Haley

This picture was taken last week. I love her blue eyes. She's gonna be such a beautiful gal (add those lashes in the mix and wowzer).

Callie :(

My heart is just broken right now for a family we met about a month ago. Being in the hospital (especially the PICU) you meet many different families from different walks of life. This family had a little girl that is 3 months old. She's a twin. She was born premature (of course). And she was diagnosed with Hypoplastic Left heart Syndrome. (HLHS). She had the hybrid surgery (much like Haley). When we were roommates it was very soon after her 2nd band revision surgery. She came in with the breathing tube and she apparantly hadnt ever been off it. They tried to wean her several times but wouldnt tolerate it. They took her to have a test done on her lungs to see how strong they are and she has bronchamalysia. With that she would need a trach. They were told that she wouldnt be able to receive her next surgery (the glenn) either. The family turned to St. Louis and then to Denver to await word if she would be a candidate for a heart tranplant. The family found out that they said no and there is nothing that can be done. Now they have to let nature takes it course. Without the breathing tube she cant breathe on her own. Im so sad :( That has to be so very hard.
Please Father, take away their sorrow if this baby has to die. Help them to turn to you in their time of pain.

Life is like

When Forrest Gump said "life is like a box of chocolates, you never know what you're gonna get" really couldnt sum it up better than that. Wow, with Haley our little miracle child that is totally true. We had her cath scheduled for March 26 and have been patiently waiting on the 4th floor for that. She was doing great. She got to play, listen to music, and have the attention of any nurse she wanted. Every nurse falls in love with her (can you blame them?). Last week we had the kids up here for spring break. We took them to the zoo and that's when we started to notice Noah coughing. His cough didnt get bad until Tuesday, and Wednesday he started running fevers. We kept him away from haley but apparantly that didnt work. haley got sick. She started running fevers, high temps, really worked hard on breathing. They had to do a viral culture and therefore cancelling the cath. We were brought down to the PICU the 25th and she was intubated on the 26th. So far every culture has come back negative. Not sure what the plans are now for her cath. They are treating her for pnuemonia. Antibiotics will be given for a whole 7 days. They may possibly take out the breathing tube tomorrow depending on her xrays, and how well she does. Noah's bday is next week and we need to go shopping to prepare for it. I have no clue what to even get him. I look forward to the day when we get to go home for good!!!!

Time is Ticking Away

As I recall that's an old dc talk song. Wow how memories are brought up because of a song. Lol We are still in the hospital, and will be for quite awhile, at least until through April. Haley was taken off the milrinone last Monday March 5. It is now the 10th, so 5 days off. She is doing good. The only minor problems she has is desatting when she is sleeping, but if she's on her right side she does really well. Not exactly sure why. We are up here on the 4th floor now. We have had one of our favorite nurses since being up here. She also gets to be a primary for us! We are very excited to establish that up here with some of the nurses (they have become family to us). We await her cath which is March 26. The main goal is to gain weight. It will be a relatively quiet stay (which is perfectly fine for us.). I am looking forward to bringing the kids up here. Although it is more hectic having them up here, it will be nice being all together. Trying to think of cool things to do while they are up here.