Praying for Wet Diapers

My poor baby girl is swollen. It is hard to look at her; it looks so uncomfortable. Someone removed a piece of tape and it ripped off a little piece of skin. Her skin is so tight because it is stretched out from all the excess fluid. It hurts my heart to see her this way. I am praying constantly for wet diapers. It goes on and on in my head. They gave her a diuretic to help her pee more but for now we are playing the waiting game.

On a positive note Alyssa received a letter from her grandpa in Korea. I guess there is a way to submit an email through the hospital's website and they print it out on cute little paper and deliver it to the NICU. I cried so hard when I read it. Thank you Papa Dos! :) Also the xray came back and she has no pneumatosis. God is good!

Pneuma-NO-sis

During rounds today one of the doctors said that there was a possibility of pneumatosis. I asked our nurse after the docs left what that meant and she said that it is basically an infection. So they are doing an x-ray at noon today so we should have a better answer then. So I am praying for NO pneumatosis or pneuma-NO-sis. :)

Urine output is still a concern. Her swelling keeps going up; I feel so awful for her. And to think 2 days ago she had double digit cc diapers! But she has had some major changes in the past couple of days: she's off her blood pressure medicines; she's off the ventilator and having to breathe more on her own; she's not getting platelets or blood transfusions as often. So maybe she just needs a couple days of rest and for her body to adjust to all the changes. She is moving around more than she was yesterday but I can tell that she just needs to rest. So when we visit her we just sit there looking at her, hoping and praying that she will feel better. I know we aren't the only ones praying and that comforts me to know so many people worldwide are praying for her. Throughout this whole experience (from finding out she has down syndrome to being in the NICU) I've learned so much more how God is faithful and just plain awesome. I'll post an update later on the pneumatosis.

Feisty Little One - FLO for short :)

Alyssa has a temper! It is so funny to see her get upset. She scrunches up her face and balls up her fists. She gets upset when the nurses suction her (well I would too), when I mess with her feet, when she can't locate a noise in the room...But my mom says that's why she is fighting every day!

I am so thankful for all of the people who love her. So many people have helped us - even when we haven't asked. God is so good. We've had a lot of really good friends come up to see her and I am so thankful that they would drive 2 hours just to see her. It is really nice to see friends - it keeps me positive. Some friends came up the other day and left a little rock with the word "pray" on it. I saw a cute photo opportunity and had Jamie put it on her hand (after sanitizing it!). Here is a picture of it even though it is a little hard to read. Thank you for all of your prayers for our little girl. Please continue to pray!

She's Wonderful

I love when people compliment Alyssa. Today a doctor came in the room. She was looking at Alyssa and I turned and looked at her. It looked like she was thinking and then she said "She's wonderful." I couldn't help but feel happy and so proud. I am also so happy when they say how good she is doing or when they are able to decrease something. I am filled with love and pride for my sweet little girl. Like today when the nurse told me that she was off all of her blood pressure medicines! Woo hoo! Or when the nurse told me that she had a 17 cc diaper. Who would have thought that we would want to jump up and down for a wet diaper? They are also adding lipids to her drip which will give her more calories to help fatten her up. Her weight is double what it was when she was born, but it is just from the swelling from all the liquids they give her. But the more she pees the more it will help the swelling.

Today when I went in after shift change I had a wonderful surprise. The nurse put on a pink little bow and Jamie and I just melted when we saw her. She just looks so precious with the pink bow. We may not be able to dress her but we can accessorize!

Turning a Corner

Nurse Sally said that Alyssa has really turned a corner. I love that the nurses get excited because Alyssa is doing so much better. We all rejoice when she has a wet diaper, when she doesn't require as much oxygen support, when she opens her eyes. I was talking with Nurse Sally (who has been with her the majority of the time) and we were talking about how good she looks. She is slowly turning more and more pink and her swelling is going down gradually. Her facial features are more prominent and she moves her arms and hands better. In fact she grips my pinky finger. We are trying to get her to suck her fingers but Alyssa jerks her hand back when I move my hand from hers. She is also becoming more alert and responsive. She tries so hard to open her eyes and keep them open when I talk or sing to her. But sometimes when there is an unexpected sound in the room she'll pop her eyes open quickly to look and then shut them just as fast. You can see in this picture that her nose is more prominent. Her eyes look like they are dark blue but it is hard to tell. Every time I close my eyes I see her perfect little face. It is so hard to be apart from her but I know that God is taking care of her and I see it more and more every day.

A Day of Firsts

I can't describe how happy I am!!! In my earlier post I mentioned that today was the day and indeed it was! Alyssa is doing so well. Today she was able to be moved on her side and tummy. The doctor removed her chest tubes! The nurse said she loved her tummy time. When the nurse put her on her stomach I realized that I had never seen her back. I got to see her perfect little butt. But the best part was when Alyssa opened her eyes when I was singing to her. It was truly an emotional moment - today was the first day I saw her with her eyes open. I was crying, my mom was crying and the nurses were crying. It just made me so happy to see her trying so hard to open her eyes to see me. My mom took this picture.

So I thought that was my good thing for the day. But then...I got to pick her up!! The nurse asked if I wanted to help weigh her. I agreed (anything to help my little girl) and felt anxious, excited. It was so awesome. I was so overwhelmed with joy that I was able to hold my little girl. Yes I cried. But it was just so amazing to feel her in my hands. A bonus? She didn't get stressed out and remained stable while I held her. The nurse said that they weigh her every day after shift change so I am going to make sure I am there so I can hold her every day. I am so glad that the nurses involve me. Now I can hold her, change her diaper, put lotion on her and moisten her perfect little lips.
I am so thankful that God is taking care of my little girl. I know He has great plans for her and I am so thankful that He chose me to be her mommy. I am looking forward to more firsts!

Today is the Day

Today is the day you have made. I will rejoice and be glad in it. I won't worry about tomorrow. I'm trusting in what you say. Today is the day!

I woke up this morning ready. I felt positive and filled with joy. I called down and the nurse said that Alyssa had a great night. She was able to go down on two of her blood pressure medicines, her heart rate looked really good and she peed twice!! I was going to stay in the room, take a shower and eat breakfast while waiting for the shift change but then the nurse said that Alyssa had her eyes open and was looking around this morning. I practically ran down there because I haven't seen her with her eyes open yet. But she was sleeping when I got there. I know I will see her with her eyes open and I can't wait! It is just so wonderful to see her move when I talk to her. She loves moving her arms out of her snuglet and the nurse said it is a matter of time before she starts pulling stuff out. That scares me a little but the nurse assured me that it is perfectly normal.

But what gave me so much to look forward to was what the nurse said before I left. When Alyssa is off a couple of the machines that she is on I can hold her! I can't describe to you how much I am looking forward to this. I have so much hope that it will happen soon but in the meantime I am perfectly content to sit by her little bed and watch her. I know there will be a day when I can do so much more for her and I have to keep faith and a postitive outlook. Today is the day!!