3/21/10
3/18/10
The Zoo
On a 70 degree day there was no way I was staying home! We took Ailyn on her first outing, the Zoo!!
She did so well. She held her bottle on her own when she was hungry, was happy as could be strolling around looking at the sites and people. I kept her in the stroller most of the time, we have a sun shade that covers the whole stroller. Made me feel safer about the germ factor.
Camden had a blast with his buddy, Connor. It was so nice to say "go run!!" And, they did.
Ailyn even got a little nap in. I was worried about feeding her out in public, because it's such a struggle at home. But, she did very well.
We stayed for 4 hours. Towards the end of the day, Ailyn did get a little overstimulated. But, once I got her in the car, she was more than happy again.
Thank you Jill and Connor, we had a great time!
3/17/10
3/16/10
Our Daddy!
Happy Birthday to the best husband and Daddy ever! Seems like just yesterday we were celebrating his 21st birthday. We have come very far from where we started 13 years ago. When we first met being married was the farthest thing from our minds. We were just friends who became best friends.... now I can't picture my life without him. We have been through so much over the years. I think if we made it through miscarriages, 4 years of infertility, 17 weeks of bedrest, the premature birth of Camden (now I laugh at that), 2 more years of infertility, overstimulation (me in severe pain for 14 weeks), thinking Ailyn had Trisomy 2, bedrest for 28 full weeks, the birth of Ailyn at 28 weeks, 75 days in the NICU.......(breathe....just breathe) we can make it through ANYTHING!!!!! 
I feel so blessed to be able to stay home with my babies. Our Daddy works very hard (sometimes too hard) to make sure that we live a comfortable life. I know I don't tell him enough how much appreciate him.
He is the best Daddy. When I was in the hospital pregnant with Ailyn for 2 weeks, he had to take care of Camden on his own. He would get him up, drive him to school, rush to work, rush back to pick him up, come visit me, cook, clean and take care of his business. Even though Camden would show up to the hospital with crazy clothes, no socks in 30 degree weather, Camden was always happy. When Ailyn was in the NICU, he would go there before work, and then again in the afternoon. He wanted to be with Ailyn as much as he could. He changed her diapers, did her cares and sat and rocked her. And, he was still there for Camden. It made my life so much easier, I knew that we had each other.
We will be married 9 years in May....WOW 9 years!
(this was Ailyn's first taste of cake, first textured food. It wasn't planned for her to have a taste. She leaned over the cake while I had my back turned and you can see where it went from there. She is almost one, it's ok, right?)
I asked Camden what he wanted to say about Daddy."He plays Star Wars with me"
"He plays Legos with me"
"we play outside"
"he makes me chocolate milk and oatmeal every morning"
"he comes home everyday to see me, then he goes back to work"
Happy Birthday Daddy! We love you very much. Hope you enjoyed your cake and presents.OXOXOXOXOXOXAnd, yes Camden wrapped Froggy up for Aaron. He took him back minutes later ;)
3/15/10
Welcome!
Welcome to the blogging world RAH ;) My sister now has a blog (My Life, on my side bar). Check it out! She is getting married in August, she and G have a 8 month old son EJ. Even though we talk almost everyday, I look forward to reading her blog and seeing pictures of my adorable nephew.
Ailyn's therapist is trying something new with her. Her arms are still pretty weak. Sarah thought she would try Kinesio Tex tape. It's a woven cotton tape that stretches lengthwise. The purpose is to try to make her more aware of her muscles. As sensory awareness increases, more attention is given to the arm, which increases use and in return increases strength. I hope this will help her out. Sarah and I think once she can move her arms more, she will do all her delayed milestones pretty quickly.
We have our "rent a dog" for the week. Meet Obie, she is a very good doggy......when she wants to be. We love having her over. She is like having another child though, a ton of work!
Look real close at Ailyn's left eye. (Yes, RAH this was when you were on the phone) Big brother was "playing" with her and a toy dropped on her face. Poor thing cried so hard. She was ok a few minutes later after many kisses and sorrys from Camden :)
Ailyn is now able to hold her bottle for a few minutes. But, if you don't watch her closely, this is what her face looks like. She takes the bottle in and out of her mouth and with the faster flow, she likes the feel of the bottle dripping on her. Trouble!Camden and I started working on school work after a 2 week break. I called it "spring break" I think we both needed some time off. But, it back fired on me today when I asked him to finish a work sheet " I am tired, I need a break".....after 2 minutes. It felt good to get back into our school routine. I didn't realize how much I missed spending that "special" time with Camden.
No appointments this week. I needed a break from doctor appointments, we have some busy weeks coming up.
3/12/10
Good and Bad
Ailyn did it! She is over 12 pounds! 12 pounds 5.9 ounces!!!! That is 11 whole ounces in 2 weeks. That is a record for Ailyn. The new nipples are still working. She is able to eat 4 ounces in 15 minutes. She does well on the solids. I have been trying to find the higher calorie foods and staying away from the oatmeal or rice cereal.Ailyn had her renal (kidney) check up yesterday. Her blood pressure was a little high again. She might have to start on medication to control it. The doctors want to give her a few more months. The high blood pressure could be the kidney disease. Her small size could also be from the kidney disease as well. Which is the same information we were told last time. We feel pretty confident they are keeping a close eye on her. Her blood work came back normal and we will recheck it again in June.
We also talked about the G-tube. They agreed we are doing the right thing and giving her more time to catch up. They didn't agree with feeding her solids either since she will get more calories in her formula. But, agreed with feeding her higher calorie foods and less "fillers".
We were thrilled with her weight gain! I hope she can keep this up.
3/9/10
Look at that belly!
Ailyn ate so well yesterday! She is continuing to eat well today. With the faster flow, she is able to eat 4 ounces in 15 minutes. I thought she would sleep well last night but nope! she wanted to eat more!! She is doing well with pacing herself. There are times she will cough but we know to give her a break and try again.Ailyn tried avocados for the first time last night. If you haven't seen the video, I posted it on my Facebook ;)(R, go check it out and many more) It's pretty funny.....she wasn't too thrilled. A friend suggested avocado since it's a good fatty and a great brain food. Camden and I tried it and made the same face Ailyn did.
We are really excited she she is drinking faster. She has a renal check up on Thursday. They will weigh her on the same scale the GI weighed her on. So we can see how much she has gained. I pray it's enough to keep the Gtube away!!
3/7/10
We got out of the house!
We took full advantage of the warm weather yesterday. We went late in the day so it wouldn't be too crowded. Ailyn loved being outside. She sat in the swing and stared at the world.
The surgery date is set for May 3rd. She has 5 big appointments before then and will get weighed each time. Aaron called the pediatrician on Friday and told him we wanted to start solids twice a day. He agreed this was ok to do. 
I posted our Ailyn's feeding problems on a micropreemie group. I have had many Mommies writing to me, sharing their stories and giving me advice. I try anything! A few Mommies have said that their babies have a hard time gaining weight and were just as small as Ailyn. This made us feel so much better! One Mom wrote to me telling us we should try a faster flow nipple. I sent Aaron to Walmart late last night to buy some. I had asked her therapist a few months ago if we should switch. She didn't want us to right then. Ailyn chokes pretty easy so we have be careful with feeding her too fast. BUT, she was able to pace herself VERY well. She has been able to drink 4 ounces in under a half hour! I really hope this helps get more ounces into her so we can keep the Gtube away!
I have to get her ready for therapy. Hope you all are enjoying this beautiful weather!
3/4/10
solids
Ok, I have decided that being parents is the hardest job in the world!!! I wish children would come with manuals. It would make our life so much easier!We are back to talking to doctors about other options other than the Gtube. Aaron and I have been stressing about what the right thing to do is. The therapists are against it as well for the same reasons we are. The doctors are strongly recommending it. Seems so simple to make a decision on that fact alone.....but it's not. The GI had said we can set a date for the surgery so if in 3 weeks she hasn't gained weight, we won't have to wait another month to get the tube.
Many of you asked why we don't just start solids. Or add butter (I laughed when I first heard this but a few people have told me to do this!) Ailyn's GI doctor doesn't want us to start solids just yet. We want to play by the rules ;) She has had solids and does very well with them.
For now we have started cup feeding Ailyn. It's not a sippy cup, it looks like a dixie cup. She does well with it.She doesn't have to work hard at sucking, so she doesn't loose the calories trying to eat. We were able to get 2 more ounces in her today at her feeding. we start with the cup and give her what she will take, then put the rest in the bottle. If we can get more into her each feeding, it will help her so much!
Thank you again for all the great advice. My anxiety is through the roof!!!!
3/2/10
Not quite 12 pounds
RSV shot....check Gtube....check :( We were hoping Ailyn would make the 12 pound mark at today's appointment. Not close. 11 pounds 12 ounces Aaron and I had agreed that if Ailyn wasn't gaining weight well we would agree to it. We thought for sure she was over 12 pounds! To see that she wasn't was so upsetting. I work so hard everyday, all day, all night to feed her. So her not gaining weight makes me feel like I am doing something wrong. The pediatrician reassured me this wasn't true. Since Ailyn is now rolling she is burning more calories. So she is taking 1 hour to eat 3 ounces, eating all day long, and active.
I really appreciate all your opinions and advice. It has made this decision much easier for us. Many of you have asked why we don't use an appetite stimulant. Ailyn's problem isn't a lack of hunger. She is having problems with sucking and swallowing. If she eats a bottle in 10 minutes, then she wants more. She has a lot of trouble sucking for some reason. She takes 24-26 ounces a day, which is normal but since she takes in an ounce an hour (some days she will do this), it's working against her. So it's not that she isn't hungry. We (and the doctors) believe it's more a coordination issue. I kinda wish it was a hunger issue, much easier to fix :(Aaron and I have sat online for hours looking up information about Gtubes and other feeding tubes. I have joined a group for parents that have children on feeding tubes. We have been able to collect a ton of information and advice. We wanted to make sure we did everything we could before doing something so invasive. We are well aware (and scared) of all the complications that can come with a Gtube. But, all the parents we "talked" with agree that it was the best choice they made for their child despite all the bad stuff that comes along with it.
Ailyn will continue to have OT once a week. I have ordered a few "toys" to help stimulate her mouth muscles. Our OT is great so I am confident she will find great ways to help Ailyn.The surgery will be in the next 3 weeks. The pediatrician, GI and eye doctor are trying to coordinate a MRI at the same time. Her eye doctor "strongly" agrees she needs a MRI to rule out anything neurological. I will keep you updated!
Thank you again for all your help and support. We are very lucky to have all of you here for us.
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