Sunday, April 5, 2009

And then there was glue...


(Okay, so I have to post old pictures since the camera is having techincal difficulties...so frustrating!)

Ah, week twenty-three...how quickly all the weeks seem to fly by. However, I'll be honest...this week has been a little tougher than some of the other weeks. We love our little guy so much. He is so sweet and normally, always has a smile for everyone. He is such a flirt and loves attention (first born...big shock). He loves to be loved and it is not picky on where it comes from as long as someone is loving him. We are reminded everyday how incredibly blessed we are...God is so good!


So, I really thought this post was going to go in another direction. He started off his week with a lot of promise. We felt his feedings were going so much better...he was taking three to four ounces for a first feeding (albeit a vomit session here and there). Yes, I was force feeding him (I know you all think this must be so terrible, but really it wasn't - he doesn't cry at all, I just place (not force...hmmm) the bottle in his mouth when he smiles (I know...mean) and I hold his arms down (he is constantly trying to bat the bottle away)). So, yes it is force feeding; however, I am a mother and I need to feed my son. I have realized in my five months of parenting that I will not judge other parents (when they do things that I would consider "odd") because you never know their circumstances. Anyway, things were going well...we were trying to figure out if he was getting better due to the dairy-free diet (so sad for me) or the Prevacid (new anti-acid drug). So, we went to PCH on Friday for the barium swallow test - Hugh was smiling and Jake was scared. It is weird being at PCH - when I am there I feel like I shouldn't be there...I think, "This is a place for sick kids...not for Hugh." However, it is a great hospital and we are thankful to be able to go to it. Also, we can now pray for the little ones at PCH. So...the test...it went well (Jake was fine). They all loved Hugh since he was hamming it up with lots of smiles. He didn't mind drinking the barium at all (hmmm...maybe I should feed him barium). We liked the speech pathologist a lot. So...the results...he is aspirating. Basically, the milk is going down the wrong tube...so, going to the airway, which leads to his lungs. The crazy thing is, he has NEVER had any respiratory problems. So, it was very surprising that this was happening and we praise God that he has been so healthy. They explained to us that formula and breast milk are too thin and he needs to be on a consistency called "Honey" or glue (as we like to call it) because he doesn't aspirate at the thicker level. Also, no more force feeding...we have to make a pleasant eating environment (whatever that is) for Hugh (to avoid years of therapy). So, we have to add these gels to his milk. We are supposed to add one ounce of gel to every four ounces of milk - this is the honey recipe...there are other recipes like pudding and nectar, but we won't go there. They explained that he is underdeveloped, but he should grow out of this in the next three months. We asked about the reflux...they don't know if he has reflux since reflux is secondary to this issue; however, we need to continue to treat him for reflux until the GI doctor tells us to stop. So, I walk out of the appointment a little overwhelmed...I have a million questions, but they didn't come to me until we walked out (Jake, however, is doing fine with everything...thank goodness for one sane parent). We get home and get ready to make the "recipe"...thinking that finally everything has been solved - he'll drink his new recipe and this will all be a distant memory. Ha! Seriously, we make his glue...seriously...it looks like glue and we give it to him and we get the, "Are you totally crazy? I am never going to drink that." stare. He wanted nothing to do with the glue and he was hungry. So, since Jake and I have extensive medical backgrounds, we made the decision to go back to his regular milk. He will drink that milk and he has been fine...not sure what aspiration is, but can it be that serious?!? So, we give him his regular milk, which he drinks and goes to sleep (he was so hungry). We place a call into the speech pathologist, who explains to us that regular milk is ABSOLUTELY not an option any longer. She explained that we all know the problem now and we need to treat the problem. So, she said thick liquids or a feeding tube. Well, at that point, I had a panic attack...I just became too overwhelmed to process anything. It only lasted a few minutes...Jake brought me back down. She did allow for us to make the honey a little less honey and a little more nectar (I know...confusing). So, we are working on it and he is taking it (about twenty ounces per day). We'll need to find out from the GI doctor on Monday whether or not that is good enough...if not, he will be placed on a nasogastric (NG) tube for three months. We are going to rerun the test in three months. The feeding tube being on the horizon has really freaked me out and I praise God for so many people that have brought me back down. It really wouldn't be too bad, and if he needs it, he needs it. Obviously, our concern through all of this is we don't want him to get dehydrated from not eating enough (he even has to drink water thickened) and we don't want him to get pneumonia or some other respiratory problem (from the aspiration). So, we wait and trust in the Lord. I have really struggled these past few days, but I know God is still good and we place our hope and trust in Him - however, it doesn't make it any easier (which of course is what I want). We rest in the truth of His word, "Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." (Lamentations 3:22-23)


So, what was new this week? Well, besides the glue...we had a wonderful week. He is getting much more vocal and is really trying to sit up (with some falls). We have realized Hugh is a simple guy and loves himself a spatula and a plastic bag to play with (kicking it with his feet...not sucking on it...he was always being monitored)...endless entertainment. We love how he clings (like a monkey) now when you hold him...so cute. He got to meet his new cousin, Evie...she is so cute! We know that many fun days are ahead of us with the cousins. He got to spend time with his GG (great grandmother) and had a wonderful time...lots of smiles and giggles. We had some lunch dates with friends and even a trip back to my work...he, of course, was a big hit. So, overall...fun week (however, if it weren't for his feeding issues...I wouldn't have much to blog about...hmmm, I would be okay with that).

We thank you all for your prayers and ask that you continue to lift Hugh up in your prayers. We would like to avoid the feeding tube if at all possible. We praise God for our little guy - we are so blessed!

(Oh, by the way...I am back to dairy this week. Me and the Cap'n are going to go sailing.)

8 comments:

Amy said...

Praying for that honey bear...

Jason and Lisa said...

Praying for you guys.

I have to laugh about the "love me some phrases." It must be a family thing as I've noticed Melissa does that too. :)

AprilJ said...

We can't wait to see you guys in a few weeks. Thankful for some answers this week with the tests and all. You can do like I have been doing and adopt the AA philosphy: one day at a time. Sometimes it helps, sometimes it doesn't :) ((((hugs)))) Oh, and congrats on getting back together with Cap'n.

Brooke said...

We love you guys! Praying every day for health, wisdom and comfort. Lam. 3:24 & Ps. 94:19 :)

Amberlee said...

We are praying for you all...sometimes it is so tough being the mommy and daddy. You guys are doing great, and Hugh is a joy...I just wish he would come around more to brighten our day over here! :) Hang in there!

Brandie said...

What a week! Sending you lots of prayers for getting that glue down. Both of my girls were big monkeys at this age...I figured out how to do just about everything with them on one hip having one free hand. Moms are amazing people --- you are doing a great job. Know it! Believe it!

MommySecrets said...

Ugh - your journey reminds me so much of our helmet journey with B's plagiocephaly. It was so frightening to think about the 'what-ifs' and so overwhelming to try to understand procedures. We will pray for your wisdom and peace, as well as praying for our cutest nephew in the whole world to eat the amount he needs to eat. Thanks for sharing so vulnerably with us.
ann

Mindy said...

I will be praying for that the feeding tube is not necessary. Have good week!