Tuesday, August 25, 2009

Sucky day

It really wasn't that bad, just a low I guess. Little Ireland had her little eye masks on that Chanda made all day to keep her from moving her head around. So we couldn't see those great blue eyes looking at us. Plus she was moving around way to much and we were all worried that she was grabbing for her two lines that go into her heart. So they had to start to sedate her but of course every time Chanda or I got close to her side or talk a little louder she would know we were there and start moving around a bunch more causing her BP to go up. Finally they upped her morphine and she was a zombie after that. Felt like we didn't get to spend what we would like to call quality time with her today, but when I sit back and really think about it any time I get to spend near her is great, great time. I realize that some of the good people who follow our blog have lost their little angels and that my whining about this is nothing compared to what they have gone through. So with that said, I will no longer bitch about any time I have with my daughter knowing that others don't have that chance. See this blog is good for something. It really puts things into a different light. On another note, today there was a new baby in Irelands area. A little boy named Joe. Guess he was born last night. Well we didn't see anyone with him which we thought was sad but thought maybe he was life flighted in and his parents were someone else. Well around 2ish his parents came in of course looking sad to see their little bundle of joy with vents and tubes. As fate would have it this little boy has CDH. I felt so much for them because they didn't know anything about it!!!! I guess this was a very late case of CDH because it was never found on her sonagrams. He was born and then they found out. Chanda and myself got a moment to talk with them and hoped to share with them what we have found out since we knew at 20 weeks. I can't imagine knowing what I know now and having this happen out of the blue. We shared what we could in the little time we had to talk and hope even the littlest bit we could share will help them at least through today... Time for bed here. Sending out love for another precious baby, Josheph, has he fights this demon called CDH. Also, would like to mention little maximus is having a very hard time after a pretty good start and my heart goes out to his mom and dad. Need anything please hit Chanda or I up... Good nite Ireland!!!!


  1. I'm sorry you had a bummer of a day, but I'm also happy to hear that you were able to put it into perspective. The same thing happened to us while at Duke--Bodee Vierig was born with an undiagnosed CDH and we had to fill in his parents. They have since become very good friends, and as luck would have it, live about 30 minutes from us! Cherish this family as a gift of solidarity in this fight against CDH. Ireland's life already so much purpose--today, it was that your family was around to ease the fears of Joseph's family.

  2. I agree with the above post. Joe's parents are very blessed that the two of you were there today and could offer some information and comfort to them. Sorry that it wasn't a good day with Ireland but you should feel good about the fact that you were there for Joe's family. Will be thinking of you all today as they attempt to take Ireland off of ECMO (if they are still doing that). Look forward to seeing updates later today here or on FB. Love and prayers to you all...especially Ireland.

  3. I know what those parents are going through of little Joe, for that is exactly what happened with Ian. From premature birth, to emergency c-section, to a life flight and not knowing what the hell CDH was. I learned very quickly. Tell his parents I am here if they need somebody to talk with. It is such a blessing you can offer information and comfort to Joe's parents.

    Hope Ireland is resting and getting stronger. Before you know it, you will be able to talk to her and touch her and monitors don't go off. She needs to rest while on ECMO and get stronger, so she can get closer to her surgery. Praying for a GOOD day for Ireland!! Hope the ECMO weaning is going good.

    Hugs, Tracy

  4. We are thinking and praying for you guys. We know how difficult it is. Craig and I are amazed that, again, a baby is born without the pre-diagnosis of CDH. We had a couple in the NICU with us when Kaden was born that did not know that their son had CDH until he was born. I saddens me deeply that this defect seems to be so much more prevailant than ever. We have to change it! We will pray for baby Joseph as well, and his parents--God bless them:)