Strawberry: April 2010

4/29/10

Hypertension

Above is my Real Life picture of the week. Camden has been a handful! I think he is very very excited Nanna and Logan will be here in days!!

Ailyn has had a history of high blood pressure. Each time they take it it's very high. Today the reading was 130/71 and later was 114/71. The plan was to check it in 2 weeks and then decide on if medication is needed. But, since it was so high today, the doctor (Renal) thought it would be best to start right away. I agree! This has had us worried for months now. So she had her first dose of Lisinopril tonight. In another few days she will have blood work and another BP check.

Once Ailyn's blood pressure is under control we will be doing the feeding tube. She is falling behind in her adjusted age milestones and her weight gain isn't enough. She is gaining but it's not enough. The feeding tube will take a TON of pressure off us as far as feedings go. We always stress if she is getting enough ounces in a day. She is so active, so she is burning too many calories moving around. I am trying not to have so much anxiety over it and telling myself we did our best to try to avoid the tube.

In GREAT news! Ailyn can now do "SO BIG". I had her in a cart in Target and a lady came up to us and said "OMG, she is SO tiny sitting up like that, how old is she??" When I told her she was one, Ailyn threw her arms up "SOOO BIG" You tell her baby girl!!!!

4/22/10

Melts my heart!

Ailyn had her 1 year check up today. 13 pounds 9 ounces and 25 1/2 inches. Poor Strawberry got 4 shots and blood drawn (CK-muscular). We talked about a feeding tube, and he understands we are not OK with the procedure. But, he stresses how well it will benefit her. He was extremely happy with her health and said she has surpassed the expectations of every doctor. For now we are not going with the feeding tube. The developmental pediatrician agreed with this and was happy with her weight gain.

We also went to the GI the other day. The GI was not thrilled with her weight but was OK with us not going through with the feeding tube right now. Instead we switched to Pediasure instead of formula. We have to try to get 36 ounces a day into her. Right now she can drink up to 32. The Pediasure is 30 calories. Her formula was 28 calories. She was VERY happy with the switch!! Camden even liked the taste. Her bottles now smell like a sugar cookie instead of gross formula. We are giving her the vanilla flavor because it has less sugar than the other flavors.

The developmental pediatrician appointment went well. Better than I expected actually. I was really worried that the doctor was not going to happy with her progress. She didn't expect her to be crawling and said she was close to the milestones she is behind in. She is around 6-7 months in gross motor (she is 9 months adjusted). This bothered me but she said considering where she came from, she is doing very well. We follow up in 3 months with her.

We ALSO had an eye appointment. The eye doctor was very pleased the MRI went so well. He wants to wait for two more eye measurements before he does the surgery. Her eyes are still getting worse. No surgery date as of now, but within 6 months she will have the surgery.

Ailyn's OT suggested we try a brushing technique. The brushing technique is used to calm the sensory system. We rub a soft brush on the palms of her hands a few times a day. At this point we are trying anything to help her use her arms. BUT, in the past few days we have noticed her using her arms a little more!! She can do everything with her arms but put pressure or pull herself up. Camden has some sensory issues also so it would not surprise us if this is the answer.

I am ready for a break from doctor appointments! There is so much information and things to think about, having so many at once is very stressful to us.

How sweet were these pictures??? Ailyn and I were watching Daddy and Camden practice baseball. Camden would come over to us and give Ailyn kisses and make her laugh. I love watching them interact, it just melts my heart!

4/18/10

One Year Ago Today

First a HUGE HUGE Thank You to Ken and Kim. They saved our lives that day. I will never forget them.

One year ago today was the most horrifying days of my life, yet it was the day we witnessed a miracle. Ailyn Rose was born. She amazed all the doctors and nurses with her will to survive. I thank every doctor and nurse on call that day. I was told it was a very tough delivery to be at. I will always be thankful to you for saving my daughters life.....and mine!!

The first few weeks in the NICU were a blur. I barely recall the details. Just the dark feeling I had at every waking minute. Every day I prayed we would make it another 12 hours. Aaron and I would stand over her incubator and watch her lifeless body letting all the machines do the work.

Ailyn never gave up the fight. She fought so hard to live. I am not sure at what point we were able to breathe knowing she would make it (I have yet??). It became clear that Ailyn was going to defy the odds.

At 2 weeks, we got to hold our miracle for the very first time. I don't think I can explain what it felt like to hold her. She looked so tiny in the incubator already, but when we held her she looked 10x smaller. We each had less than 5 minutes to hold her because her stats would fall. But, those 5 minutes were the best 5 minutes ever.

Holding Aaron's wedding ring makes this picture so surreal! I am glad I got this picture to be able show her one day.

Ailyn's nurses were amazing. (and yes, Whitney, we of course remember you!!) I look forward to the day (very soon) we can bring Ailyn in to thank them. Leaving my baby in the NICU was the hardest part. But, knowing we had great nurses who cared for Ailyn just as much as we did, made it easier to leave....even if it did take me forever to leave!

This past year has been quite the challenge! Trying to keep Ailyn healthy was a stressful one! BUT, we did it!!! NO colds or flus! Taking her to her many doctor appointments is another. I feel like we are always in a doctors office. I do feel very fortunate to live where we do, we are blessed with a great childrens hospital and hospital.

Camden met Ailyn when she was 3 weeks old. At the hospital she had her PDA ligation they allowed siblings over 2. Camden was on cloud nine that day. Aaron and I still say it was our proudest moment as parents that day. He was not afraid of her wires and IV's, in fact he wanted to hold her and do everything for her. To this day he has the most amazing bond with her.

Thank you to everyone who has been here for us this year! I plan on keeping up with Ailyn's blog. It's therapy for me and I love sharing her story with you all.

HAPPY BIRTHDAY STRAWBERRY! You continue to amaze us every single day. Daddy, Mommy and Camden are very lucky to have you in our lives. We hope you enjoyed your birthday!

(I will post more later but Ailyn LOVED her cake.....)

4/17/10

Before and Now

Seems so surreal tomorrow our Strawberry will be ONE years old!! I think I have been trying to prepare myself all month and I still get so emotional about it. And, to make it worse.... when I took the picture below, she looked so old to me!!! Zaky was Ailyn's best friend in the NICU. Her Godmother sent it to her right when she found out Ailyn was born. So it was in her bed from beginning to end. It is filled with little beads so it gives it a little weight. I always loved wrapping it around her when I left so she would think she is being held. In the above picture she is under 2 pounds, below she is 13.5 pounds.

4/15/10

3 More Days!!!!

Why YES that is a huge scratch down Ailyn's face. I was going to photoshop them out but what is a first birthday photo without a scratch or bruise?? Strawberry will be ONE on Sunday!! I took her photos for her birthday invitation. I hope you enjoyed the pictures :)

4/14/10

Real Life Pic and well....Real life!

Above is my Real Life picture of the week. For two reasons.... #1 I have a love/hate relationship with our deer friends. We have 2 deer families that come around, one family has gotten rather bold in the past years. They suck off my roses, tulips, daffodils, heck anything they can get into. I use a great spray that works but haven't bought it this year yet.....and should have, because they sucked my tulips the very day I was going to cut them and put them in a vase. #2 I have been trying hard to get out in my gardens. Last year it was impossible since I was on bed rest and then going to the NICU daily. The church came over and mulched and planted beautiful flowers, it was so nice of everyone! Ailyn is not making it easy. But, today I got a ton accomplished. Thanks to my helper, Camden who has been planting green beans in my gardens :/

I should call this my Real Life photo #2 of the week. Not more than 4 times out in public, the stomach bug found my poor little guy. It was horrible! I forgot how much I hated seeing my baby so sick. It took him a full 24 hours to feel back to normal. Our tough girl was spared.....