Tuesday, January 29, 2013

Twins Update and New Pictures

This current week started off very similar to last week (last week being the babies' second week in the NICU). Last Monday they attempted to take Madeline off the vent. This was a very stressful day. They took the breathing tube out at about 2:00 in the afternoon. I was on edge all day. She did well but you could tell she was just not quite ready. She would get comfortable, fall asleep, and forget she had to breathe on her own. About 2:30 that morning the doctor called and let us know they had to put Madeline back on the vent. We were disappointed but not really surprised. She had not been taking her feeds very well the few days prior so the new plan was to let her rest on the vent over the next week and get her tolerating more milk (through her feeding tube that goes from in her little mouth into her stomach). Over that second week you could tell she was gaining much more strength. They were able to increase her feeds by 1 mL every 12 hours and they started to slowly turn the settings down on the vent to wean her off.

     So yesterday they decided she was ready to give it another try. Everyone had a good feeling! This was going to be it! She was ready to breathe like a big girl all by herself like her brother has been doing for over a week now. So out the tube came. To start, she did fabulous. She finally understood she has to do it herself. A few hours later though, they started to become concerned with a sharp kind of wheezing sound she was making as she breathed. This was called stridor. This sound was not coming from her lungs but from higher up in her throat around her vocal cords. They told us her throat and vocal cords were swollen and inflamed making it difficult for her to take nice deep breaths. It was like she was having to breath through a straw. They started her on some steroids to help decrease the inflammation. You could tell over time it was taking a toll on her. She looked miserable. Her little shoulders were just constantly going up and down and it looked like she was struggling so hard to take breaths. She was fighting for it though. Poor thing it was like she finally knew what she had to do, and when she tried to do it, her little throat wouldn't cooperate for her. At about 10:00 that night (after they received her blood gas report from the lab) the doctors decided the tube had to go back in. Jason and I were crushed. She fought so hard all day to do it on her own.
Madeline while she had the breathing tube out for the day

     Today I met with the doctor about what the plans are now. The new plan is to let her rest for a few days in hope that the swelling will start to go down around her vocal cords. When the swelling subsides they will start an new round of steroids BEFORE they try to take the tube out again. Once she has two doses of steroids in, they will take out the tube and continue with more steroids. The doctor's think this will do the trick. They have reassured me that they have no doubt she will be able to do this, it just may take some time. They have said she is still so young, and even though Mason was able to get off the vent fairly quickly, Madeline's course of on and off the vent is very typical of a preemie. This was very reassuring to hear. So everyone please pray that this upcoming week goes smoothly for her. We can't wait for the tube to come out so we can see her little personality. I have a feeling she is going to be a feisty one!

     Mason is now off of ,not only the vent, but also the CPAP machine. He is now just on normal humidified oxygen through a cannula in his nose. He is up to over 20 mL of breast milk every three hours. They are actually fortifying my breast milk with extra calories to help him grow even more. They also just started doing this with Madeline's breast milk as well. We've got to fatten these babies up! Today they are removing Mason's PICC line. So that will be one less line attached to his little body!
Mason is such a happy little guy. He loves to grin (even though I know he's probably not really grinning at anything specific but it's still so cute to see). He is really starting to open his eyes up and look around more often. He loves skin to skin time with us. Even his little cry when he is upset (usually when he spits up) is the cutest little thing I have ever seen. And trust me this is the most puking kid I've ever come across. They have had to start giving him his feedings slowly through a pump over an hour and a half in order to help him not spit everything back up.

   Jason and I are holding up well. He returned to work on the second week but was able to change his work schedule so that he works four days a week and can be up here every Wednesdays and all weekend. My mom has been staying with me up here on days when Jason isn't here to drive me back and forth to the hospital from where we are staying. But I am officially released to drive again now! Jason and I have started to go out to eat every Saturday night, partly to stay sane, and partly to celebrate our little ones fighting through another long week! I don't think I'm much of a fun date for Jason though. Last Saturday we went out for sushi and before they even served us I was fighting back tears. I just felt so guilty being out enjoying dinner while our little ones were in the hospital attached to a dozen lines and monitors. But I know we have to also keep ourselves sane through all this. So I pulled it together and tried to make the best of it for the rest of the dinner. Can I say that sushi and a glass of wine was probably just what I needed. It has been MONTHS since I have been able to have either of those!!!

Kisses for my Madie Moo
Me and my little Mase Face
Our first family picture! 

Look at those big eyes! Pretty little Madeline.
Love this picture of Mason. Have you ever seen a cuter little face?

Mason and his milk gut after a feeding! 

Sweet little Madeline

My favorite time of the day! Love holding these little ones. 

Madeline's first baby doll! 

He looks so sweet, but he probably just got done puking every where! 

1 comment:

  1. As I just wrote to another friend whose 7 mo. old grandson was born with a disease, had a colostomy, had it reversed and now been diagnosed with low muscle tone, the Devil hates it when the prayers of the Faithful are answered by God. Here I thought Mason was going to have the problems and now he's off the vent and Maddie-Moo is having her difficulties. When God brings you to it, He will bring you through it. What the doctor is saying about Maddi-Moo makes perfect sense. We keep forgetting that she's still supposed to be in the Oven and we would not know if she was having any breathing problems. I'm glad you and Jason are getting out of the hospital. There will come a time when they are home, all is well, Grandma is out of town and you will be crawling up the wall to get a sitter and go out with your husband while Maddi-Moo and Mason are teething and screaming. :-) When the times get scary, give it to God and think how wonderful it will be when the 4 of you are home and health and peace reign. They are first and foremost in my prayers as well as their parents. Love ya!