Short update

I can't say much. Chanda and I have had to worst day ever here... Her morning try off ECMO went so wrong that we haven't stopped crying since then. Her poor little lungs filled with blood and we just about lost her.... They have put Ireland on a whole new ECMO machine now and we've really been told that if they can't get her off of it "soon" that we aren't looking at a very good outcome. It sucks that the machine that is keeping her alive is also her worst enemy because of the blood thinners that have to be used with it she is just bleeding every time they try to take her off. We are just at a lose right now. We still have hope but now the fear is very very real to us. She did very well on the transfer to the new machine and they were going to use less blood thinners to try and curb they bleeding and for now it seems like it has worked. They next 3-4 days will be hell, but whatever the result I love Chanda more than anything and we will be there for each other no matter what. Hope they can just let Ireland rest up and pray the next try will be the one.. LOVE YOU IRELAND!!!!!!!!!!!!

Being corny/sentimental

I have not been very good at posting on this blog lately. I've been tired and am constantly feeling a nervous wreck. Today we climb that mountain of permanently getting off ECMO (her life suppport/safety net). I'm scared and excited for her to be done with it. I really pray that we're not asking too much, too soon. If nothing else, Ireland has proved to be one hell of a fighter. She is amazing to me.....One of us will post once we know how well she did. Her trial went well last night with them just having to turn up the ventilator. Imagine that once she is off this ECMO that it'll do wonders because she won't be on all those nasty blood thinners anymore. .....Also, so unlike me to have such a small post :), but I just wanted to say that I'm so thankful to have a hubby like Mikey. He keeps everyone informed and has just been awesome to me throughout all of this, I'm going to hate when he goes back to work. He has been what I need on a daily basis and I'm just really lucky to have him. And then, I want to say that Tristan has been great too. He finally showed some major emotion last night and it was time. It's hard for a young teen to understand all of this and he's just ready for Ireland to come home. ....I love all of my family but this little immediate family of mine, Mikey, Tristan and Ireland...well, I'd give them the world on a platter.

thought morning would never come

Well our Ireland is still keeping Mommy and Daddy crazy. We went to see her around 830 last night and poor thing had quite a bit of bleeding going on from her intestines silo. Nurse changed the gauze pads and everything, poor thing. We wanted to spend some time with her cause with the surgery earlier yesterday and then they went back in to work on the blood loss, we didn't feel like we were there for her much. Well as things go at the NICU, we were there for about 10 min. then we were told that another life flight baby was coming into our bay and we would have to leave. AGGGHHHHHHH Just want some time with my little girl!!!! So we decided to go to the hotel and try... and I mean try.. and get some much needed rest so we could be strong for Ireland in the morning...10pm phone call from the DOC. Ireland's bleeding was much more than he wanted to see and he would have to go back in and try to find and stop the bleeding.. Now this would be the 3rd time in less than 12 hrs our poor sweet heart would have to go under the knife.... I hope so much that she isn't in pain and her little body can handle all these drugs they have to use on her. I feel like she is fighting so hard for her daddy and mommy and I just wish I could trade places with her. No parent in the world would want to see this happen to there little precious girl and I pray I'm not asking to much of her. She has given this daddy so much in such a small time that I can't wait for the days and months ahead. Sorry got off on a little tear fest moment there...Back to my baby... doc called back around midnight and said he found a small cut/tear on her intestine and a bleed on her stomach wall. He put a small stitch on both and it seemed to keep everything as dry as can be expected for what she is going through. Getting ready to see her this morning and will update all after wards. Lots of love to my brother in law Phil... He wishes so bad he could be here for Chanda and just know Phil you are with us through all your love and phone calls!!!!

well long night

Little Ireland is just fighting and fighting. After her surgery her belly was swelling too much and the doc decided to go back in and open her belly cut to let some of her "guts" out to release her pressure. When he got in there her belly was full of her blood bleeding from her abdominal wall. We knew this was a big risk because of the ECMO machine she has been on blood thinners the whole time. So anyway, she is doing well and they have taken her "inners" out of the belly cavity and they being held in a wrap to keep from drying out. They will keep them this way so they can keep track of the blood lose and it will also help her lungs have the most room to expand to get her off of ECMO in the next 24-48 hours... This little girl just keeps us on our toes for sure!!!!!!!!!!!!

2 steps forward... of course a step back..

Well the Doc called us back up to the room during r lunch and informed us that they were going to have to open up her belly cut to relieve the pressure. He had thought at first that it would all fit and would be fine but after a hr it was swelled up pretty good and he was afraid it would start cutting off her blood flow. So they will just open back up the cut and let some of her innerds come out to relax the pressure. They will cover it up with a plastic wrap and in a few days slowing start getting everything back in.. Not a big deal... I know I'm saying having your guts out is no big deal right!! So hopefully we will get back in to see her in a half hr or so and see what has happened now!! But really no worries.. she's my tuff little girl... here are some before and after.. and later I will have some after after pics!! Mikey

One battle won so far!!!!

Well they moved up the surgery on us. Called at 830 to say it was at 10!!!! good thing we were down in SLC already heading that way. So it was good that it was sooner cause Chanda and I would have just been a wreck. Anyway Surgeon just came in and said the surgery went great.. she had just a small hole and he just sewed it up and everything fit back where it was suppose to be!!!. Chanda and mine tears are still running but tears of joy. we still have a fight ahead but today is well and we just thank everyone from the bottom of our worn out hearts... love to all..

PRAY

I am a basket case! I looked at all of our pics of Ireland tonight and our little girl has come a looong way! I forgot how huge and bloated she got on that first day of ECMO. My word!!! She was twice as big as she is now! .....I looked at what I'm calling the "many faces of Ireland" because she looks so different each day! And man, she is one beautiful baby. I am glad that she is relaxing now (although the fact that she needs so much sedative and morphine to get there sucks), but I really enjoyed that day when she was just kicking around and looking at us. I realized how much I love her that day. And ya know, she so knows who we are. We can hardly speak without her getting excited. And man, she knows who daddy is. Jealous as I am, I am pretty sure she wants to know where he is first........Today, Ireland started to wake up from all of her sedatives and such and gave us another peek of her beautiful eyes. You could tell that she was definitely on some heavy stuff but it sure was nice to look at her and have her look back. Too soon, it was decided to up her morphine and she was out again.

As Mikey posted before, she's having her surgery tomorrow. She is still on the ECMO. ....I have faith in the doctors and I pray for the strength to think positive come the morning. I want to be strong for her and whisper encouragement before the afternoon comes and with it, the surgery (3:15 our time). .........I have now pumped 3 times with no success. I guess its the stress. I mean, I get a drop or two that sticks to the damn suction cups and that is it. I've never really given a hoot about breast feeding but seriously, this was the one thing I felt that I could go out of my way and give to her. I can not for the life of me stop crying. I'd say my breast are shriveled and useless but anyone who knows me, well....they're far from shriveled and they hurt as if the milk's there and just won't come out....I don't know, Mikey says I just need to give up tonight and sleep.

I can't even call the NICU for an update...Mikey has to. After all the blogging that I've been doing for months, you'd think I'd be excited for this surgery and not such a ball-bucket/cry baby at any given moment...Mikey just called as I'm writing and the nurse said that she had to have some more morphine tonight, Ireland has to just be restless and sick of all of this, and other than that the nurse said she's nice and pink and resting.

Anyway, we have a room at the hotel for tomorrow night, Tristan is staying with friends and we'll be as ready as we can be tomorrow. I'm totally nervous and scared. I feel like my heart is just being slashed open and I wish we could just trade places. I so don't want her to hurt and I just wish she were home and that we'd never heard of CDH.

Totally can't write anymore and need to go to bed. Please pray like crazy for all involved tomorrow...Ireland, especially.