The bright side

Since switching Joseph to the special formula, we have noticed such amazing improvements in him! He isn't in pain when he eats, his food is actually digesting, he's pooping more normally and more frequently, his breath isn't fermented anymore, and overall he seems to be more comfortable. Seeing how well he's doing has made giving up breastfeeding a little easier. I still miss it and how convienent and inexpensive it was! No bottles to deal with, no formula to buy, no washing before and after feeding. I used to just be able to pull him into bed with me at night and when we went out during the day, I never had to worry about having bottles and water and formula - such a pain! But my son seems so much better and it puts everything into perspective when that is my focus. He is slowly starting to gain weight again. We had a weight check and he gained 7oz in 2 weeks. He's up to 16lbs 9oz! His follow-up with the GI specialist is January 11th. Hopefully we'll find out about starting solids with him. He also has his follow-up hearing test. He failed the last one and has fluid in his left ear. They want to check him again next month and I'm really hoping he's better because he does not need to have another surgery. But I've come to learn that if the end result is better than how you start, the process must be worth it - look at where we started with Joseph, all we've been through, and where he is today!

I swear my son is the happiest baby I have ever seen! We are so BLESSED to share the gift of his life!!

Another Miracle!

God has graced us with another Miracle! It would appear that our miscarriage we experienced was actually the loss of a twin and one baby survived! They found a heartbeat yesterday! I know there is this special baby up in Heaven named Avery who passed away from gastroschisis complications and his Mommy founded the Gastroschisis support group Avery's Angel's. This support group was a Godsend for what we've been through with Joseph. We named the twin we lost Jordan Avery after this amazing little boy. My due date is July 30, the anniversary of the day Avery earned his wings!

Letting go

Joseph's stool sample analysis came back today and it was not at all what I expected. His stool had blood and white blood cells in it, as well as evidence of severe malabsorption. Basically his intestines are so irritated and inflamed that they are bleeding and his body is not absorbing nutrients which explains the halt in his weight gain. The GI specialist said that at his age, she thinks this irritation is from allergies, where his immune system is attacking everything he eats and his poor intestines are caught in the middle. Because of the gastroschisis and motility issues, he is very predisposed to food allergies. His GI specialist wants me to stop breastfeeding him and switch him to a special pre-digested formula to see if this helps him. She wants to try this before moving on to more invasive tests like an endoscopy and colonoscopy (camera down his throat and up his bum) where he would have to be put under general anesthesia.

I have worked so hard to be able to breastfeed my child and now that is being taken away. For the whole time he was in the hospital, I was unable to nurse him, and I worked my butt of around the clock to establish and maintain my milk supply. When Joseph could finally nurse, we had such a difficult and painful time learning because of how long he was on the vent and all the oral trauma he sustained. But we stuck with it and were eventually successful. It has become his one and only comfort - he doesn't have a special blanket, he won't take a pacifier, he is a boob baby! And now I am having to take away his only comfort and it's breaking my heart all over again. He was looking at me this evening, crying, wondering why I was doing this to him. It's ripping me apart. I'm trying to convince myself that I'm doing this for his own good and I'm trying to do what is best for him. Neither of us are ready to stop breastfeeding and this loss is going to take a toll on both of us. This morning, I had no idea that I would be nursing my son for the last time and I just want that moment back more than anything else right now.

Alphabet Plans

If at first you don't succeed, try, try again. I am often grateful that we have so many letters to fail with. It's encouraging that if Plan A doesn't work, you can move on to Plan B, C, etc. This seems to be all we have to go on with Joseph right now.

Joseph had his appointment with the GI specialist and unfortunately his intestines are getting worse. The upper GI and small bowel follow through study showed that they're still dilated. When he was trying to pass all the contrast he had to drink for this study, his intestines didn't function to move it all the way through, and it sat there inside of him long enough to cement and he really struggled with this. I had to lube up his bum so he could get the rocks out. His infection didn't respond to the first round of antibiotics and his breath is smelling more and more fermented. His gas is becoming so foul-smelling that I struggle not to gag! And, his reflux is getting worse, sometimes it's liquid, sometimes like cottage cheese, and sometimes a big blob of mucus. His stools are also very liquid and mucusy. To top it all off, he's lost about half a pound in the past month. So, Plan B involves stopping his reflux medication [which could be contributing to the SBBO (small bowel bacterial overgrowth)], getting a stool sample for cultures, switching him to a milti-strain probiotic, and trying a round of a different kind of antibiotic. If this doesn't work, the GI wants to consider a colonoscopy and endoscopy (a camera up his butt and down his throat) to see the extent of the irritation and inflamation.

Trying to get a stool sample from a 7 month old became one of those things you should only see in movies. Plan A was to take one of my plastic breast milk storage bags, cut off the top, and generously tape it to his bottom, then place the whole contraption in a diaper 1 size to big for him. Let me just say, the poop went everywhere BUT the bag. For Plan B, I wrapped his whole bottom in Saran wrap with an area open for his pee, and then put a diaper over the whole contraption. And he didn't poop. Plan C: q-tip with surgi lube - gentle rectal stimulation with a cup in the other hand to catch anything that came out. Believe it or not, it worked like a charm!

Joseph is on day 5 of the new antibiotic and I still haven't noticed improvement. One thing that the GI suggested was adding a scoup of formula to his bottle to increase the calories in it, that way he won't keep loosing weight. I tried this and he threw the whole thing up and got a bellyache. He seems to be the hungriest at night and has been waking up every couple hours wanting to nurse. It's really making for some long days (and nights).