had to start punching on Preston - 30 mins of being good was just too much to handle! ;-) Ashley and I enjoyed the free ice cream at the end and the boys decided they would rather run and play in the grassy area out front instead of eat ice cream so we got to eat theirs, too. We went to all my favorite places I like eat when I visit Aggieland!! That's always a highlight for me. I even splurged and got a Shippley's cinnamon twist donut on Tuesday morning when I got Luke some donut holes. Shippley's has the best donuts!! Luke is so skinny he could eat donuts all day and probably still not hit the growth chart, so I got him donut holes twice when we were there. He really loves donut holes! On Tuesday night we took the boys to the tennis court in Ashley's apartment complex to let them run out all their energy. Ashley said people let their dogs run around in there sometimes, so we figured it would be a good place to let the boys run around and be caged in, too - haha! We played with bubbles and that's what these pictures are of below. They both like to laugh at the bubbles, especially Preston. We had a crazy, but wonderful visit!! It was so nice to get away and get this feeding stuff off my mind for a bit before we are in it knee deep. I never thought when I first moved to College Station that I would say I miss it, but I do sometimes. People are so nice, warm and friendly there and it's fun to see all the Aggies making their way through college. Thanks for letting us come and helping me with the boys, Ash!

Well, I plan to keep everyone updated on the feeding stuff here and on facebook. I will try to post regularly, but if I don't just email me or FB me if you want an update. Thank you so much for the prayers, support and love! We appreciate it so much!

Love, Jennifer
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