Monday, April 25, 2011

4 weeks.

Today on Easter Sunday, Grace is 4 weeks old. 4 weeks ago was supposed to be the start of some of the best days of our lives. A new baby is the most amazing gift, and this new baby was so so wanted and loved and very anxiously awaited for. I never could have imagined the past 4 weeks would have played out the way they have.
I don't even know how to put the last 4 weeks into words. Last night for the first time in 4 weeks all 5 of us spent the night at home. The first night there was not one of us at the hospital with Grace. Honestly we should be excited about that. It meant we were comfortable enough with her progress to do it, to give our boys some normalcy. Iain was so excited, he said "you are both sleeping at home!?" Its sad that he's grown used to only one parent or just grandma. So then we all drove up to Uof M this morning. Coincidentally we were driving through at almost the exact same time we first drove up to U of M four weeks ago. On that drive 4 weeks ago I had no idea what was coming, no idea what was in store for us. I remember feeling so dizzy as we walked that long walk from the parking garage to the NICU (hey I had just had a baby, 10 hours earlier!) and going to the wrong place and the nurse telling us "only healthy babies are over here, you need to go down the hall" and that hurt, I don't know why but her words stung. It was all like a bad dream. When we walked into her room, there were probably 25 people rushing around taking care of her. I think that was when it hit me that she was really sick. Somewhat sick babies don't have that many people rushing around them. She's come a long way since that day.
Grace has had more good times. her Nitric was weaned from 80 to 48, which they did do last week but she didn't tolerate it so they went back up. Let's really hope and pray that they can leave it and keep weaning, the goal is obviously 0. She hasn't been desatting, even when she's awake! she is able to stay awake and go back to sleep without having to be given a PRN of anyting. Before they do assesments and move her they give her something to prevent her from getting worked up but otherwise she is fine. She has actually been suctioned a few times without having had "happy juice" and tolerated it. She is doing such a good job. I am so proud of my little girl. She was awake Friday night for close to an hour and was tolerating having her top up and so I was able to pull a chair up right to her and talk to her and be face to face with her, talking and making awesome eye contact and kissing her. It was amazing. It made my heart just soar. I think she liked it too!
Today for Easter we brought in a dress, and obviously she can't wear it yet but we drapped it over her and took some pictures with her dress and hairband. She tolerated it very well and was so dang cute. She was even awake for it, so it was so so cute.
Big thanks for the last four weeks are in order. Thank you so much to the "Easter Bunny" who left the kids goodies on our porch this morning. They were so so excited and surprised! (us too!) Everything was very well recieved and all has been put to use already! Thank you so much to the Schaefer family, for driving from CT to help us out last week. I will always be so glad and thankful that the Navy brought us together. Andi and Maya (though I don't know you, I think you must be awesome!) for doing an online benefit. I can't tell you how humbled I was, when I was finally able to hop on over towords the end. Everyone involved in anyway with that, is amazing. Thank you Lynette for bringing dinner last week. Yum! Thank you to all the people who have sacrificed thier time and time off work for watchign our boys. Bowling Green SS, thank you for the card and gift card! Fremont SS, thank you for your care and and for giving Adam the ability to not worry about work. I promise he is coming back! Thank you to everyone who has helped out in any way, thanks for the thoughts and prayers. Please pray that Grace will continue to improve and that we will be able to bring her home in a few months. Pray that we will continue to be able to weather this storm, it seems it is getting harder to juggle everything as the days just keep passing. Pray that Grace can continue to tolerate all they are doing to her. She is such an amazing girl. I am so proud of her!


  1. I have been praying for your Grace and glad to hear she is making progress and doing well! I know the journey is hard, but take it day by day and keep celebrating the small steps. My Dakota is a 2 1/2 year old CDH survivor. She was born more than 7 weeks early as well, and also was on ECMO. She is perfect now!!!
    Mom to Dakota 12-25-2008
    RCDH survivor

  2. Aww she is beautiful!! So glad to read she is doing better. Baby steps!

    Mom to Andrew
    CDH/ECMO survivor

  3. I love the precious Easter photo! I'm praying for Grace and your entire family!

    Mom to Ramsey
    LCDH survivor

  4. She's gorgeous! What a beautiful dress and a beautiful girl. We are following along and praying with you, and thank you for your encouragement as we travel the same road.

    Clara's dad in NC

  5. the Hammer Family is praying for little Grace:) she looks like she is smiling in her Easter photo. So sweet!!!