Keeping Busy

We've really been keeping busy and have experienced a lot of "firsts" with the babies over the past couple of weeks. Let's see, there were the first fireworks, first time staying at a hotel, first time swimming, first time seeing a live band, first time spending the night at Nana and Papa's, first friend's birthday party, and Eden's first time sleeping through the night! We took a mini family vacation to stay at the Quaker Square hotel in Akron, Ohio over the 4th of July weekend. The hotel is an old quaker oats silo that has been converted and all the rooms are round. There is some really cool art in the lobby, as well as a couple of nice restaurants, little shops, and a pool in the hotel. I remember staying there as a kid and thinking it was really cool. I have wanted to take John there for a long time, so we thought it would be fun as a relaxing getaway before a really busy week.

John took a vacation from work last week to help me out with doctor appointments because we had 3 important ones in a row. I use the term "vacation" very loosely because he actually ended up having to do some work from home and was probably more busy with that and appointments than he usually is! We had our developmental appointment at U of M on Wednesday. Holland now weighs 14 pounds 12 ounces, and Eden weighs 12 pounds 13 ounces. Holland has jumped up to almost the 50th percentile for very low birthweight girls, and Eden has dropped to a little below the 25th percentile. Holland is 26 inches long, and Eden is 25 3/4. Their head circumferences are exactly the same. Holland is pretty close to target with her motor skills, except for slightly decreased central tone. Eden has more of a developmental delay with motor skills in the 3-4 month range. She has more significant low tone in her trunk and mild tightness in her legs. The doctor, who is a pediatric neurologist, said that at this point Eden's tonal issues are too mild for her to feel comfortable making a diagnosis of Cerebral Palsy, but we are fairly sure that the diagnosis will be made sometime in the future. For now, we are doing all that we can to help make sure that Eden continues to make progress by getting physical therapy and working with her stretching and exercising at home. All of the therapists and teachers working with her now are very pleased with the progress she has made in a very short time. She has a great attention span, and seems really motivated to move and play with her toys. It's a lot of fun to watch how excited she gets when she sees something that she wants!

This is a picture of Holland and Eden with their buddy Giovanni. Gino and his family spent time with us in the NICU. He was born at 27 weeks on July 11th weighing 2 pounds 2 ounces. Look how big and adorable he is now! It was a lot of fun celebrating with his parents and seeing how far we've all come over the past year. It's just unbelievable.

Holly Dolly and Sweetie Edie

Caught Again

Another interesting choice of sleeping positions:)

So Funny

I just think this is hilarious, so I wanted to share. This is how I found Holland sleeping a few nights ago. I had to wake John up to come look and of course we took pics:)

Fashion Show

I've been promising a post about this for a while, so here it is! On June 2nd the girls were in a fashion show titled "Fashionable Growth" put on by the Family Advisory Board at Saint Joseph Mercy Hospital to raise money for the NICU. We participated with other families who spent time in the NICU, as well as some of our favorite doctors and nurses.

The girls wore really cute "Yummy Sets" by Keedo, and of course looked totally adorable. Eden was still getting over her ear infection and had only been on antibiotics for a couple of days, so she was tired and pretty out of it. Holland, on the other hand, was in a great mood, kicking and smiling at everybody who talked to her.

While we were on stage, the MC read a short story about our babies' NICU stay. H and E were the youngest participants in the show, but there was a 2 or 3-year-old girl there who weighed only 15 ounces at birth, and a 17-month-old boy who was born at 23 weeks, and weighed 1 pound 5 ounces (like Eden). It was very inspiring and a lot of fun. We love any opportunity to show off our sweetie pies!

We Love Daddy!

Happy Father's Day to the very best daddy in the whole world! We love and appreciate you so much. You ROCK!
Love, Mommy, Holly, and Edie

Hearing Aides and Physical Therapy

Eden got her hearing aides on Wednesday. Doesn't she look good in them??? My mom says we could paint her face green if she needed it, and I'd still think she looks cute...it's true. What can I say? On the way to pick up the hearing aides in Ann Arbor I talked to our favorite nurse at the pediatricican's office. I had noticed Eden pulling on her ear again, and was worried that she might be getting another ear infection (or the last one still wasn't completely better). They wanted to check her ears so we made an appointment for Thursday afternoon. Good thing, because Eden woke up on Thursday morning with another raging fever and the same sad pitiful mood that she had the last time. I was right. The same ear is infected again (or still?) so she is going to have another round of antibiotics. Because of the infection and fever, we didn't put Eden's hearing aides on yesterday, so today was her first full day wearing them. I gotta say, they are REALLY a PAIN. The left one doesn't work well at all because it is constantly whistling and giving feedback. The right one is a little better, but still rings every time she turns her head to the right. Which is a lot, because not only does she not have the best head control, but she always wants to look around at everything.

At our first appointment with the audiologist at U of M Eden showed a noticeable response to sound at 95 decibles. That is really LOUD and at the limits of the equipment. So the loss is definitely in the profound range, but the good news is that at least they were able to elicit a response, indicating that her auditory nerves are likely intact and she should be a good candidate for a cochlear implant. With her hearing aides she responded to sound at 85 decibles. Still VERY loud. We have to give it some time before we can tell for sure what kind of benefit she gets from the aides, but it is pretty likely that she won't be able to hear speech or anything other than loud noises.

Hmmm...what else have we been up to? Well, both girls were evaluated by the school district and Early On to see if they qualify for early intervention services. A physical therapist from the district came to the house to do the evaluation. Based on the results Holland was ineligible for special education because, so far, her development is "within normal limits." Eden does qualify and will begin receiving physical therapy through the school district in the fall to help with gross motor skills. The tone in her arms and legs is good, with no tightness in her ankles or hips, but she has low tone in her neck and trunk. The PT brought a "feeder seat" out to the house for Eden to practice in. When she is laying on her back she tends to play out to the side with her head turned rather than reaching to play in front. When she sits in the seat it helps her to strengthen muscles while keeping her supported and bringing her to midline. She actually likes playing there quite a lot.

We are going to be attending a baby group for five weeks this summer (starting next Wednesday) with a PT, Occupational Therapist (OT), and Speech and Language teacher (TSLI) to start working on motor skills. Holland will be going with us:) A teacher of the Hearing Impaired is going to start coming to the house once a week to work with Eden starting next Thursday. And a private physical therapist is going to come to the house once a week to see both girls through the summer starting next Friday. Whew... So much for a "summer vacation."

Babies in Bikinis

You can clearly see who the instigator is in these pictures! Not really fair, since she has the weight advantage, as well as the superior gross motor skills:)