Today is National CDH Awareness Day. And we feel so blessed to be able to say that our CDH baby is doing so well. Malena has been home for almost 2 months. She will be 3 months on April 13th. By looking at Malena today you wouldn’t know she was in the NICU for a month. Her only reprocussions from the hospital are her small scars and a little bit of acid reflux. Other than that she is a normal baby. We almost forget all those long days at the hospital. We know that not all CDH babies do as well as Malena. And we are thinking about all those families who’s CDH babies have earned thier angel wings. Please wear turquoise today if you can or just tell people about Malena’s story and spread the awareness of CDH. For a refresher on what CDH is here is a link. http://www.breathofhopeinc.com/

Here is an update on our family. Matt and I decided its important for me to continue working on finish my Master’s degree. We decided that since Malena is doing so well that I could go back to work. My first day back was March 16th. Zoey and Malena go to Carola’s house for daycare where they have fun and are loved by all the Dal Moros. We feel so blessed looking back over the scary past few months and can’t believe how far we have come.

I apologize for not updating this blog more often. We are so busy with our girls, school, and work. Just know that no news is good news. I will try to make an effort to post pictures and updates at least once a month. But hopefully more often. 🙂

Malena smiles all the time.  It doesn’t take much to make her smile. I believe even though she is so small she is happy to be alive despite everything she has been through. We love her so much. We dedicate this day to Malena’s strength, courage, and fighting spirit. She lives up to the “Couture” name.

Annabelle

We Believe In Miracles

February 9, 2010

And here they are!

Roughly three months ago we were told that our daughter Malena would be born with a birth-defect and the chances of survival would be 50%. Today we brought home our little Malena. The Doctors have commented time after time on how they have never seen a CDH baby with so little medical complications. We are definitely blessed. Not much time to post a detailed write-up of the day, I have to go play and enjoy our two little girls. Just know that we would not be enjoying this night together as a family if it weren’t for all of you and your prayers. Thank you all. Good night and look for a detailed post in the future.

The nurses and doctors have been talking about how sometimes with babies and eating “it just clicks”. This is exactly what happened with Malena this weekend! She just started eating more than her minimum 2 ounces and she began consistently waking up for each feeding. She no longer has her feeding tube in and is doing great!

So this means she will be able to come home soon. The nurses always say that the “broviack” will be the last thing to come out and she will be able to go home. What is a “broviack”? Great question…it is like a direct IV line they put into her veins during her surgery weeks ago. As NICU parents we know all the lingo. 🙂 Well they took her “broviack” out today!

We are so excited to bring her home. We can’t wait for Zoey to officially meet her. It will be the moment we start to really feel like a family of four. Malena will be 4 weeks on Wednesday. It’s just amazing what she has done since she was born.

The next hurdle is Malena’s first year. All babies are at high risk of getting sick their first year but CDH babies are even more at risk because they do not have two full healthy lungs. Even though Malena looks normal and is breathing room air, any respiratory illness could have a serious impact on her. So for the first year especially during flu season we will have to be careful and keep her isolated so she will not get sick. This will be a challenge more for Matt and I then Malena. We will do anything to do our part since she has fought so hard through her challenges!

There is no way we could have done this without all of your support. Thank you again!

Annabelle

Malena had a great day today! I have been in to the hospital at 8AM and then at 2PM the past two days to help Malena practice eating. They have been feeding her through a tube after trying to feed her from a bottle or after I breastfeed. The reason being is that she only eats half of the amounts she should. This morning was the same story I breastfed Malena and then they fed her through the tube with the remaining amount.

Bu then this afternoon she did something she has never ever done. Two full feedings in a row! I breastfed her at 2 and then tried to give her the rest through the bottle. To my surprise she did a full feeding. Then when I called to check on her after her 5 o’clock feeding she took the same amount from a bottle! Usually she would get a tube feeding between bottle feeds to let her rest. She was so hungry when I saw her at 2PM. I think she is getting the hang of this eating thing! I know that sounds like a small improvement but in the NICU small improvements are huge things!

Malena also reached her birth weight again. She is a few grams over 6lbs 6oz.

We are proud of her…Enjoy some new pictures.

Annabelle

We apologize for not updating our blog for awhile. It is just because Malena is just working on eating. Not much has changed. She progressed so quickly with her surgery and her breathing that we thought she would just pick up eating really quickly but Malena has other plans. She has just been really sleepy over the past week and a half. Just over the past few days she is more awake during the day. She can’t come home until she eats consistently and gains weight. She gets a bit better at eating more everyday but she is only eating and ounce on her own when she should be eating two ounces.

It is normal for CDH babies to struggle with eating. It will just take time. My guess would be maybe two more weeks or so until she can come home.

So we didn’t mean to worry any of you by not posting. There just isn’t much to report. We will do better at posting. Thank you all for your continued prayers, phone calls, texts, cards!

Annabelle and Matt

Day 10: Sleepyhead

January 22, 2010

So not much to report for today. Malena is still sleepy. The nurses say she is not interested in bottle feeding because she is so tired. So they put a feeding tube down her nose into her stomach again. A doctor in the graduate NICU called me today to tell me just how amazed Malena is doing and that she will becoming home soon. Well no one tells me what soon is….

My mom sent me two pictures today in an email. One of Zoey at 2 weeks old and one of Malena. I think they look like sisters. Let me know what you think. Malena on top and Zoey below.

Today Matt and I went to the NICU to visit Malena for a while. We spent a good 3 plus hours there. We fed her twice. She did really well on her small feedings yesterday that today at 2PM they doubled her feedings. She has been so sleepy the past two days. I haven’t seen her eyes for a while. She fell asleep eating her lunch today she was so tired.

I was worried they might put her back on oxygen but when I came in today she still had zero tubes on her face. We did take pictures today.

We got a call from the nurse around 6:30PM today. She explained that Malena had been moved up to the Graduate NICU this afternoon! This is such great news. It made Matt and I a bit nervous because we know that she will be coming home soon and we don’t have the house quite ready yet. We thought we would have a month or two to figure all that out but no Malena is calling the shots and she wants to come home ASAP.

The doctor stopped by to talk to us when we were holding Malena. He added his comments on how amazing she is doing. He said something I liked. “She told us from the beginning. You know babies who come out sick are sick but she wasn’t that way”. She has been a fighter from the beginning.

By the way we love reading all your comments. Melanie, keep em coming. 🙂   We haven’t had much time to reply to all of you but know that we appreciate your support and we feel your love through your comments.  Thanks!