Friday, April 29, 2005

Sleeping In Our Own Room!

So, since Holland has mastered the rolling over thing, she won't stay swaddled at night and is a crazy baby moving all around in her sleep. Every night she ends up sleeping on her belly. It wasn't working out for them to sleep together because Holly was always waking Eden up, so we finally made the big move into their own cribs in their bedroom. We had been contemplating the move after they came off the oxygen, but were finally forced to take action. Holland has really adapted well to the transition and is sleeping much better at night, mostly on her belly. Each time we go in to check on her we find her sleeping in a new position. This morning she had somehow managed to make a 180 degree turn in the crib, as well as rolling from her back to her belly, all while sound asleep. In fact, it was the first time ever that she didn't wake up to nurse, and didn't get up until 8:30am!

Eden has had a little more trouble adapting to the move. The first two night she didn't sleep well at all, but she did a little better last night. I think she misses her sis, or sleeping with mom and dad. She is still sleeping swaddled, but does get her hands out more to suck on her fingers.

Monday, April 25, 2005

Rolling Over

Holland has figured out how to roll from her back to front. She gets one arm trapped under her, but seems to like it that way better than being flat on her belly. She still hates being flat on her belly and will just lie there and fuss and kick her feet. Eden doesn't mind it so much, and has started practicing at lifting her head and pushing herself up. She's very close to being able to roll over also.

Holland's eczema has gone from bad to worse, to better, then back to worse. After battling it for the past few months I finally made an appointment with a dermatologist last Friday. He prescribed 2.5% Hydrocortizone and gave us a new bath regimen to follow for the next couple of weeks. I bathe her in the morning with lukewarm water and Dove body wash for sensitive skin. Within 3 minutes after her bath I apply mineral oil to her scalp, Aquaphor to the good skin, and the hydrocort to the thickened skin. Repeat at night. She doesn't love it, so I have to try to be quick. We've been following the routine since Saturday and today her skin was looking great. Of course, she had a great week after we switched from 0.5% Hydrocort to 1%, only to flare up again the week after. We have another appt with the dermatologist (who I really like) in 2 weeks. He says that her eczema is actually pretty mild and is confident that we will be able to control it. We'll see what happens. I hear it often gets worse in the summer:( I feel so terrible for her always being so itchy. She is like a different baby when it isn't flared up.

We had our first great weekend with no oxygen. Too bad it snowed... After being 84 degrees on Tuesday!

Friday, April 22, 2005

It's Official


NO MORE OXYGEN!!!!!! YAY!!!!! I couldn't decide which of these pics to post, so in honor of the occasion I thought I'd post them all. Aren't these just the cutest hats? They were a gift from Janie and family. Thanks guys! Yesterday I took the girls for a walk, Holland in her umbrella stroller and Eden in the baby carrier. They seemed to enjoy it and it was a lot less cumbersome than the big ole double stroller w/ carseats. Without the oxygen we are much more portable. Have you noticed I've been able to get more smiles out of Holland with the camera lately? Just actin like I'm gonna get her seems to be working.

Wednesday, April 20, 2005

Two Cuties

I just thought this one was too cute not to post. I took it yesterday during the 5 minutes that they weren't crabby. We did the overnight study again last night. Will post results as soon as I hear. Hopefully Thursday... Oops...just wanted to add that I weighed them yesterday. Holland is 12 pounds 2.5 ounces, and Eden is 11 pounds 7.5 ounces.

Tuesday, April 19, 2005

Company...Finally!

We had a great, busy, fun weekend with lots of company. On Saturday evening our friends Janie and Harry came over with their twin girls Brooke and Madison. It was really fun to get the girls together for the first time. Janie had twin girls after her sister had a set of boy-girl twins, just like I had twin girls after my sister had boy-girl twins. The funniest part is when Janie's babies were little I would go over to visit and help out, I used to sympathize and discuss how I was sure it would be much easier for me because there was no way I would have twins... Look at us now. Who would have thought???

On Sunday John's sister and bro-in-law visited with our nephews Cody and Connor. They had a long winter with lots of sickness, so weren't able to see the babies. I think they were impressed by our little mini-me's. On Sunday evening we went to our first family outing at my sister's house. It was great being able to pass the babies off and kick back for a while. My niece Claire LOVES the babies and wants to have one on her lap at all times. She is so funny, as soon as she sees the a baby she holds up her hands and says "hands" (meaning that she wants to wash her hands). Then she comes running back and plops down and pats her legs and says "wap" while pointing to a baby. So adorable:)

Yesterday I got adventurous and took the girls to my mom's house by myself! Their first trip to Nana's and my first time taking them out alone. Great fun. So, we're having some nice days. Nights are another story. Is it possible for a person to DIE of sleep deprivation???

Thursday, April 14, 2005

We Don't Need No Stinkin Cannulas

So, I was trying to wait to post until we got the good news, but unfortunately we have to WAIT. And patience is not my strongest virtue. We did the overnight study on Wednesday night and both girls did very well. I was hoping to hear the verdict today, but instead the O2 company called and said that they didn't get any data on one of the girls. And of course it would be Holland. Funny thing about the pulse oxymeter...it doesn't pick up when you kick your feet...Holland. The glitch wasn't with us, or with Holly, but with the darn machine. Maybe I'll hear by the end of the day about Eden. Based on my expert opinion (and I do believe myself to be an expert at this point), they are DEFINITELY ready! Holland and Eden are in agreement with me, taking the cannulas out themselves continuously (see pics).

Other big news is that Holland is now holding her toys and putting them in her mouth. Eden is close, but still usually just drops them. Oh, and Holland was afraid of Dr. Hurwitz. First time she showed signs of "stranger danger." Very developmentally appropriate:) I forgot to post their last weight from the Dr. appt last Friday...Holland is 11 pounds 13.5 ounces, and Eden is 11 pounds 2.5 ounces.

Monday, April 11, 2005

A Little Perspective

Then (Nov 04)...

Now (April 05)...
Wow...you are all very observant noticing that my girls don't have cannulas on in the last picture! Do they look a little funny, like looking at someone without their glasses when you have only seen them with glasses on? Is the space between their noses and top lips a little too big??? Nope, I know they are just perfect. So, here's the news. The girls had their pulminologist appt on Friday and it went really well. They were off their oxygen for 30 minutes and kept their saturation above 96%. Officially they are still on the oxygen until we do an overnight home study, but have been turned down from 1/4 liter flow, to 1/8 liter. The overnight study should be scheduled sometime this week (I called today to rush things along but the order hadn't gone through yet). The oxygen supply company will bring a pulse oxymeter to the house and we will take the girls oxygen off for 24 hours and monitor how well they do while they eat, sleep, etc... If all goes well they will be off oxygen for good. Yay!

Today we officially used up the last of the frozen breastmilk. I feel kinda sad about it. I had hoped that they would get only breastmilk for a year. Now I am still pumping three times a day, so they will get just about half breastmilk and half formula. I know I could increase my pumpings to produce more milk, but it is just too difficult and takes up too much time for me to remain sane. I plan to keep pumping 3X a day until the babies are one...although my sis thinks I should consider quitting at the end of May so I can enjoy my summer. We'll see...I don't know if the guilt will let me quit.

Lastly I want to send out heartfelt thanks to all the people who commented on Eden's hearing loss, and to all the other preemie parents out there who have sent emails and comments full of support, encouragement, and thanks. We are soooo happy that our story has been a source of encouragement and inspiration to others. We love hearing all of your stories. We also love being able to help others going through this complicated, emotional journey. THANK YOU!

Saturday, April 09, 2005

Happy Girls


Notice anything different?

Wednesday, April 06, 2005

Profound Hearing Loss

We had Eden's hearing appointment at Children's Hospital this morning. Despite not being allowed to eat after 2am, and having to be kept awake after 5:30am, she did really well and wasn't all that crabby. They gave her a small dose of Chloral Hydrate to sedate her. It worked right away and she slept like a dream all morning and didn't have any problems with her breathing or oxygen saturation. The testing took about an hour and confirmed our worst fears. She has profound hearing loss. They didn't get ANY brain responses at any frequency, meaning that she most likely has no hearing.

The next step for us is to make an appointment with an ENT and have an MRI or CAT scan scheduled to check out the structure of her brain and inner ear to make sure she has all the parts necessary for hearing. While we were at the appt they made ear molds for hearing aids. With the degree of loss, it is doubtful that she will respond at all to amplification, but it is something we have to try before thinking about a cochlear implant down the road. Eventually, if we do end up going the route of the implant, it would be done after she reaches one year old developmentally. That would be sometime after Nov 17.

On top of just trying to absorb all of this, and come to a place of acceptance, we have to contact early intervention and start thinking about Eden's educational future. I am a school psychologist, so of all people I should feel like I have a clue about what to do, but I am at a complete loss. I feel completely imcompetent. I can't begin to imagine what this would be like for a parent who has no knowledge or background in special ed or education. Apparantly we will have to make a decision regarding whether we want Eden to learn in a "whole language" environment (Dearborn Schools), or in a oral based program (Redford Union Schools). So far, my understanding is that in whole language they learn to communicate with sign language, in in an oral based program the emphasis would be more on learning to speak and listen. From what I gather, children who learn sign language early may come to rely on it more heavily and may not learn to speak as well. I also need to know if Eden will have to be full time in a hearing impaired program, or if there is any hope of her going to a regular school with her sister. I hate the thought of them being separated and having to go to different schools. I suppose I have LOTS of research ahead of me. I hope I will be able to make good decisions in order to get her the best help possible. I'm sad, and afraid... But I also love my babies and feel very lucky to have them...no matter what.

Saturday, April 02, 2005

Visiting with Aidan

Look at our big buddy Aidan! He was born a month after Holland and Eden and weighs as much as the two of them together...he, he. Aidan loves the babies and they are quite amused by him as well. We're having a great time visiting and we're so glad he came to see us!