As low and down as I felt yesterday, I really needed the up of today.
I arrived at Children's to see my baby boy and as I stepped past the PICU doors to wash my hands (for the 1000th time) I saw a group gathered around Luke's bed. My heart sank as one of the nurses waved me over looking quite serious. I was anticipating bad news. I walked over and she said, " Good news! We pulled his chest tubes and his arterial line today!"
For those of you have ever been through anything like this, you'll understand what I'm about to say.
After she said that to me I swear, I could fly. I could have run a marathon no problem for all of the joy and adrenaline pumping through me. Like I said in the previous post--Roller Coaster!! I can't really put into words sufficiently, but as low as the lows are, the highs are even higher.
He had gone all night with no arrhythmia's, no climbing heart rate.
Part way through the day Luke graduated into a "big boy" bed. ( See pics) He looks so good to me. With each new tube, wire or probe that is removed it feels like we are so much closer to having our boy come home. Each little step feels like such a big triumph.
Luke and I had a great, mellow day just hanging out together and I even got to hold him. My arms have been aching to hold my little guy. I'd be a liar if I didn't admit that I was nervous. He still seems so delicate and I was afraid to dislodge the lines he still has coming from him. Snuggling him was just what the doctor ordered (pun intended...).
He also had visitors today. My friends Susan and Lori came by to say hi. Susan's daughter had the same operation a little under 2 years ago and she has been my guide through this whole deal. She is always so upbeat and positive that I can't help but feel like it's all good when she's around. Seeing her daughter, Charity, also gives me comfort and hope. She is a healthy, strong, adorable little girl who's doing great with her fixed heart. Mike also brought all of our other kids out today. As you know, we're kind of a motley crew so we got some pretty sideways glances from the nurses in the PICU and some scoldings of not to have so many people at a time by Luke's bed.OOPS...
I'm off to bed now. The rest of the house is silent and sleeping. So I'd have to say my final thought for the day is, who knows what tomorrow will bring? The only One who knows isn't giving me any more answers. Guess His last answer to "be prepared" still stands....but that's a story for another day!
What great news about Luke! He is an inspiration.
ReplyDeleteGood to see you! You and Luke look so good under such great stress. I know all the love and support you are getting from prayers (God) and the many people who are doing all they can for you are giving you the extra boost you both need. You guys will make it through this and be stronger because of it. What great friends and family you have!
ReplyDeleteLuke is really bringing people together and touching many people's lives already and he is only 3 months old. Amazing little guy! He makes us more grateful for what we've got and more prayerful. Who couldn't ask for more. He's a special little spirit!
As far as your milk goes. Just keep doing what you can during the day and don't stress too much at night. If you CAN wake up, great. If you CAN'T, don't stress just tell yourself that your supply is hurt if you are exhausted so you were doing your body & Luke good getting the zzzz's you needed. Take Brewsers yeast tablets with lots of water (the powder works better than the tablets, but it tastes awful and can only be somewhat manageable if drank mixed with OJ). It will help increase your supply. Just let someone who wants to help get it at a supplement store. During the day, just keep trying to do what you are doing and pump about every 2 hours (it's easier at the hospital to build your supply since you have nurses around). Luke is all you have to worry about right now. All your "angels" (friends, family, doctors, nurses,whatever) will make up your difference. So take care and just love on your baby. He knows you are there.
Also, you may want to get addresses or connected on facebook/whatever, with some of the people you are meeting in the PICU. You can continue to lift and support eachother out of the hospital.
Take care and give the little guy a kiss from all our family.
John, Susan, Julianne, Charity, & Annelise
What an amazing little guy you are, Lukas. One down day is nothing compared to the hurdles you keep jumping. It's obvious you want to be here as much as we want you. Keep up the good work so your family and friends can watch you continue to grow and blossom.
ReplyDeleteWhat a joy you are to your very large coterie of family and friends. I love you.
Grand
I love reading about your ups and downs - even though I wish it was only ups for you. How wonderful that you can capture all of this in your clever and real way Kinney. Know I love you and think about you and pray for you every day. Lukas is one amazing kid.
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