Monday, August 24, 2009


This is my favorite picture. If you haven't already, make sure you read Mikey's post from last night, just below this one. He added several pics and wrote beautifully about her first time opening her eyes and also touched base on things we can expect later today. I am up because I am hearing the call to feed her a la breast milk. Frustrating as it is, I'll continue. I managed to eek out 2ml before bed (this is double what I've previously had) and just before beginning this post, I may have gotten 1/2 a ml. We'll see what the lactation lady says...I'm going to make sure I meet up with her sometime today.
Anyway, it occurred to me that all may not view some of the pics we post as I Mikey and I do. See, this one that I've posted. To me, She's got this precious little eye seeming to recognize my voice, my face. It's just a little sliver of dark blue, just like Tristan's were....don't go on about all babies have blue....Tristan's are still that beautiful. ...Anyway, she has this little expression. When Mikey was taking these pictures, I had just finished having a complete break down with the thought of leaving her for the night, she'd shown us both eyes open for just a minute and then allowed me the pleasure of talking to her while she wiggled around and would peek that one eye open and sort of look around and then focus on us. ....Ireland had been still as possible and her eyes swollen shut due to meds and ECMO up until that moment. They had been weaning her little by little off of certain meds and were trying out how her blood pressure could handle this. This was tweaked in extremely tiny increments because the doctor had made it clear that her cannula (spelling? term right?) that are through the neck and into the heart (ECMO) really should not move and that movement and stimulation could affect so many different things right now....A call around 6pm or 7pm to the NICU, once we were home, actually confirmed that there had to be a little more tweaking of the meds because her blood pressure wasn't handling too much movement that well.....A call I just made, 2 am, to the NICU said that she is once again wiggling a bit and trying to look around and she's handling all of this fine. Her fluids are going down further and she's just doing well. Her blood pressure is looking well. Anyway, going back to her picture. In this picture alone, I see my little princess. I can imagine putting bows on those scalp sensors (or whatever they are). I don't see the swollen side of her face so much unless I'm trying to envision it as someone else may see it..I just see that she is sort of winking and her cheeks are just truly adorable. Her nose is just this tiny little pug thing in the midst of all those cheeks. Her little ear looks almost elfish and I dream of her being a fairy or elf for Halloween. The tape across her face almost acts as a little mask that is hiding this devious little smile and that little chin is just somewhat covered by those tubes. I don't see the cannula so much...think they're pretty well hidden. ....These moments with her were like yet another miracle. I felt God had just given me a gift. It was okay to go for the night. She was in his hands, not just the nurses'. That she was going to be ready for stories and talks tomorrow. That the cooling they'd turned off and felt the need to do to save her from the asphyxiation was nothing to her. She was okay and really just ready to do what she needs to do to get home. ....this picture alone is priceless to me. I shared it with all of you because I thought you'd like it too. ....Anyway, when you look at pics now from when she began this journey (many that we decided it best NOT to share), you can see that there are less machines/towers (towers=yet another med). Instead of a jumble of tangled wires near those tubes, there is a neat set of tubing/wiring that I now understand (for the most part) what it is needed for. Pictures of her sprawled out in her little "bed" show how her color is looking so good. And many times, she's just beginning to yawn and throw her limbs out....Well, I need to get back to bed. I just wanted to see if I could explain the progress we see. I also am hoping that you truly see how adorable she is.


  1. I love the pictures of Ruby on ECMO. At the time I though she was perfect. She would open her eyes and even smile. It just goes to show that she's in there. Under all the swelling and sedation she's in there. Even today Ruby makes faces that I recognize from her ECMO days. She was communicating with her expressions even back then.

    I hope things go well today. I'll keep you guys in my thoughts.

    Holly (Ruby's Mom,

  2. I also meant to say Ireland looks beautiful! I too up pumping. It's hard, but it's worth it.

    Holly (again)

  3. I think all of us CDH parents understand the beauty of each baby under all the tubes, wires and swollen eyes, the chubby cheeks behind the white tape. We've all been there and know that all the medical "stuff" doesn't take away the cuteness, it quickly becomes background and all we see are the miracle babies.
    Ireland is beautiful!

  4. She looks so wonderful! I love the peeking of the eye to say, hey I see you, and know ur there!

  5. Love this picture!!! She knows you are there with her!

  6. She is looking better by the day! Hope things continue to improve quickly. I got a costume catalog in the mail and they have a ton of cute costumes for babies. I hope you guys will be able to dress her up for halloween this year. Still sending prayers your way-Serena told me that she thought of Ireland earlier on today so she stopped and said a prayer for her. She is very thoughtful and concerned about her. Much love to you all.