Day 19: No News is Good News

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

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.

Day 9: Malena’s First Graduation

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!

One Week Old!

Malena is doing great again today. Matt and I knew she had a rough afternoon with her feedings yesterday so we decided to not visit her but let her rest. Matt went back to work today. I went to visit Malena at Noon. One of the nurses said to me on the way in “Its great to see her with out any breathing tubes.” I thought she mean the tubes from earlier this week. I was so surprised when I saw Malena. She had no more tubes in her nose or mouth. For the first time I could see her entire face! She is beautiful! I held her for an hour. I didn’t want to leave her. I enjoyed every minute.

As I was holding her they explained that they did an X-ray of her intenstines. They showed it to her surgeon. The surgeon confirmed that there were no huge issues with the placement of her intestines. So the NICU doctors decided to put her back on feedings. Only this time very small amounts at first and we are going to see how she does. They had done different things like feeding tubes and checking to see how much food is left in her stomach before. They decided this time to let Malena let us know how the feedings are going by vomiting and dirty diapers etc.

So I was lucky enough to be apart of her feeding at 2. I called Matt and told him the news and he left work to come and be there. We practiced breastfeeding. Malena did great. Then I fed her the small amount of food. She was so so so hungry. The nurse said that the amount of food is so small she almost feels like she is just teasing her but hopefully she will do well and increase her amount tomorrow.

I was so excited about her progress that I forgot to take pictures. So for today’s post I will just put up my current favorite picture of her!  We’ll take more pictures tonight so you can all see her without tubes.

Annabelle

Day 6 and 7

Today Malena had a bad day. Malena was expected to have several weeks of bad days and we had not seen any of those until today and that is just fine with us. Because I was feeling better and my cold had subsided, I was able to hold Malena today. I was not able to feed her a bottle like Annabelle had done yesterday because she had vomited a few times because of it. Having Malena accept feedings is all apart of a CDH baby. Her intestines and organs have been surgically replace back into her abdomen and because it was replaced by a doctor and not naturally, her intestines will now need to learn how to process things. I can begin to express my feelings into words on how it felt to finally get to hold her little body in my arms. Because of all the wires and tubes I was a little nervous in handling her but I did just fine. The moment felt so natural and a feeling of fatherhood was solidified. I had intended on going back to work today but because she was having a difficult day I decided to take the rest of the day off. It is going to be so hard to return back to work tomorrow and concentrate while Annabelle visits her. I know that I will feel like I am missing out.

Matt

Day 5

I have been trying to pump breastmilk every 3 hours for Malena. So last night I decided to go to Malena’s “care time” at midnight since I knew I would be up pumping already. When I showed up at midnight the nurse told me they turned down the Nitric Oxide as low as they could go. She said that they might get rid of the NO or Nitric Oxide all together. I got really excited because I knew that was good news. Malena was so active, awake and responsive because they had lowered the NO and her pain killers. It was so fun to see her. When I came back to my room and told my Mom she really wanted to see her, so I suggested we go again at the 4 AM care time. When we walked in at 4 AM I saw they were working on a machine. The nurse told me they are taking away the NO machine and that Malena might be ready to have her breathing tube taken out. I got so so so excited. I called Matt when we got back to the room. He was half asleep but understood the message.

In the morning I rushed to get ready for the 8AM caretime. When I showed up our head nurse Kaelee told me that they were going to be taking her breathing tube out this morning! I asked her when because Matt wasn’t there yet. She said within the next 30 minutes. I called Matt and he was already rushing to get here. Matt got here just in time. He woke up with a cold and so he got a mask when he came in the NICU. Our nurse Kaele asked him if he was sick and told him not to touch Malena. Of all days! The took her breathing tube out and she was so much happier after all those tubes were gone. They did leave one for a feeding tube to her stomach but she looked so much better with only one tube. I had to leave to go pump. Mark and Debi went in to see her and they were so excited because the nurse asked her if they could hold Malena’s hands while she took the IV in the belly button out. They got to hold her hands for a good 5 minutes. It made their day. Then Jim and Christiane went in and spent a long time with her as well.

Then the moment I thought wouldn’t come for weeks came today! I got to hold Malena for the first time. We need to hold her for long periods of time because short holds would be too much stress on her little body. It was wonderful. The moment every Mom looks forward too. My parents got to hold her for 30 minutes each as well since they would be leaving for Utah tomorrow. It was a great afternoon. Poor Matt went home to take a nap because of his cold. He was so disappointed that he couldn’t hold his own daughter. He was happy we all could hold her but he felt like he was missing out.

I got discharged from the hospital today as well. I was ready to get back into the outside world. We all went to Mark and Debi’s home for a Sunday dinner. It was a great break for me. I think we all needed some time away from the hospital to enjoy each other’s company and to spend time with Zoey.

Annabelle

Day 4

This morning Zoey and I arrived at the hospital a little later in the day but I was able to join Annabelle for the 12 O’Clock visit for Malena. Annabelle was nice enough to let me change her diaper and take her temperature. We are proud to announce that the diaper weighed in as the heaviest diaper of the day in the NICU (urine). They do weigh all of the diapers to ensure that everything that they are putting in these little ones also comes out. Having a full diaper is a great sign and lets the nurses know that Malena’s lower extremities are functioning. Today is more of a hands off day for Malena so that she can use all the energy that she has to recover from the surgery. I will say that Malena was trying so hard to open up her little eyes when she heard the sound of my voice. Annabelle are SO very grateful to have a CDH baby that is at the top of the CDH spectrum. I never thought I would be this excited to have two little girls. I am so proud and honored not to mention in love all over again.

Matt

Surgery: The Little and Big Things

Yes Malena had surgery today, but first I want to talk about the little things that made my day today. In the NICU they have “care times” it is when the parents can come and help change diapers and take her temperature etc. The times are 8, 12, and 4 round the clock. Matt and I were both there this morning at 8 for her first “care time”. She opened her eyes a bit when she heard our voices. It was so exciting. When we came back for the 12 o’clock time she opened her eyes even more. The nurse said she hadn’t moved or opened her eyes until we showed up again. It made Matt and me feel so happy that she knows when her Mom and Dad come visit.

Now, the big things. Malena’s surgery. They pushed the surgery up from 3 to 1:30PM. We spoke with the surgeon and the anesthesiologist. Signed consent forms and off she went. Matt’s parents and my parents and Matt and I all sat in my room and waited. We all handled the stress a bit differently. Some of us wanted to talk, some of us wanted to watch movies or TV but we all were anxious. I wanted to sleep. We heard from the surgeon 5 or so.  She said everything went well. They amazingly did this surgery through 3 small slits instead of one large incision. It’s incredible especially because the incisions are so small on an already small body. It was all good news. The surgeon did tell me to get lots of rest because I would be taking her home soon. J  Not sure when soon is but it was a hopeful comment. Matt and I went to go see her after surgery and she looked great! She was just zonked from the rough day she had. I felt lucky to have those moments this morning when she opened her eyes and said hello. Her fight is still not over but she has done well so far. Go Malena, Go!

Annabelle

Day 3

Today Malena is scheduled for surgery. The doctors only perform surgery on babies that are stable and strong enough to endure it. Being only three days into this, this is a very good sign as to how Malena is doing. The Nurses have informed us that we should not get our hopes up to high because this is the moment where the roller coaster can begin to descend. The surgery is scheduled for 3pm today. We will keep you all updated.

Before surgery Pictures

Here we go!

Day 2

I was able to see Malena for the first time today at Noon. She was a whole 24 hours old. I got to touch her legs, head and she grasped my finger with her tiny hands. I had only seen pictures for the first 24 hours and she is even more gorgeous in person. She is a solid baby especially compared with the other babies in the NICU. I met a lot of doctors and nurses in the NICU and they kept telling me she is doing so well. They say she is doing the best she could be with a CDH baby. I couldn’t stop smiling. I was so excited to see her. I know a lot of people were concerned it would be too much for me emotionally but I was just so excited to see her and touch her. It became even more real that I had a new beautiful baby girl once I saw her. I am excited to see how well she does over the days and weeks to come.