new granddaughter

Gloria · Post by **Gloria** » Tue Mar 06, 2012 11:24 pm

Great news, Martha!

Gloria

Post by **tex** » Wed Mar 07, 2012 8:33 am

That's surely a good omen, so hopefully everything will go smoothy and she'll do well.

Love,
Tex

Martha · Post by **Martha** » Mon Mar 12, 2012 8:52 pm

Abby started at the feeding clinic on Thursday. They were a bit stymied because they wanted to do a swallow study, and Abby refused to swallow anything. But today she drank 2.5 ounces of milk, and ate a bowl of cereal mixed with breast milk, her first solid food. If she continues to drink from a bottle, they plan to do the swallow study on Wednesday. Hopefully the doctors will soon figure out what is wrong, and help her be able to swallow.

We visited on Sunday, and it was nice to see the facility. We all went down to the playroom, and there were lots of kids there. Abby was more interested in watching the people than in playing with any toys.

Love,
Martha

Gloria · Post by **Gloria** » Mon Mar 12, 2012 10:49 pm

Things are looking up! I hope she continues to eat some solid foods.

Gloria

starfire · Post by **starfire** » Tue Mar 13, 2012 10:23 am

Really glad you've had some good news.

Love, Shirley

Martha · Post by **Martha** » Thu Mar 29, 2012 7:43 am

Abigail came home from the hospital feeding clinic this past Friday, after 2 weeks. Unfortunately, they were unsuccessful in getting her off the feeding tube. She simply will not swallow thin liquids. The doctors said that the problem is not weak muscles or poor sucking (things they can help with) but poor coordination of sucking, swallowing, and breathing. She aspirates some into her lungs when she drinks, and now she doesn't want to do that any more.

She will eat baby food, and will take thickened milk from a cup, but nothing from the breast or bottle. So the next step is to have a G-button put in. That way they can feed liquids directly into her stomach. She's been on a Nasogastric tube, but those are more a temporary thing, I gather. Always a danger of her pulling that out, too.

So we are disappointed that the feeding clinic was a failure in the desired goal of teaching Abby to drink orally. (But on the plus side, she did gain 2 pounds.) She continues to sound congested and rattly when she breathes. I guess she will be one of those kids with respiratory problems.

Please continue to remember her and her family. Life is stressful for them, since they are worried about Abby and her care is time-consuming.

Thanks,
Martha

MBombardier · Post by **MBombardier** » Thu Mar 29, 2012 12:27 pm

Thanks for the update, Martha. I so appreciate your keeping us informed about dear little Abby.

Lesley · Post by **Lesley** » Thu Mar 29, 2012 1:14 pm

Thanks Martha. Sorry about the thin liquids disappointment, but the good news is still VERY good. Coordination is often a problem with Down's kids, and one that many grow out of. It's wonderful that she is eating solids and putting on weight.

Keep us posted!

Deb · Post by **Deb** » Thu Mar 29, 2012 4:20 pm

Martha, my continued prayers to you and Abigail and her family. I'm sure the stress has been hard on all of you. Deb

Gloria · Post by **Gloria** » Thu Mar 29, 2012 6:26 pm

Thank you for the update on Abigail. It's a disappointment that the clinic wasn't able to help her learn to drink, but it is a good sign that she's gained weight. I hope, as Lesley wrote, that she'll eventually learn to drink on her own and won't need the feeding tube.

My mother pulled out her PIC line a few times, but never pulled out the feeding tube. I think it's a little harder to remove. I think it will be possible to find outfits for Abigail that will restrict her ability to pull out the feeding tube.

I will continue to pray for Abigail and her family.

Gloria

jme22 · Post by **jme22** » Thu Mar 29, 2012 9:59 pm

Martha,

I'm sorry the clinic didn't get the result that you and your family were hoping for with baby Abigail. Having said that, it is indeed good news that she gained some weight. That is a success in and of itself!

Continued good thoughts coming Abigail's way, and of course to her family as well.

Prayers going up,

Julie

Kari · Post by **Kari** » Fri Mar 30, 2012 11:44 am

Hi Martha,

Thank you for taking the time to continue to update us on Abigail - it means a lot. Sorry to hear about the bad news, but happy about the good ones. Will continue to send positive thoughts and prayers to all of you.

Love,
Kari

Martha · Post by **Martha** » Sat Apr 28, 2012 7:15 pm

Abigail is having surgery on Wednesday, May 2, to insert a G-button, which will allow them to feed her with a gastric tube directly into her stomach. Since the end of January, she has had a nasogastric tube, but she pulls that out a lot now.

It looks like the feeding issue may be a long-term problem. She still aspirates thin liquids, so now she won't even try to take a bottle or a cup. She knows it's going to feel bad. She will eat thickened milk off a spoon, and baby food off a spoon, and those go down okay. So it looks like her mom is going to be pumping milk for a while longer, and giving it to her through the feeding tube. It takes a lot of dedication on her part. Way harder than nursing a baby!

Abby has learned some signs now--she can sign "milk", "more" and "all done". And she is cutting her two bottom front teeth. We are really pleased that they are coming in at the right place. Often babies with Down syndrome get their teeth in odd order.

Anyway, please pray for Abby's surgery, or send good thoughts her way. It happens to be the very day that I leave for Thailand.

My trip has been planned since January, and the surgery was only scheduled last week, so it wasn't possible to change it. Plus, I do want to be in Thailand for the birth of my next grandbaby. He will make six.

Love,
Martha

Gloria · Post by **Gloria** » Sat Apr 28, 2012 7:47 pm

Martha,

It sounds like your family has a very busy schedule beginning in May. I hope all will be well if you're not able to be with them.

I will pray for Abigail's surgery. I'm sure it will be an improvement over the old feeding tube. I'm impressed that she is able to sign. I can't even do that!

Good luck on your travel to Thailand. It sounds like you've planned your meals well. Let us know how it went.

Gloria

Martha · Post by **Martha** » Sat Apr 28, 2012 7:56 pm

Thanks, Gloria.