Tuesday, January 6, 2009

Mother's instinct and bad timing

This post needs to be long. I have a lot to explain. But I don't have very much time, so I will try to be brief.

For the past couple of months (since after his heart surgery and since he's started solids), Benjamin has been spitting up. A lot. Especially when he has pressure put on his stomach, like during PT. Not right after he eats, but anytime. The doctor at first thought it was just reflux, but because Down syndrome babies are more prone to have digestional issues and because I, as the mommy, felt like something else was wrong, his pediatrician scheduled Benjamin for an upper GI this morning.

My cousins came over to watch Andrew and Benjamin and I drove down to Children's. Benjamin hadn't eaten since 4 a.m. and was hungry and tired. But SUCH a trooper. Basically, after hours of being there and having countless x-rays taken, it was determined that there is a weblike membrane covering his duodenum, which is the connecting tube between the stomach and the small intestine. Or something like that. So basically, the food cannot digest properly and hence the spitup. And hence the fact that he has only gained one ounce in a full month. According to the surgeon, this occurs in about 10% of Down syndrome babies.

This is evidently a pretty serious thing. The doctor who read the xrays today said that it was surprising that we were just now noticing this b/c they're usually there from birth. But we determined that we probably just didn't notice it until now b/c the solids made it worse. We're meeting with the surgeon tomorrow morning, and his surgery is this Friday morning. He'll probably be in the hospital three or four days. I'll know more tomorrow after we meet with the surgeon, but I think it's a pretty easy surgery. The reason it'll take awhile in the hospital is b/c he has to eat and poop normally before he can be discharged.

The "bad timing" part of this whole situation is that Matthew leaves Thursday morning for Disney and will be gone until late Monday night. Sigh. Thankfully, my parents are going to watch Andrew. It will be hard for me to have to be in the hospital without Matthew, especially b/c I'll have to pump (B's still nursing) four times a day. I'm not sure, but I think I should qualify for three meals a day b/c I'm still breastfeeding. If we had no family help or if the surgery were more serious, I'm sure Matthew would cancel his trip. But he's been training so hard for this marathon, and he'd be out quite a bit of money to boot. So even though he's torn, he's going. And I'm so glad. I would hate not to be strong enough to handle this on my own.

But anyway, there is the story for now. I will say that I know many of you will offer to help, and that those of you who are here in town will want to come do something. I am going to be perfectly frank b/c that's what I am. I think it might be easier if there were fewer people. Hospital visitors are sometimes more of a stressful situation than a help. I promise you that if we need anything, we will call friends. I'm not saying I don't want any help b/c I may need it, but please don't feel like I'm in horrible need. I'm sure we'll be fine.

Anyway, here are two cute pictures from our hospital trip today. Thanks for the prayers!!!!



18 comments:

Cheryl said...

It's good you followed your mommy instincts! I'll be praying for the surgery to go well.
Great pics. little Benjamin is so handsome!

Amber said...

Oh little Buddy. I'm so sorry you're going it alone, Angela. Wish I lived closer but you know I'm just a text away when you're pumping and bored :) Remember - that surgery is NOTHIN' after heart surgery! I'm glad you have great facilities around you for B! Will be praying for little man.

LeslieTummel said...

I'm off work Friday, and I know you have tons of help already. But, if you need anything (magazines, food, candy ;) please call! My cell # is on my facebook profile page. We'll be praying!

Branton Family said...

Totally stinks. I am so sorry for all of you. Your tough, and so is your little guy. Hang in there, and know you are in my prayers. Take care. Amy

Lisa said...

Oh Angela! My prayers and positive thoughts go out to you and Benjamin. It must be horrible to go through another surgery with him. Take advantage of offers of food, playdates for Andrew etc.

Good luck to Matthew in the marathon. I hope he is able to focus on his race ok. Maybe he can run miles 8,16 and 24 for Benjamin, 9,18 and 25 for Andrew and miles 10, 20 and 26 for you. That might get him through the tough miles.

hugs to you.

Stephanie said...

NO!!!!!!!!!!!!!!!!!!!!!!!!!!!!
We are here and ready to help. Tim is a little gimpy and a little grumpy but we can for sure entertain Andrew.
I am praying.
I am so glad these doctors know what they are doing and can help him feel better. I just wish he didn't have to have more surgery.
:(
Oh, girl. I am sorry. We will pray. I just love him so much. What a doll!!!! Can I come see you at the hospital?

JaybirdNWA said...

I'm sorry to hear that you all have been going through this but it is a good thing that you were attentive enough to get this checked. Hopefully this will correct the problem so he can gain weight. He looks so happy in this picture. We will be praying for you and your family during this time.

Anonymous said...

Angela,
We are praying for y'all. It sounds like a blessing that they can go ahead and do this so quickly. Please let us know if you need anything at all. Selena

Anonymous said...

thank heavens for mommy instincts! i'm glad they can get him in & taken care of so quickly. you'll be in my prayers.

Kristen said...

The picture of the 2 of you is priceless. Gorgeous shot! What a lucky boy Benjamin is to have you for a momma. I will be thinking of you, and sending prayers your way, from across the miles!

Unknown said...

Angela I know B is such a trooper. Is going to be tough as nails by the time he is two. You know I am always here if you need me. I just know when B gets this fixed he will be gaining weight like crazy. Just thank goodness for mother's instincts.

rickismom said...

Nice blog!
Good for you for letting your husband go...
and good luck with the surgery!!!!
-Mom of Ricki, who has DS, age 14 years.

Anonymous said...

Angela, you are an inspiration, truly. You are so strong even if you dont think you are, and apparently Benjamin has been blessed with the same kind of inner strength. I will be sending some positive vibes your way. Please keep us updated!

((((hugs))))
Tracey

Laurie said...

Im sorry to hear about the surgery...even if it's an "easy" one. I will be thinking of you guys!

Yikes, now Im worried. I was just at Dylan's pedi's office today for his 6 month check up. I brought up the spitting up issue with her bc Dylan's been doing it quite a bit since starting solids...hm...

Anonymous said...

I know you will likely update soon, but I am so glad to hear that the surgery is rescheduled and Matthew can be there with you. I know you could have handled it on your own, and with grace to boot. But, it is so much better to have Matthew there to keep you company. :)

Keep on keeping on Mr. Benjamin.

Anonymous said...

I will be praying for all of you!!! I will be out of town this weekend but i could help next week if needed...just let me know!!

Melissa C.

Kellye said...

I'll be praying Angela! So glad you followed your instincts! Further proof that Moms rock!!! Again, will be praying!!!!

Christia said...

Poor Benjamin! I will be praying for you and little B! I know his surgery will be perfect! HUGS!