Thursday, January 28, 2010

7 crazy months

Miss Aly Jean is 7 months old today. Unbelievable. The last 7 months of my life have been the craziest roller coaster I could never have imagined. Today I've been thinking back a lot to the first day of my daughters life. I don't think I've ever talked much about that day from my perspective. My daughter was born in the early early morning on June 30th by c-section. I did not get to see her in the operating room because she came out "floppy" (blue and unresponsive). She was rushed into an assessment room and as soon as they walked through that door she took a big breath and began her life. They came and got Jeremy from the operating room and took him into the assessment room so he could see her for a few minutes. They let him "help" with things like taking her temperature and getting basic vital signs. After I was taken back to my room, my nurse put up a fight with the staff that was taking Aly up to the PICU because I hadn't even seen her yet. She insisted they find a way to bring her to me for a minute. ( I didn't think that was going to happen) So to my surprise, my baby girl came rolling into my room so I could see her for a few minutes. But no one got to hold her. Aly was 6 days old before she was held by either of her parents. I held her before her first surgery and then not again until two weeks later. I still can't believe everything that she has been through. What an amazing little girl.

All of this nostalgia started at Alys cardiologist checkup on Thursday. We were in the waiting room at Dr. Z's office and I decided to read Aly this book:



As I started reading it, I got really choked up. I remembered the first time I met Dr. Z when I was 8 months pregnant. I had gotten my diagnosis, been to U of M for confirmation and to find out the next steps. We were meeting Dr. Z so that he would see us before Aly was born and have an opportunity to do an Echo on Miss Aly while I was still pregnant and see what we were starting with since he wouldn't see her again until after we came home from the first surgery. While I was in the waiting room, I was nervously flipping through the magazines and books on the tables. I came across this one and read it. I thought it was a great book and I told Jeremy that I wanted one. So I wrote down where I could get one because I daydreamed of one day, reading this to my baby after we got through some of this. So when I was reading this to Aly the other day, I realized we had made it. We have come full circle back to fufill a dream of mine for her. I know we are still a "work in progress", but you know what? Who isn't? Some have bigger challenges like Aly and some are lucky enough to have smaller challenges in life but we all have them. We are doing the absolute best we can with our challenges and our Aly still amazes us on a daily basis. Here she is waiting to see Dr. Zriek after we read our book in the waiting room:


She is sitting in the "big girl chair" for the first time and watching the fish. Seriously, how much cuter can she possibly get? :)

As for her check up with Dr. Z, in his words,"Aly gets a good grade from me today." Her EKG looked great, she sounded great, her blood pressure was good. Her sats were 94, which I'm a little uncomfortable with, but he didn't seem to concerned. When we were at U of M for her Hemi-Fontan, I was talking to one of the PCTU nurses about sats and she said that too high was not really something they liked to see as well as too low. But, if Dr. Z isn't concerned then neither am I. (But that doesn't mean that I haven't been trying to find a way to get my hands on my own pulse oximeter that I can have at home. Any suggestions? )

One of the best parts of the visit was her weight. I think I can say with confidence that our weight gain issues are over!!! WWWHHHEEWW!! Aly gained 22 ounces in 3 and a half weeks!! Which is a phenomenal weight gain for her! We couldn't ask for anything more. This has been one of our biggest issues (which I am extremely thankful for- many others deal with much larger issues) and it is such a breath of fresh air to not have to worry about every ounce.

She is doing so well. We are so blessed for little Aly. My heart goes out to heart families who have lost their children. Just in the last couple of weeks three other heart children whose stories I have been following have become angels (Rachel, Ava and Josiah). Everytime this happens, my heart just breaks for these families. I know I can't do anything to take away their pain, but I know that I can appreciate my daughter and how well she is doing and never ONCE take for granted any one second of her life. I know that no matter what, those parents would give anything to hold their children for just five more minutes. I'm sure no matter how long you have with them, you could never say it was enough. So, in honor of these babies (and the many, many others) of their families, give your kids an extra hug, an extra kiss, be sure to tell them you love them or hold them a few minutes longer today, for those who can't.

I'm off to take Miss Aly to the mall! We are headed for treadmill shopping!! Now that we have her GAINING weight, it's time for mom to focus on LOSING some.... :)

Wednesday, January 13, 2010

Things around here...

Aly went to her pediatrician today for her 6 month checkup. We are running a little behind (she is about 6.5months now) with pediatrician appointments and vaccinations but we're working on it. Anyways, I was thrilled to see that Aly has gained a whole pound in just two weeks! Now I know in boring old normal baby world ( :) ) that a pound in two weeks isn't unheard of but in my special heart baby world it is a reason to dance around the room! :) I am hoping that maybe our weight gain worries are over. Aly will still most likely gain weight at a slower pace then other babies her age but as long as she is healthy and we can feed her 100% by mouth I'm as happy as can be. Surprisingly enough, her weight is in the 10th percentile! I didn't expect that she would be on the charts. Her height falls right around 50th percentile and (here's an interesting one) her head circumfrence has jumped from 10th percentile to 25th percentile. Our close family, as well as Jeremy and I had thought that we noticed after her Hemi-Fontan it seemed like her head was larger (which they said was likely) but I just assumed it would go back down. But I guess not. Have any of you other heart parents noticed that after the second surgery your babies head was bigger? Just curious.....
Other than that, I could not believe the changes her pediatrician wants us to make! She said to start having Aly use a sippy cup with water in it, feed her "people food" (mushy~ bananas and such, but still!!), take AWAY her pacifier (easier said then done) and work on sleeping through the night. So.. as soon as we got home I filled a sippy cup with a little water and handed it to her. She of course stuck it right in her mouth (because thats where EVERYTHING goes), played around with it for about 10 seconds, threw it on the ground and moved on to a new toy. It was still so funny to even see her holding one. She's just my tiny baby! What is she doing with a sippy cup??
I just tried taking away her pacifier for the first time. No go. We can put Aly in her crib when she starts to get sleepy and she will put herself to sleep. So tonight I put her in her crib when she started to get sleepy WITHOUT the pacifier. After 10 minutes of what can only be described as exhausted fussying (I'm not even sure she was really even awake) I caved. As soon as I put the pacifier in her mouth she was out like a light. So another question.... What do you think about taking away the pacifier? Is it really necessary at just 6 months? Or is it easier now then later?
A couple "heart moms" told me before Alys second surgery that life is just so much better once that is over. You were definetly right. Aly has just blossomed since her surgery. She just has so much energy, she is talking and laughing, rolling over, reaching for things, putting things in her mouth (including her toes, as of lately).... the list goes on. Gone is that fear that is engrained into us that she should not get too upset, that it is IMPERATIVE that she not be sick (not that we want her to get sick now but we REALLY REALLY didn't want her sick in between surgeries), that our world revolves around getting as many ounces in her as possible to be sure that she will "make weight" for the second surgery..... It's such a relief. Now I truly get to just enjoy my baby and not be constantly running to drs appointments. Life is good. I appreciate everyday the blessing that my baby girl truly is. Her strength just floors me. I look at her and can't even believe all she has been through. I hold her and just cry sometimes when I read of a heart baby who has earned their angel wings. I have no idea what Gods plan is or how it works. At times, I almost feel guilty that I get to have her everyday while others are grieving having held their babies for the last time here on earth. I thank God every single day for our little miracle.