7 Weeks Old

Addie turned 7 weeks old yesterday. As of today she weighs 6 lbs, 5 oz and is outgrowing her premie clothes. I can't believe she has gained so much weight! Sometimes I look at her and and can't believe she is that same baby I watched in the NICU for two weeks, afraid to even pick her up without help from the nurses. We stared at the monitors, worried everytime she would cry and her heart rate would go crazy, her respiration would drop. She does throw a good fit. She's gained 7 oz in one week. She's getting stronger, trying to hold her head up.

Ainsleigh and I went out this Sunday to "P-nera" as she calls it. She made a good friends there with another little girl. She wore her boots and had fun walking through the snow and catching snowflakes on her tongue. I love my girls! But wow, am I sleep-deprived.

Addie Update

Well, Addie successfully pulled out her feeding tube twice this weekend and had to take full bottles without it. She was so happy to have her nose clear that she stayed awake for 4 consecutive hours, bright-eyed and happy. So, the nurse asked if we wanted to go without it. Her oxygen was good too, so she is without that tube most of the time. I got some pictures with just the tape on her cheeks, but we've got that off and, if she would wake up without fussing, I'm hoping to post some pictures with her face tube-free! It is so nice to see her little cheeks and a dimple was revealed on one cheek!

She's getting purple more often (a side effect of her heart problem) and having some strange spells where she seems to be unable to catch her breath. But, her weight is up to about 5 lbs, 12 oz. Every day has been different. Her congestion has improved and her diaper rash is about gone. We're trying to enjoy everything about her as long as we have the opportunity and trying not to stress about things like the future, and hospital bills, but Tim isn't very good at that. Ahh...life is so stressful sometimes! It's hard to be calm and enjoy the baby with so many variables. We're doing okay today, we just don't know how long her heart will function along with her other problems with her kidneys, intestines and any unknowns! It's so hard to see her look like she is in pain, especially when she has trouble breathing. We're not sure how her body will handle things as she gets bigger. As her mother, I just want her to feel better and be healthy. She's so sweet, I can't describe how it feels when she looks up at me, wide-eyed. It's hard to believe she has such a severe problem. I'll keep adding photos, we have so many!

Merry Christmas!

Ainsleigh asked me several weeks ago (prior to Addie's birth) what I wanted for Christmas and I told her that I just wanted to have both of my girls home for Christmas. She told me that, no, I needed a present..."daddy and i get you a doggy...or a kitty cat." She ended up bringing me a stuffed dog to the hospital that she thinks is a cat because it has pointy ears. Today I'm pretty excited that I got what I wanted. Addie is 3 weeks old today and sleeping soundly in her bassinet (something she rarely does at night).

She's sounding really congested and her eyes are really gooey, poor thing. I tried so hard to keep her from getting this cold bug that everyone seems to have but don't think I succeeded. We're stuck at home though. Poor Ainsleigh asked where we were going and I feel bad that we're so boring and alone on Christmas. She's been such an awesome big sister, no jealousy. She just loves Addie so much. I walked out of the room with Addie in my arms and Ainsleigh told me to bring baby sister back. Too bad there isn't much to entertain Ainsleigh today. But, I am happy we're all here and have the photos to document it. Hope you all had a great Christmas.

Home!

We're finally home with Ainsleigh and Addie. Ainsleigh was thrilled to find the Christmas tree up and her room and toys still here! We're exhausted and sleep deprived. I got sick last night but am feeling a little better today. Of all times to get sick! Hospice came last night and this morning. They'll come everyday. I was still in my pajamas today so I feel weird having a stranger come and see me not cleaned up. Our house is wonderful thanks to Matt and Carly.

Ainsleigh is happy to have Addie around. She's getting really attached. Today she said, "mommy, i hold baby sister's hand and she hold mine! Isn't that cool, Mommy!" It was pretty cute. I'm nervous about the future and how Ainsleigh will take it. Hopefully the exhaustion will subside so that I can enjoy Addie more. She's been taking more from the bottle the last few feeds. maybe she'll start taking enough that we can remove the feeding tube. Wouldn't that be nice! The feeding tube is a pain.

Thanks for everyone's kind comments and prayers. We really appreciate it. I'll keep you posted.

Our Little Fighter

Well, today Addie Jo is 11 days old. We sang happy birthday to her when she made it to one week. The geneticist said most trisomy 13 babies only live for about 7 days. Addie is beating the odds. We hope to bring her home Monday. I am scared, but glad we can spend more time with her. Pray for us. Pray for Ainsleigh too. We've been away from home for almost a month now and Ainsleigh needs her routine. Addie is doing well but not wanting to take her feeds from a bottle, she has a feeding tube. Today they took her completely off the IV. The dr thought she was getting enough fluids without it. We didn't think that would happen until Sunday.

Wow, what a crazy week it has been. Life changes so quickly.

Welcome Adeline Josephine!

Well, Addie is here! She arrived via emergency C-Section on Monday, Dec 4th at 5:21 pm. She weighed 4 lbs, 2oz and was 18 inches long. She has lots of dark blond, wavy hair. We found out on Thursday that she has trisomy 13, a chromosome disorder that means she probably will have a very short life, depending on how her organs handle things. Most babies don't make it past the first month. It has been a really intense week for us. She was baptized Thursday night and the hospital gave her a beautiful little gown to wear. She's still hanging in there and doing well breathing on her own. Yesterday they even let her nurse for awhile, although she is still being fed via IV. If she can handle food, she might be able to come home and have hospice care.

We're blessed to have this time with her, although it's really hard to understand and manage celebrating her life and grieving her at the same time. Everyday has brought something unexpected and also amazing. She's a little piece of heaven. Ainsleigh got to hold her Friday and sang "you are my sunshine" to her. She's not really allowed in the NICU without a face mask though, so it has been difficult bringing her, she DOES NOT like that mask. All of our brothers and sisters have made it back and been able to meet Addie. We can't even begin to describe how wonderful that is, and how blessed we are to have the amazing family we have.

Thanks for all of your prayers, we know it is the only reason we are having the strength to make it through everything. The decisions we are making now are so difficult. Definitely not something I would have ever imagined having to make in regards to my child. Life is really so fragile, but we are so blessed .

Please pray now for Tim. He has to return to work next week and neither of us are ready. He has used all his vacation time up by taking last week off and we can't afford unpaid leave. Please pray that something will intervene to provide for us financially so that he can spend as much time with Addie as possible. This is all the time we will have with her, so it will be hard on all of us for him to go to Davenport while we stay in Peoria. God has been faithful through this. The nurses and doctors have been awesome. The hospital took pictures of Addie that we are looking forward to sharing.

I'll try to post some pictures as soon as I can and I'll try to keep everyone updated.

Update

so some bad baby news. Turns out she is very small, only measuring around 30 weeks, her poor tummy only measures 28 weeks when she should be 35 weeks. I go to the hospital tomorrow (friday) to have the baby monitored, then on Monday, they will do an amnio to check her lungs. If they are developed enough, they will take the baby on Monday, November 27th. If not, they will continue to monitor for one more week, and take the baby no matter what. My original due date was Dec 24th. They think maybe something is wrong with the placenta due to a blood clottting problem I have inherited. so I am on bedrest and staying with my mom and dad in knoxville. Tonight Tim left to work tomorrow and Ainsleigh went home with in-laws. It is weird to be alone on Thanksgiving but I need some good sleep.

Pray for my little one. She is such a fighter. Her heart is fighting to stay as strong as it can and she's moving around quite a bit. I'm on dial-up so I might not get to check this much. Pray that I get some darn sleep too!

This funny little girl I have

So last night Ainsleigh pats my tummy and says, "mama, when baby sister come out, she going to want to eat." Tim and I cracked up as she kept saying it. We asked her, what will baby sister eat? Ainsleigh says, "um...baby food." Then she cupped her hands together and reminded us that baby sister is very little, "she fit in my hands."

We asked her what else baby sister will do and she said, "you put her in my high chair and we do art projects." Okay, I'm such a mommy. But, wow, are we so blessed to have this little joyful girl around all the time. Even when I'm tired and 34 weeks pregnant and just want to sleep. She somehow motivates me and makes me laugh! I just had to share.

About our new baby...

I thought I'd try out this blog thing to update anyone who might be interested. So we have this little girl due December 24th. She has been diagnosed with a heart defect called tetralogy of fallot which means she has 4 problems with her heart, the major problems are a large hole between her bottom ventricles and a very small pulmonary artery. If her pulmonary artery is too restricted at birth, she will require immediate "open chest" surgery to temporarily insert a shunt to redirect blood back to her lungs for more oxygen to go to her organs. This will require a hospital stay of 2-3 weeks. If the artery isn't too bad, she will be "blue" which means she has reduced oxygen in her blood, but they will try to avoid surgery until it can be permanantly repaired when she is between 3 and 6 months old. There is also a chance (we've heard statistics ranging from 10 to 40% chance) that she could have a chromosomal problem called 22Q deletion syndrome that kind of includes all sorts of possible problems, the extent of which will be unknown until she is born.

Our next major dr visit is Nov 21st and we'll see the cardiologist again and they'll check out her heart to see how the artery is doing. We'll also have a level II ultrasound to check out the baby in general. We should know by then when they'll schedule my induction date!! Hopefully it is soon, I'm getting really tired of this pregnancy thing, although I can't complain too much. It's just now starting to bother me. It will probably in early to mid-December and we'll deliver at St. Francis in Peoria.

So there's all that technical stuff. It is all in God's hands! Any prayers are appreciated! I'll update again after the dr visit on Nov. 21st.