Good News and Bad News on the GI Front January 24, 2008
Adam had his second endoscopy today. The plan was for the GI to go in with the scope and see if his pylorus looked the same as last time. If so, he would use the balloon to stretch it open some. There was a chance that it was spasming last time, but the GI didn’t think that was the case.
Sure enough, the pylorus was still so small that the scope couldn’t fit through. The GI stretched it with the balloon from 8mm to 12mm as it can only be stretched so much at once safely. The opening is still small for someone Adam’s age, so he may need the procedure repeated down the line, but only time will tell.
Once the GI dilated the pylorus he was able to get into the duodenum unlike last time, so he went ahead and took biopsies there. We should get those results early next week.
So, that’s the good news. We’re very glad things went so well. Adam had a tough time in recovery again this time but was given some Morphine which helped a lot.
Now onto the not so good news. Adam is having a bad GI reaction to the Prevnar and/or Varicella vaccinations he got at his 12 month check up two weeks ago. This is beyond frustrating to us. The GI said that Adam’s intestine looked inflamed which is no surprise given what’s been going on.
So, even though his pylorus has now been opened up some we’re still on hold on the solid food front at least temporarily. We need to wait until things settle down with his little system, and the GI wants us to wait until we get the biopsy results back as well. We’re hoping so much that things improve soon and that those biopsies come back normal, so we can keep moving forward.
A New Addition to the Family January 20, 2008
Oh, don’t worry. There will be no surprise pregnancy announcements on this blog. Last time I checked you need sperm and eggs for that, and given the whole azoospermia thing plus the fact that I haven’t ovulated since before Adam’s FET there’s no chance of that happening around here.
No, I’m referring to our new furry member of the family. His name is Winston, and he’s a 6.5 month old sweetie. He’s only been here 24 hours, but he’s quickly making himself at home.
I’d almost forgotten what it’s like to have a young cat around. He’s got a ton of energy and is already showing off his personality.
Salvador isn’t exactly happy that he’s got a new brother, but I know that he’ll come around soon. It actually hasn’t been that bad. Salvador’s shared a few words with Winston, but there has been no fighting or slapping. Earlier today Salvador was following Winston’s every move. I have a feeling they’ll be playmates soon enough.
I’m really impressed with how quickly Winston is acclimating. He’s explored the house top to bottom already and has staked out a favorite spot behind the big TV in the living room. He’s a very friendly and sweet cat and is good with Adam. Adam has already grabbed a handful of fur petted Winston, and Winston didn’t bat an eye. I think he’s going to fit in quite nicely.
So That’s What a Regular Ultrasound Looks Like January 17, 2008
I had way too many encounters with the dildocam during my IVF days and had what was probably more than my fair share of ultrasounds while pregnant with Adam, but I’d never had or even seen a non reproductive related ultrasound until today.
Adam’s GI wanted him to have an ultrasound done before his second endoscopy, so we headed off this morning to have that done. Unfortunately, we didn’t really learn anything new. The ultrasound tech really couldn’t get a good look at the pylorus given Adam’s size. He did, however, take measurements and pictures of Adam’s other organs, so I guess we should hear about that if anything happens to turn up amiss.
I wish I could have gotten a better view of his tiny little organs, but I had to hold down his arms and attempt to comfort him while he cried through the whole thing. Poor guy. His second endoscopy has been scheduled for a week from today, the 24th, so now we’re just waiting impatiently for that to roll around.
One Year Ago Today January 10, 2008
The morning of January 10, 2007 we headed to the hospital so that I could be induced. Later that night our little man, Adam Daniel, entered this world and stole our hearts. I can hardly believe that my baby is a year old. I guess he’s not much of a baby anymore.
We went through so much to bring this little guy into our lives, and it was worth it a million times over. I know there’s no way for him to understand that it’s his birthday, but the meaning of this day is not lost on me at all. It’s a day for me to reflect upon not only the last year but all the years prior that we spent trying to have him.
My MIL sent us On the Night You Were Born, and I couldn’t hold back the tears as I read Adam the first page.
On the night you were born,
the moon smiled with such wonder
that the stars peeked in to see you
and the night wind whispered,
“Life will never be the same.”Because there had never been anyone like you…
ever in the world.
Happy Birthday, my special little guy. I love you!
Breathing a Sigh of Relief January 9, 2008
Adam’s GI called this evening with his biopsy results. They came back normal, no signs of eosinophils, so we can finally exhale. An eosinophilic disorder diagnosis was the one I was fearing the most, and I am so relieved that he doesn’t have that. Now we don’t have to worry about forcing him to wean to Neocate or any of the other things that go along with that diagnosis.
The GI wants Adam to have an ultrasound done before the next endoscopy, so his nurse will be calling tomorrow with scheduling info for that. We should be able to have that done pretty soon, and then the endoscopy will likely be scheduled for next week sometime.
He said that one endoscopy with the balloon may not be enough, that often a second one will be needed. Also, there’s a small chance that the pylorus may have been spasming during the first endoscopy, and the opening could look larger the next time he looks in there. We’ll cross those bridges if and when we come to them. Right now we’re just focusing on getting through the ultrasound and next endoscopy.
Good News from the Upper GI January 4, 2008
Once again Adam was a little trooper for his upper GI this morning. Thankfully it wasn’t a lengthy procedure. We were in the waiting room far longer than in the x-ray room.
Adam doesn’t think Barium is all that great, but the nurse got it in by syringe after he just cried harder when she tried to make him take it from a bottle. I guess she didn’t believe me when I told her that there’s no way he was going to take anything from a bottle.
And can I just say that I think it’s a sad reflection on the state of breastfeeding in this country when upon being told that Adam doesn’t take bottles the nurse asked, “Well then how does he eat?” We got a similar question before I fed Adam in the recovery room after his endoscopy. It’s like it’s not even an option for him to be breastfed at his age. I guess it must seem really odd that he’s still exclusively breastfed. Ok, I’m done with my tangent. Back to the post.
The radiologist didn’t see any blockages or other structural problems that would prevent the GI from going in with a balloon to try to open things up some, so that was good news. I talked to the GI this evening, and he said that he’s going to run Adam’s case by some colleagues early next week, and that we’ll probably be looking at another endoscopy so he can go in there with a balloon. I asked if that would be happening next week, but apparently it’s really hard to schedule and anesthesiologist, so we might have to wait longer.
He said he’d get back in touch with me probably on Tuesday after he talks with the other doctors and gets the biopsy results back. Until then we wait.
That Explains That January 3, 2008
We finally got some real answers from today’s endoscopy. They weren’t answers I was expecting but answers nonetheless.
While Adam was recovering from the anesthesia his doctor went over what he saw with us. He walked us through the digestive tract, saying that his esophagus looked healthy as well as his stomach. Then we found out the real finding. He said that the opening from Adam’s stomach to small intestine is very, very small. So small, in fact, that the GI couldn’t even fit his 9mm diameter scope through it. So, that explains why Adam’s been able to tolerate breastmilk but not solid food.
The GI also took biopsies of various areas to check for an eosinophilic disorder. We’re hoping that the structural issue is the only one we’re dealing with, but we’ll find out for sure when we get the results back early next week.
So, the next step is for Adam to have an upper GI series done so the doctor can see exactly what’s going on in there. I just got a call about that, and we’re having it done tomorrow morning.
Then based on the upper GI results the doctor will be able to tell if the opening from the stomach to small intestine can be opened with a balloon or whether it will have to be surgically opened. We still have a couple of procedures ahead of us, but at least we now know what the problem is.
Adam’s protein intolerances appear to be a separate issue, but as long as my elimination diet keeps doing the trick he should be able to keep breastfeeding as long as the biopsies come back ok. Such a relief.
Adam was a total trooper as usual today. He woke up very cranky from the anesthesia and has a sore throat now, but he’s hanging in there. I’m sure he’ll be back to his old self in no time.
I can’t help but feel guilty that we didn’t find this stuff out earlier. I know that I don’t possess a crystal ball, but I would love to have spared him some of that pain. I’m glad we have a plan to move forward now, though. Plans are very good things indeed.
The Truth January 1, 2008
I’m not big on resolutions, so instead I thought that for my first post of the new year instead of writing another standard update type of post I’d actually sit down and really blog the truth. So, here goes. This is the reality behind the updates.
I’m scared. Adam has his endoscopy on Thursday, and I’m terrified of the results. It may be an oversimplification, but the way I see it things can go one of two ways. Either we find out that whatever is going on is treatable by meds and we continue on with breastfeeding or we find out that Adam has something in the nature of a eosinophilic disorder and we’re forced to wean to Neocate and our world gets flipped upside down.
I’m heartbroken by even the thought of weaning him right now especially in an abrupt manner. It goes against every parenting philosophy I hold dear. I know I started out hating breastfeeding, but now the opposite is true. And to think of forcing him to give up something that is so much more than a mode of nutrition is too much. It may not come to that, and oh I hope it doesn’t, but I do know that it’s a possibility. I have to admit that I’ve shed tears just thinking about the chance that it could go that way.
I really am so overwhelmed right now by so many things. Parenting Adam is so much harder than I ever imagined it would be. I’m not complaining, truly I’m not, because it’s also so much more rewarding than I thought it would be. It’s just hard sometimes.
I’m tired. I haven’t slept more than a three hour stretch in over 6 months and those stretches are few and far between these days. A good night means getting up only four times to nurse Adam back to sleep, a bad night is six or seven. I don’t blame him one bit, because when Adam wakes up it’s either because he’s hungry or hurting and between the tummy, reflux, and constant teething he’s got more than his fair share of hurt. It’s just that we’ve been having more bad nights than good recently, and my body can only adjust so much.
And this diet can be quite depressing sometimes. It is so worth it. So worth it! But it’s not easy. I figured out why it’s harder than a diet you go on to lose weight (besides the obvious fact that there’s not a whole lot I can eat). The difference is that I can’t cheat. Everyone cheats on a diet. Heck, even a lot of diet plans have cheating built in. I can’t do it to him, though. I won’t.
I had to bring my own food for Thanksgiving dinner. There was no candy in my stocking this year. I haven’t been out to eat since before Adam was born. It’s been almost 11 months since I had any form of dairy and 6.5 since I had any soy, eggs, wheat, nuts, seafood, beef, or turkey. I lost chicken a little ways back, so it’s pork at every meal. On the flip side, though, as hard as it is, I wouldn’t hesitate to continue on if it means I don’t have to wean Adam. I’ve got a lifetime to eat whatever I want. I can do this for now.
What’s harder for me than my diet is Adam’s diet. “So, what stage food is your baby eating now?” Um, that would be none. I hate so much that his sensitive little system has yet to be able to tolerate solid foods. He’s almost a year old now, and I’m really worried about what’s to come in that department. It can be overwhelming to be his sole source of nutrition at this age, but I’m so thankful that I’ve been able to do it for him.
So, that’s where I am right now, scared, tired, and overwhelmed. I don’t know if things will look better or worse after Thursday. Dan’s always telling me that things will get easier. I guess that’s how we make it through the tough times, thinking about the fact that there will be easier times ahead. I just want Adam to be ok. I want things to get better for him. The rest will work itself out.