Thursday, January 22, 2009

Swallow Study

I brought Aili in for her swallow study today. They use something called barium and put it in her formula ( They tried the formula as 'nectar' thick and it showed that she was aspirating a little. So then we tried 'honey' thick with a larger nipple. It was really hard for her to get any formula out. Even with this thickness she still aspirated some. So they said that we need to do all of her feeds through the NG tube for another month. Our next swallow study will be on March 6th (the day after Clay's birthday). We are supposed to have her suck on her paci while she is 'feeding' so that she will associate sucking with her stomach getting full. This will also help strengthen her sucking. The speech therapist also said that I could pump and that after I am done pumping I can put Aili to my breast which will also help her get batter at sucking.

So another month at least of NG feeds and lugging around equiptment.

First Bath

Yes I know she is already 8 weeks old and just got her first 'real' bath....but it finally happened. While in the hospital she had special antibacterial wipe down type baths and since she's been home it's been similar with sponge baths waiting for the cord to dry up enough and her scars to be OK. So last night on 1/21/09 Clay & I gave Aili her first real bath. It was pretty funny because she actually liked being in the water. She was mad before getting in the water and got mad when we took her out though. Here are some pictures....

More on coming home

We had our first check up on Tuesday the 6th. That went good. Aili had been spitting up and kinda gagging. The doctor thought it might have been her reflux so we up'd that medicine and she has been fine since. Then we had another check up on the 13th. She had lost weight which wasn't a huge deal, but she should be gaining. To try and fix that we up'd her nighttime feeds from 15 ml an hour for 8 hours to 20 ml. At that appt. we also tried giving her a bottle with a preemie nipple of just water. She did really well so Dr. Puntel said to do that a few times a day for a few days, then formula a couple times a day for a few days too, then we could try at each feeding. So we did the water a few times, but she would get SO mad when we would take it away. Since we couldn't just let her have water for a feed, we decided to just try the formula. She did great and so we just went straight to letting her try at each feed. Some feeds she would eat only 10 ml from the bottle and the rest through her tube, but some she would down the whole bottle, which is at least 45 ml but sometimes we would give up to 60 ml.

45 ml = 1.5 ounces
60 ml = 2 ounces

We had another appt. on the 20th and she didn't gain any weight, she stayed about the same. She is 2.95 kilos right now, which is 6 lbs 9 ozs. I'm amazed that she is almost 2 months old (on the 25th) and she still weighs less that Taryn did at birth (7 lbs. 6 ozs.). Anyways, since she still didn't gain any weight we up'd her night feed to 25 ml. Clay and I thought that maybe she isn't gaining because the formula she is on only has certain fats, because the ones in regular formula and in breast milk made her have fluid build up in her chest. So we asked if we could start giving her some breast milk again. He said that we could start with 2 feeds during the day and we will check tomorrow, which is Friday, to make sure that fluid isn't building up. She should be fine though, since it has been 4 weeks since we started the formula, so her chylothorax should have

We also have brought her to a Speech Therapist twice since we have been home. We go to her for feeding. She said Aili was doing a great job, but she sounded like she was swallowing a little late, which could cause her to aspirate. So we tried a thickener for her food. That seemed to help for a little while, but after a few days she sounded the same. She makes a gulping noise when she does this. I guess by swallowing late the formula kinda pools in the back of her throat, if it's just pooled back there then she could breath it in. So we go in today for a swallow study. For this they give her different consistencies of fluid (regular, nectar thick, & honey thick) to see how she is swallowing and what would be best for her. I think they actually video tape it somehow. After they are done with the study we will get to see the video too.

Well here are some pictures....

First time being held after her surgery. She hadn't been held in almost 3 weeks!!

In her wedge for her reflux. She sleeps in this. Also the blue straps are what I was talking about in an earlier post. She had manage to pull the top one up in over her face, which made her monitor alarm!

On our way to buy a double stroller off of was practically a blizzard.

First picture at home :)

Taryn being a good Big sister and helping Aili with her paci.
Grumpy Taryn with Uncle Andy & Aili
Tealia & Andy with Aili
Farmer Taryn

How much milk???

So I have a little game for everyone. I have been pumping since Aili was born...I have of course been saving the milk. Well when I left the hospital there was 7 plastic hospital bags and 2 paper bags full of the plastic 2-2.5 ounce bottles (some not completely full though). So I thought people might like to guess how many we had coming home from the hospital. Here are some pictures and I will post the answer later in a new post.
Just getting started (by the way we bought that freezer just for milk and it is a 8.8 cubic foot freezer...almost completely full)
All of the bags

Wednesday, January 21, 2009

New Years

Well I was pregnant for my Birthday this last year (2008), which just so happened to be my 21st Birthday. I have been waiting about 6 months to finally be able to go out and use my ID. So for New Years Eve our Friends Andy & Tealia come out and we went out. We basically just went to an Irish bar had a drink and talked. So I ordered a Washington Apple and I also had a small glass of Champagne at 12. Here are a few pictures : )


Sorry I haven't posted in such a long time...we have been busy, but now here are some updates....

Christmas was great. We spent Christmas Eve at the Ronald McDonald House. There was supposed to be a Christmas Cruise, but that fell through because of the weather, which had been CRAZY with lots of snow and ice!! So instead they still had a really nice dinner at the House. So we had dinner there and got a few things for the kids and ourselves. They handed out Santa hats, beanie babies for the kids, disposable cameras, special necklaces, and mini radios. Places had donated the items, like the cameras were from Bank of America and had there logo on it. They also had a few other things that were brought in. Both kids got one of the toy Chevron cars (the gas station) and Taryn got a stuffed Panda. They also both got $5 gift cards to McDonald's which we just recently used to get some Happy Meals : ). Anyways, Santa was supposed to come, but was running late because of the weather. Connor kept saying stuff about how he wouldn't be the real Santa and we told him you don't know that. Well part of the cruise is the committee buys each kid presents ($150 towards each child you have....I know CRAZY!!!). So after dinner and meeting Santa we went back to our room and there were presents for the kids, so we told Connor that must have been why Santa was late. They were ALL excited. Connor got a star wars video game for his DS, a star wars transformer and some clothes. Taryn got a play kitchen, some cats and some clothes. And BEST of all Aili got a motion sensor monitor (it will alarm if she stops breathing) and some clothes!!!! We were SOOO thankful for all of that, especially the monitor, which by the way we have been using and has gone off once when she got this strap on her wedge over her face! So after we did those presents we packed up, said hi to Aili and went back to Fort Lewis for the night. We spent the night down here and opened presents in the morning. The kids got a few presents from some family members and from people Clay works with, but the majority came from our 'Adoptive Family.' Fort Lewis has a program that you can enroll in if you qualify. We enrolled and our family was 'adopted' right away. We were adopted by the Washington State Liquor Control Board. We are SOOOO thankful for everyone that helped us out for Christmas. We made sure to take lots of pictures for everyone and the kids' faces were priceless. Connor got tons of Science related stuff, which he is loving and Taryn was in Kitty Cat heaven!!
I promise to everyone that I am working on Thank You's. I was just able to buy some cards and I am going to begin writing them as soon as I can. There have been lots of people that have helped us behind the scenes though. many people that Clay works with sent us meals, canned foods, and even chipped in some money to help out. I want to Thank them also!!! Everyone has been such a tremendous help and has really helped with keeping us as stress free as possible!
Anyways, here are some pictures from Christmas....

So how did we get SO many presents??? Well if you look at the left side of the tree, I think almost everyone one of those is from Connor's Great Grandparents. They thought that Connor wouldn't be getting a Christmas because of all that was going on this year and went ahead and sent him at least 20 presents!!! So we came home to this huge box full of gifts for him....boy were we surprised. They were also nice enough to send Taryn and Aili a present too, which we thought was very nice since they aren't related in anyway to the girls.
Opening their stockings