A few more weeks

Ailyn is drinking from her cup so well now......of course it could because she likes the sweet prune juice that is in the cup. The cup takes up her whole face!
The eye that is turned in above is her stronger eye but last night it was the weak one.... I don't get it. We will find out when her eye surgery is next week.
She LOVES pizza crust, Pizza Hut pizza crust ;) I have to pry it out of her hands when it gets soggy, and you can see above this doesn't make her happy.

Today Ailyn saw the pulmonologist (sp) She was thrilled Ailyn has been healthy all winter. Of course she didn't like Ailyn's size, but was happy with the improvement in the past month. She agrees that we don't need to rush into a feeding tube. She is back on the growth chart so that should make her doctors very happy....I already called and left messages ;)

I brought up Ailyn's weak arms. Since it stumps every doctor and therapist, I try them all! She referred us to a neurologist. She did say it was good her MRI came back "normal". For now we have an appointment in July but I am sure between all her doctors, we can get this date moved up. I want to catch anything early and try to fix it before it affects other milestones.

And, I saved the best for last..... We can be off house arrest in a few short weeks!!!!! The doctor said RSV is slowing down, last week they didn't see any cases. WOO HOO!

Continue Reading ...

Sunday Sunday

Ok, Ok, I have been a slacker on my weekly "Real Life" picture. Above is my "office" where I make a huge mess planning out Camden's school work for the month. Planning a month of work takes days. I am constantly interrupted with life :) But, I am very excited about our upcoming projects and lessons.
T-Ball starts soon. Aaron has been waiting for this day since we found out Camden was a boy. He took Camden to Dick's to stock up on baseball gear. They practice every night. I am SO glad Camden is into baseball because I do not have an athletic bone in my body!
Ailyn is getting better at sitting....kinda. Right after this picture she did a face plant. We have a week off from therapy this week. I am actually going to miss our therapists! I look forward to our therapy days.
Camden and I planted our tomatoes, green beans and peppers a few weeks ago. Raegan has found them and will take small nibbles....I am hoping we have some to plant outside.
As you know Ailyn is TERRIBLE at keeping her patch on. I dread the two hours we have to fight with her to keep it on. She is so quick at getting it off. One benefit to her being so tiny is that she still fits in newborn mittens.......
she did not like this idea AT ALL!

Continue Reading ...

MRI Results

I called my pediatrician first thing this morning to see how long we have to wait for the MRI results. Not long! I got a call this afternoon. Everything looks great! Of course there are some normal micropreemie "issues", but they expected that. The eye doctor told my pediatrician to tell me that he was impressed with the results and the fact that Ailyn's Strabismus (crossed eyes) got worse is not anything neurological. So Ailyn will be able to have eye surgery to fix her eyes.
We are thrilled with the results and can breathe a little easier tonight. Thanks for all the prayers and support!

Continue Reading ...

MRI

Part one is over! Part two...the results, will take a few days. It went really well. Aaron and I got to be with her when the doctor put her to sleep. I didn't plan that! The doctor asked me to sit her on the bed and he layed her back on his lap and put the mask over her face!! She tried to be tough and fight....the gas won ;) I am glad now that I was there for her, we were the last faces she saw and the first when she woke. Daddy, AKA paparazzi took many pictures of Ailyn waking. I had to share this one below.

Thank you, thank you, thank you once again for all your prayers and support. Our friend Johanna, a priest sent out a prayer request to many and she came over the house after to check on Ailyn after the MRI. We are so lucky to have all of you :)

Off to bed!! We are very tired!

Continue Reading ...

pre-op

DRUMROLL PLEASE!!!!!!!!!!!!!!!!! Ailyn is 13 pounds!!!!!! WOOO HOOO! I think we might be able get away with no feeding tube. She has her good and bad feeding days, but overall she is doing great. She is able to drink faster so she doesn't burn as many calories. She is no too fond of many solids. Sweet potatoes seem to be the fav.....

She also had therapy today and Sarah said she saw a huge improvement since last week! Go Ailyn, Go Ailyn! She sat for a long time and tried to catch herself with one hand. She didn't put pressure but put her hand on the ground. Hopefully this means things are clicking for her.

So proud of our Strawberry today!

Continue Reading ...

Ahhh Spring!

Continue Reading ...

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!

Continue Reading ...

For You R

this is Ailyn telling me she is all done eating

Continue Reading ...

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.OXOXOXOXOXOX

And, yes Camden wrapped Froggy up for Aaron. He took him back minutes later ;)

Continue Reading ...

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.

Continue Reading ...

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.

Continue Reading ...

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!!

Continue Reading ...

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!

Continue Reading ...