Saturday, September 26, 2009


Let me first say that God is so good. He's blessed me in so many ways. Without the gift of Alyssa I would not have this story. I know that He is leading me where He wants me to go. So I am trying my best to keep sharing the story. My mom found tickets for Creation Festival with Jars of Clay, Thousand Foot Crutch, FM Static, This Beautiful Republic, Audio Unplugged and B. Reith. I made business cards asking people to 1) join Prayers for Alyssa Marie on Facebook and 2) visit this blog to read about her story. If you are one of the people we handed cards to thank you for stopping by!! 

God continually amazes me. I've always been a half-full type of person. But I am still amazed at all of the support and encouragement from so many people - thousands of people!! I'll never truly know the impact my little girl has made. Praise God - even though it is the hardest thing I've ever been through.

Sometime in the near future I hope to start an organization to help others. If you know how to do so please email me information! I know that this is a great way to give God glory and continue to keep the amazing story of my little girl alive. My first mini-mission was to hand out 100 cards (thanks to my husband, mom and friend). We even gave them to the awesome bands at Creation Festival (so worth the money to go!!). Mission accomplished. I see them as seeds...what will you do? Take my mini-mission (if you dare)- tell a friend, family member or even a total stranger how great God is and forward this link. If you got a card today pass it on. Let's continue to glorify Him!

Wednesday, September 23, 2009

Hold My Heart

We had Alyssa's service Saturday, August 19. It was beautiful. I couldn't have asked for anything better to honor and celebrate Alyssa's life. It was also hard. But having friends and family with us helped tremendously. Jamie and I were able to read poems for our little girl. I don't know how we did it but we did.

It still continues to amaze me at how my little girl has impacted others. Every day when I check the mail there are cards from people I don't know saying how much she has touched them. Thank you to everyone who has thought of us. Your words encourage and comfort us.

Here is a link to a video we showed at her service.

Monday, September 14, 2009


I always knew the day would come but not like this. We chose to have Alyssa cremated because we are military. We didn't want to bury her in a place that we are not able to visit frequently. Yesterday we went to pick her up.

One part of me was happy; my little girl was going home to be with us. But a large part of me was sad. On the drive back to Columbia I was able to push aside those feelings and enjoy the drive. But driving to the funeral home I became anxious and I could feel my throat starting to get tight. My heart was aching and I felt like I was in a fog. It seemed surreal to me that we were on our way to get our baby.

I cried because I hurt and because I was thankful to have her back. I cried because I can't see her anymore but I also cried tears of joy that I will see her again. So many thoughts went through my head but the one that was the most frequent was "thank you Lord". Without the gift of Alyssa I would not have this journey - as sad as it is sometimes. I am just thankful to have this opportunity that God has given me to share our story. It still amazes me that a tiny little girl was able to bring so many people to their knees.

Saturday is Alyssa's service. I'm looking forward to it but I'm also dreading it. Every step we take makes the situation more real. It's like finalizing something that I don't want finalized if that makes sense. But I guess it also pushes us forward - a direction that we need to continue to go in as hard as it may be. I will post something this weekend after her service. I know a lot of people want to attend but are not able to.

Friday, September 11, 2009


I am writing this simply because I need to. I don't want to but I feel like I need to. I couldn't do it yesterday but after praying I feel like I can today.

I stayed up until 1:00 am watching Alyssa's screen that showed her heartbeat, oxygen level and blood pressure. It was only when her numbers were good that I fell asleep. Every now and then I would wake up and look and her numbers were good. All through the night. Then I woke up to the alarm for her oxygen. I saw that her heartrate and blood pressure had dropped as well. I think I knew then. I sat and prayed. I prayed that God would see her through it like He had all those other times.

But her numbers kept dropping. I prayed again for strength. I went over to Alyssa, sang to her and told her that we loved her. I told her that we would understand if she needed to stop. I told her we loved her and would see her again. I couldn't handle being there anymore so I told my husband I was going to take a quick break. I went into the room the hospital provided for us and broke down. I prayed again. "Let Your will be done". Then I went back to her room.

When I went back there were doctors and nurses everywhere. They were bagging her to get her oxygen levels up. Her heart rate was going down. A doctor asked if we wanted them to do chest compressions. They had asked this the day before and explained that it wouldn't help her. It would only prolong the inevitable. And I knew. I knew that today was the day she was going home. The doctor said that we could hold her. So that's what we did.

I held my baby girl and I sang to her. We told her how much we loved her, how proud we were of her. I honestly believe that she would have kept fighting but I knew she was tired. I knew she was holding on for us. I couldn't make her do it anymore for my selfish reasons.

Right now I'm heartbroken. I know she is with Jesus and it does provide comfort to me. But the human side of me can't help but want my little girl. I know God's plan is perfect but the human side of me can't understand why. This is the hardest thing we've ever been through. Our little girl has touched so many people and I am so thankful that God chose us to be her parents. I am so proud of my little girl, my Alyssa Marie.

God doesn't make mistakes. Our little girl was never a mistake, the way she was born was never a mistake. As hard as this is I know it isn't a mistake. We got 11 wonderful days with our little girl. I choose to remember those wonderful moments with our angel. But it is also those wonderful moments that make me break down.

Please continue to pray for us. Please pray for those who are angry and pray that they don't turn away from Him. I will probably do an update later next week. We plan on having a memorial service for her next weekend.

Alyssa Marie - we love you dearly.

Thursday, September 10, 2009

Putting up a good fight

I don't think the doctors expected Alyssa to make it this long. The night was promising - all her vitals were strong and good. I was able to sleep (not very well but enough). But then I woke up to the sound of an alarm and saw that all of her vitals are down. She is again at this point where there is nothing else to give her and it is in God's hands. I look at her and admire everything about her. Her little hands and feet, her perfect lips. I can't help but wonder if I will ever get to see her grow up and it breaks my heart. I keep reminding myself that there is a reason for all of this. But the human side of me is getting tired of seeing my little girl fight so hard to live. It hurts to see her the way she is. All I can do is pray - whatever the outcome.

Wednesday, September 9, 2009


We were called in earlier. The doctors have done everything they can for our little girl. What happens is in God's hands. I am typing this from my phone. I know God knows best but my heart aches with the thought of not seeing my little girl. She is giving a good fight - it is so hard to see her like she is. The doctors and nurses all did everything they could. God has a plan and I need to ask what do I need to learn from this and not why. I pray God gives us peace and strength. I am so thankful that God chose us to be her parents. I am so blessed from this experience. I am so proud of my little angel and thankful for all the moments we've shared. Thank you all for your prayers.

Tuesday, September 8, 2009

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!


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.

Monday, September 7, 2009

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!

Sunday, September 6, 2009

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!

Saturday, September 5, 2009

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.

Friday, September 4, 2009

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!!

Thursday, September 3, 2009

Sigh of Relief

Thank God for a better day. Alyssa got so much better in the afternoon. In fact, the nurse said that she would say that she is stable for now. Of course this doesn't mean that she will remain so and I know that we will be hit with something else eventually. But for now I am going to focus on the fact that we are making progress and we are on the right track! All of the problems that Alyssa faced this morning seemed to be fixed by the afternoon. Blood pressure? Good. In fact the nurse was able to decrease one of her blood pressure medicines when we were down in her room earlier. Heart rate? Still a little high but not as bad! I can't help but be so proud of her when the nurse tells me that she is down on her requirements. Plus she does not have to be under the phototherapy light for now.

It is amazing to see God working in her daily. Today seemed so long and I was extremely distraught. I felt guilty leaving her when she was doing so badly but I noticed that her blood pressure and heart rate were off if I kept stimulating her (talking to her, touching her). So I decided to back off and let her just rest and it seemed to do the trick. In fact, the nurse said that she became more responsive (and I got to see it tonight) and she even opened her eyes and was looking around. I have noticed that she is sucking her tubes more and moving her hands more. I can't describe how happy I am to see her doing these things.

Tonight, the nurse asked if I wanted to change her diaper and let me tell you. I was extremely anxious and nervous doing it. She is just so fragile and I didn't want to mess up any of her progress but it turned out to be ok. Here is a picture of me doing something mommy-ish for my baby!

The Honeymoon is Over

I got a call today from a doctor in the NICU at 5:45 to let me know that Alyssa is not doing well. They are having problems stabilizing her blood pressure and heart rate and they are maxed out on the blood pressure medicine that they are giving her. The doctor said that a lot of preemies start out good - the Honeymoon Period as she called it - but then start having a lot of problems. She said that it looks like our Honeymoon Period is over and now the real battle begins.

I know that God is taking care of her and I have faith that no matter what God is with us. And it is so inspiring and encouraging to see my husband pray over her and read the bible to her. I felt pretty hopeless this morning and the only thing I could think of was getting a pastor to pray for her. They called in the pastor and he came from his house to pray with us. When I thanked him for coming out he thanked us for involving him. It's amazing how much our little girl is touching so many people and I try to keep that on my mind when the road gets rough. I know there will be a lot of rough turns and I know that God is there with us all the way. No matter what I will turn to God for strength and peace. This song has been going through my head all morning and it is how I feel.

God, my God, I cry out
Your beloved needs You now
God, be near calm my fear
and take my doubt
Your kindness is what pulls me up
Your love is all that draws me in
I will lift my eyes
to the Maker
of the mountains I can't climb
I will lift my eyes
to the Calmer
of the oceans raging wild
I will lift my eyes
to the Healer
of the hurt I hold inside
I will lift my eyes, lift my eyes to You

The song is by Bebo Norman called "I Will Lift My Eyes". If you haven't heard it before check it out. It is such a great song. I will update my blog in the morning and at night. I know a lot of people are anxious to know how she is doing and I will do a better job of updating and posting information. Thank you so much for your concern and care for our little girl. I thank God for each and every one of you.

Wednesday, September 2, 2009

Awesome pictures

My husband's cousin did these for us and I just love them! They are absolutely beautiful! We took these today. I absolutely love the one of Jamie...when I took the pic I was planning on putting "Daddy's Little Girl" and it made me so emotional to see it there. Great minds think alike! Thank you Nicky!

Chasing Our Tails

A level goes up; a level goes down. Every time we go to see her it's always the same. They had to increase this but they were able to decrease that. The NICU nurse with her last night said that it's very much like chasing our tails. It will continue to be this way for awhile, but every day I feel like God is strengthening me more each day. I can't explain the peace and joy I've been feeling so much of lately. I just feel so comforted knowing that so many people are praying for her and that she is in such good hands. I often imagine as I'm looking at her just laying there and I want to hold her and touch her so badly that Jesus has her in His arms. It gets me quite emotional but it just makes me feel so much at peace.

I think the hardest thing for me and for a lot of my friends and family is that there isn't much we can do physically for her. We're on the sidelines cheering for each small victory and coming together for the bad times. It still amazes me to see and hear about the number of people who have joined my little girl's team. If you are on Facebook, check out the group Prayers for Alyssa Marie. My friend started it and the growth of this group just amazes and humbles me. I thank God so much for every person who has reached out to us.

Here is a picture of our little angel.

Tuesday, September 1, 2009

Another Day

I am so thankful for another day. Last night was hard and the only way I was able to sleep was drug-induced from my pain medicine. We went down and saw her this morning and spent over an hour with her. It's so hard to see her just laying there when just yesterday she was moving around (always that left leg!) and sucking on her tubes. They said that she needs to conserve all the energy that she has. I know so many people are rooting for her and praying. The nurses and doctors all say that she is a fighter and she is hanging on. I can only hope and pray that she will continue to do so.

The good news is that her bilirubin levels are down! So as of now she does not need that second risky procedure. Thank the Lord! We still have to have surgery to unblock her lower intestine but the doctors are going to wait to do so until she is fully stable from last night's surgery. They feel that the next surgery will go better because they do not have to lay her on her side like the did last night's surgery. Once this is fixed she can be given food and start gaining weight. Right now she is on an IV.

I will continue to post on my blog when we get updates. Again, thank you for your prayers and encouraging thoughts. I hear so many stories of people who have gone through what we are going through now or survival stories of babies smaller than our little angel. It gives me hope and strength.