December 21, 2010


As I posted before, Rachel went in to have her kidney follow up last Thursday. It wasn't the visit we hoped for. When Rachel was born, or shortly after, they determined that she had one kidney larger than the other. All of our past visits were to make sure that the kidneys were evening out and returning to "normal." The last visit we had, 6 months ago, we were told there was progress and that her blood work was great. Which lead me to believe that this current follow up would be the last one. Unfortunately, the kidney doc showed us her ultrasound. Her left kidney was doing pretty good. It was growing like she was growing and only had a little big of "light" areas. Light areas mean that there is dense tissue and that keeps the kidney from growing and performing like it should. The right kidney, however, seemed to have not grown at all since 6 months ago and is now the smaller kidney. It was also pretty light which indicated a lot of dense tissue. Not good for a kidney. The doctor explained to us that we just need to keep an eye on them and to watch out for any signs that the kidneys aren't functioning the way they should. He said it's pretty possible that the left kidney will grow larger than normal to make up for the less functioning right kidney.

He also had some blood work done again. We finally got the call about that on Monday. He wants us to get another work up in 2 months. I am not sure why. Even thought he said her blood work concerning her kidneys was fine, he must have saw something that made him worry about something else even though he told me not to get worked up. Her hemoglobin, hematocrit and mean cell volume were higher than they should be. Does anyone have any ideas of what this could indicate? Her lymphocytes were low also but he really didn't seem bothered by that. I didn't think to ask him what his thoughts were at the time he was talking to me. I don't know why. I called him back today and left a message. Hopefully I will hear back from him tomorrow. I hope that this doesn't turn out to be anything big. I just want our girl to be healthy.

December 16, 2010

Waving and Clapping Video

We worked so hard on this! (I'm trying something new with the video so let me know if it doesn't work) Enjoy!

December 15, 2010

Waving and Clapping

Our little Rachel has been a busy bee! Yesterday she waved at me for the first time. Today she was waving all over the place. One hand or two! And, while I was watching her on her monitor in her crib she started to clap. It was really good clapping too. The nice hand smacking sound kind. She did it off and on the rest of the day. We tried to get some video but, true to form, we were too slow getting it out and she decided she had had enough by then. Hopefully tomorrow we will get some!
Two handed happy wave
Speaking of tomorrow, Rachel has a follow-up ultrasound of her kidneys and a meeting with her kidney doctor. They need to make sure her one kidney is going back to a normal size. Last time her blood work was great and her kidney was looking better. I am hoping this will be her last follow up. It would be nice to have that worry off our minds and to cross of one more doctor off the list.
I love this munchkin!
Next week I will be delivering all the donations we received for Rachel and Friends. I am so thankful to all of you who have donated. We have a nice selection of things for both hospital's NICUs and I am sure every baby will receive something nice. And their parents, who are so concerned with caring for their sick babies, will know someone is caring about them during this time of year.

December 14, 2010

Preemie Pants

Stephen and I set out and decorated our tree tonight. Since he'll be leaving right after the new year we didn't go as all out as usual but the house still looks good. While rummaging through the ornaments I came upon a plastic bag with something wrapped in it. I opened it up and found a pair of brown preemie pants by Carter's. Wow. A pair of Rachel's preemie pants. I thought I donated all but one outfit but here are a pair staring me in the face like a Christmas present. This little gift made me cry. Here we are just about to celebrate a new year and memories from two Septembers ago are still popping up in the strangest places. Holding those pants really tugged at my heart and reinforced how lucky we are to have each other. I'm going to keep those pants. I think I'm going to tuck them back inside the Christmas decorations so I can be surprised by them again next year. A sweet little reminder of the delicate boundary between life and loss.

December 11, 2010

Finally Feeling Better

I can't breath through my nose
Sick Little Girl
We are still coughing a bit and Rachel's nose is a running like a stream but I think it's safe to say the sickness is on the way out the door. On our travels home to PA for Thanksgiving, Stephen picked up a cold from my dad and passed it along to Rachel and I. It hit us fully the first day home after visiting Alabama. Saturday Rachel woke up from a nap and she was struggling to breath. She was better after about an hour but I knew this would be something that would happen again at night while she was sleeping and we'd be running around with our heads cut off at 2am trying to get to the ER. So, I went to the ER that afternoon to avoid that scenario. She was diagnosed with croup and given an oral steroid. Even though it wasn't an instant cure, I believe that by getting her that steroid at the first sign of croup kept her from getting really bad. Sunday, sickness hit me hard. I really thought I was getting the flu. Stephen was at work so it was just me (wanting to curl up in a ball on the floor with three layers of clothing on trying to keep warm) and cranky girl, Rachel. We were quite the pair.

Rachel's croup got better but she was sooooo congested that she coughed all night and when her nose was completely blocked she'd cry out for me to help her. Stephen finally took her to the pediatrician begging for help while I went to the doctor the same day and got meds for the sinus infection I had developed. Rachel received Nasonex. A gift from the gods! I never in a million years would have thought of using that for a cold but it helps reduce swelling in the nasal passages and it worked from the moment we used it. Snot came running out and she slept through the night for the first time in a week! The next day she took two 1.5 hour long naps!! She has been sleeping soundly ever since. So, that makes mommy feel better. Sleep is good. :) So after a week of feeling crappy, it's nice to know that feeling healthy again is just around the corner. Well, that is until we go back up north to NY to visit Stephen's family for Christmas.

December 7, 2010

Sweet Home...

Alabama. Yep, we're moving.

That is what all the secrecy has been about. Stephen was given an offer for a job down in Huntsville. He told them he wouldn't make a final decision until I got to see the place. They flew us all down there last week and he told them on Monday that he'd take the job. I can't say moving won't be hard. Which, for me, is funny to say. I've always loved moving and new places and I guess I still do. But, this area will be hard to leave. Don't ask me why Greensboro, NC pulled me in. I don't know why I feel so at ease here, like I was born here. I think it's because from the moment we moved here we've had nothing but good experiences and first experiences. This house will be hard to leave. We had it built. We decorated it and just got a fence put it. I love the woods in the backyard and I love our neighbors. It's just perfect and quiet. This house will always have so much meaning to it. It's our first home. We had many friends over and special times. And of course, we brought Rachel home to this house.

Finding our niche in Huntsville may be harder because of Rachel. I am not looking forward to getting services going and picking out new doctors because I love all of the ones we have here. It's going to be hard to say good-bye to Brenner's. I always feel safe knowing they are only 45 minutes away. Will I trust a new hospital the same? It's weird what preemie/differently abled parents worry about. I'm sure most people who move with typical children are just concerned with the school system. And that is still a concern for us too, but our concerns are different and harder to please.

I also have such good support here. I do not have family here in NC but I've seemed to always have people I can count on and have felt like they are family. Our local Ds group has also been wonderful. Lauri Lyn, I will always be thankful for you. You came into our lives at such a difficult time and you looked me in the eyes and I knew it would be ok. Do not stop doing what you are doing. Meeting with you in the hospital after Rachel's birth and all the info you gave us was heart warming. I have to say the frame was my most treasured gift. It told me that Rachel was worth showing off and it will always hold a picture of her in it.

Anyway, before I get too sappy, we have a couple of months before we actually move. I'm sure by then I'll have cried while talking to everyone I know and you will all be glad to see us go. ;)

p.s. if you are a luker and you live near Huntsville, please drop me an email and give me your take on where we should live.

December 6, 2010

Rachel and Friends

Christmas is only weeks away and Rachel and Friends has received a number of wonderful donations already. They are sure to put smiles on the faces of the parents celebrating the holidays in the NICU. If you would like to make a contribution, please email me at for our mailing address. Thank you!

December 4, 2010

Thanksgiving Whirl-Wind

We went up to PA for a week to visit my family and celebrate Thanksgiving. In true Erie form, it snowed. Yep, it wouldn't be Thanksgiving without snow. Rachel did not get to go out in it though. I was seriously too cold to even think about heading outside.
But she used her indoor time to practice her "big girl" crawling (hands and knees) and to practice pulling to stand. I can now say that she can do that all by herself now. It's really weird to leave a room and come back to her standing up at her toy. We also got to meet the newest member on my dad's side of the family. My cousin and his wife had a baby boy in September. He's only 2 months old but he's a little chunker already. And so very cute! This picture doesn't do him justice. Look at those cheeks!
Rachel had a lot of fun with her cousins...can't you tell?
Really, mom?
On our way to and from PA we stopped half-way and spent the night at a hotel. Rachel's max time sitting in the car is 5 hours and that's with a break half-way. So when we get to the hotel, she is ready to get moving.
hum...these look ok
but I love this toy so much better!
Rachel also got a bigger than I would have liked dose of restaurant food (which she loved). We did manage to make sure she got some good nutrition though. Here she is eating cheese and cheerios.
Hey dad, whatcha eating up there?
extra cheesy grin
Over all, it was a nice trip. I wish we could have spent more time with everyone but time went by so quickly. It felt like we had just got there and it was time to go already. Next long trip will be to NY to visit Stephen's family for Christmas. While I can't wait to see them, I am soooo not looking forward to the driving trip.