Caleb and his "big boy bed"

Happy Wednesday! Just wanted to share a couple pics of Caleb taking a nap in his crib. :) Just seems so surreal to have him home and in his "real" bed. He had SO many different cribs at the hospital...it is nice to see him sleeping in his own bed today!! Here's hoping he will start sleeping through the night soon and the reflux will subside enough so he can enjoy many more restful hours like this...

Week 11...and week 12 :)

Ah, week 11 (last week)...what do you have in store for us? Well, at least there is a beautiful, whole-mouth smile tucked away in there. Brings much joy to your mamma to see you smiling more these days!!

Another weight check - up one ounce in one week. :(

Cardiologist appt - he says you are still looking good! :) He put your stats on the actual Down Syndrome height/weight chart and you are 75th percentile! Nice to know our pediatrician office says there IS a growth chart for Downs children, but is not using it. Argh!

Eating - well that has become MUCH better the last few days!! Something just seems to have clicked and you are drinking more and more of your bottles, good to the last drop! We are still only on about 75 mls, but you are certainly drinking more and more of them all gone. It is such a welcome sight!! Funny that your older brother and sister cheer for you when you finish a bottle...guess we have been living bottle to bottle too closely around here. :)

Week 12 - you snuck up on me! Today was another weight check at the pediatrician office. Thankfully your new eating habits have become obvious!! You gained 5 ounces in the last week - up to 10 lbs. 7 ounces!! YEEEE HAW!! With this new eating pattern during the day (barely making it 3 hours till next feeding), you are able to go a good 5-6 hour stretch at night. Now if only daddy and I were ready for bed at the moment you go to sleep...guess we better work on that so we can get at least 5 hours too...

Here's hoping your new found love of eating is here to stay! It is a very welcome sight in this mamma's eyes!! The throwing up has not been as bad, I assume thanks to the Nutramigen formula, but you do still throw up some...usually during a bottle, so that tells me you are just full of air thanks to how quickly you are trying to drink them now. It is amazing how quickly we went from trying to feed you every 3 1/2 hours to you now wanting a bottle every 3 hours or sooner.

Not too much going on this week. We just have a meeting with the County Early Intervention ladies to see what plan of action they have for you...OT, PT, speech?? Wonder what all it will be...

Thank you all for your prayers and support!

Week 10...

Alright, let's see if I can get an update posted today...hmmm...just one goal today...let's see how far I get... :)

Week 10 - It is hard to believe that Caleb is already 10 weeks old, yet on another hand, it is hard to believe that it has only been 10 weeks! With all that he has been through already in his little life and how much we have all been through with his daily care, we are thankful to have made it this far. Hopefully it just gets easier from here!

Our biggest milestone the past few days...the NG tube is G.O.N.E.!!!!! We got to a point where we were not using it as it seemed to make him throw up before a feeding was even complete...it was just overflowing him. So on Saturday, I pulled it! Yes, the pediatrician was fully aware of it, they were the ones last week at his 2 month check up that suggested it. Caleb then decided to go on somewhat of a hunger strike after it was gone. Talk about confusing. Here we thought we were helping him but getting rid of the thing and that drinking his bottles would be SO much easier and more comfortable for him, but no...not Caleb. He decided he was done with his bottles after only taking about half. He has started to drink more the last 24 hours, so here's hoping he is truly "self' regulating" at this point. I took him back yesterday to have his weight re-checked and UGH! He was down two ounces from last week. The pediatrician was not concerned though, so that was a relief. I was so worried they would put the feeding tube back in, not that we were using it though, so it was a very odd situation. Pediatrician really feels with all the changes he has been through lately, he will get it soon enough. Please pray that Caleb will begin to drink all of his bottles (he is still only on 80 mls), so we can start to see some good weight gains. He did pretty good yesterday, drinking at least 2/3 of the bottle, but he also spit up more as well. So hopefully his stomach will start to get comfortable with him doing this all on his own now. We also changed his formula to the hypoallergenic "Nutramigen" to see if it helps him to be more comfortable during a feeding and afterwards. So far it does seem to help, but it is really early to notice any major difference in him. I was surprised he drinks it! The stuff smells awful.

Thank you for keeping up with us along this wild ride. We could really use some extra hours of sleep at night, but hopefully those will come soon enough as he starts to get the hang of drinking more each bottle and being more comfortable going longer periods at night. I feel like I go about this house as a zombie most days.

YEA! I did it...I completed a task today! he he

I love you mommy!

Hi Mommy,
I know I can't do a whole lot on my own right now, but I wanted to find a way to let you know how grateful I am that you are taking care of me. You don't fully understand what is going on inside of me which is very frustrating. I don't cooperate all the time, but it will get better. I really enjoy the time that you spend with me. I can tell that you really love me and want the best for me. I am looking forward to the time that I can fully show you how grateful I am that you are my mom. Thank you for not giving up on me. I love you, mommy.
--Caleb

P.S. I love all the pics. I really am a cutie. :)

Two-month check-up

Just a quick update about Caleb's two-month check-up today...
He weighed in at 10 lbs. 3 oz. Which I thought was going to be a good weight gain, but it was only 1 lb. more then when he was there last month. :( He dropped from the 35th percentile to the 18th! He grew a little over an inch, but again, not as much as they typically see after one month time. Oh well, I see it as a gain, I was thrilled to see him hit 10 lbs. :)

We discussed Caleb's feeding issues with the nurse practitioner at length and basically came to the conclusion that we just need to feed him what he will take, when he will take it. Instead of trying to force a certain amount in every feeding, we are just going to let him drink what he wants and see if he will "self-regulate" over time. I will take him back next Monday to make sure he is still gaining weight and not losing with this new feeding approach. She actually also mentioned taking the tube out for a few days to see how he does, whether it helps his feedings. I am quite nervous about that as he is on 4 medicines that go in much easier by tube vs. mouth! We will see how these feedings go before we decide whether taking the tube out is worth it possibly having to go back in if this new plan doesn't work.

We appreciate your prayers as we are trying to be hopeful that this new feeding pattern will help Caleb gain weight and be able to self-regulate enough to drink all of his bottles, so that the NG tube can go for good. We certainly believe that the tube running down his throat is not helping the drinking comfort level as well as being a nuisance to his reflux issue.

Thanks so much!!

Another day...

I am sorry if my venting yesterday caused any panic or concern for you. Caleb's feedings or lack there of, are stressful, but nothing that will not pass. I am trying to remind myself of this each time we sit down to a bottle. I have basically decided to not 'force' anything extra into him, that when he is done drinking the bottle, he is done. That way, hopefully, what he drinks is comfortable for him and that is all we can do for now. He has his two month check up tomorrow with the pediatrician and you know full well we will be discussing all this in great length. I am also hoping that the pediatrician can get him in to a closer GI doctor a little sooner. Granted, next Tues. is probably pretty good for a pediatric GI doctor, but it is far from the house. The office that is close to our house could not see him until mid-November! That just wouldn't do, so we had to take the one further away that had an earlier appt. So I hope the Dr. tomorrow can pull some strings and get us in to the local office sooner...we shall see.

Thank you all so much for your prayers and support. I know I am not the only mother who has ever dealt with reflux, but it sure isn't fun! Esp. on top of Caleb's other health issues. I am watching for signs of dehydration and thankfully he is not showing any signs of it so far. I will certainly let you know how the appt. goes tomorrow...hopefully Caleb has gained a little weight since we were there a month ago. His reflux is not every bottle thank goodness, although he is drinking little bits at a time, but I guess that is better then pushing too much and half of it comes back up! I guess I need to start counting every little blessing I can find. :)

Why? Why? Why does this have to be SO hard?

I have asked John that question many times in the last week. I have been completely overwhelmed lately. Caleb's care and feedings require me to stay home most all day, every day and it feels like it is never ending. Just when I feel like I can get to a place to rest my very weary head, he wakes up! You just never know how he is going to be from one minute to the next, whether he is going to throw up all over the place, etc. So I am really not sure how much of Caleb's daily care is stress or just completely overwhelming me. Not to mention the couple 2-3 hour naps I get each night certainly do not help. The last couple days I have felt lousy, just completely exhausted and I know it is because I am not taking care of myself. I do not get to rest at all in the day because if Caleb is actually asleep then I try to spend time with Sara or help Ryan with homework. Not to mention the dishes, laundry, etc. :) Needless to say, I feel completely inadequate as a wife and mother to Ryan and Sara these days!!

Caleb's feedings the last week have gone from bad to worse. We tried to increase his volume a little bit and it completely backfired on us. It aggravated his reflux to the point that now he is hardly taking 80 mls without issue. Most days at least one feeding comes back up. Caleb is not fed like most newborns where he eats until he is full. He does not have enough endurance from his heart conditions to do that. So some bottles he can drink a good bit (2/3), and some bottles he barely drinks any at all. We have tried giving up on the fact that he needs to eat every 3 hours as we were instructed. He was certainly never hungry enough to eat that often, so we have tried to space it out to 3.5 hours and sometimes he is hungry enough to drink a good bit and then the next feeding he won't hardly drink at all. He is not gaining weight like he should, so this just compounds the stress for me! He does not have the endurance to drink a whole bottle, so that is why we were put on a strict schedule to feed him 24/7. We have slowly increased the amount and tried to spread it out over more time so that he is actually hungry for the next feeding, but most of the time, he could still care less about eating. We are up at night putting his milk/formula into his feeding machine, just to try and spare him a few calories being spent by drinking it from the bottle. So he probably would sleep a really good stretch for us at night, but we do not have the luxury to enjoy it...he needs the feeding, no matter what.

Just today, Caleb is basically throwing up anything that I try to 'push' through his NG tube. I give him about a half hour to drink what he can/wants from the bottle and then we are suppose to push the rest by machine or syringe. Today, anything extra I have tried to push just comes right back up. Couple people have wondered if it is a milk allergy, but he does not seem to be all that uncomfortable. He just literally overflows. He is not really cranky or anything like that. He just overflows and that is it. I would assume if it was a milk allergy then he would be much more miserable??

I am sorry to vent my frustrations here on the blog, but we just really need some prayer as we seek extra doctors advice as to what is going on. Just when I thought we were free of one doctor (the surgeon), and those extra appts...now we have a new one! He has his two-month check up on Wednesday and it will be interesting to learn his weight. Here's hoping he has at least gained a little bit. We have looked into taking him to a GI doctor and have an appt. with them next week. Here's hoping they can help us figure out what is going on and why he is throwing up so often anymore. He never had this problem at the hospital, so it is frustrating to feel that he has gone downhill, so to speak, since he has been home. He was up to taking 90 mls from the bottle and now we struggle to get 80 to stay down. Today we are not even close to getting 80 mls to stay in. And he is suppose to be taking 600 mls in a day! We are not even close!

Hopefully I can post some good and uplifting news soon...sorry again for laying all the frustration out here on the blog.
Joanna