We arrived home from Seattle last night, and I think it’s safe to say, everyone is glad to be home. We were there about a week for Poppy’s routine follow up appointments, as well as her long awaited eye muscle surgery! God provided the Ronald McDonald House for us this time, and what a tremendous blessing it was!
Poppy had an EEG to check for seizures, primarily to see if she is ready to start weaning off of her anti seizure med, Keppra. We haven’t been seeing any seizures, but at her last EEG in October, they had detected some abnormal activity and because of it, she stayed on her same dose of Keppra. The EEG this time, did show some improvement!! Woohoo!! Hallelujah!! Dr. Kollros still doesn’t feel it’s time to wean the Keppra, as there was still some abnormal activity. However she’s been on the same dose since last May, so I’m thinking she’ll probably just end up outgrowing her dose and eventually come off of it that way! All in all, a decent visit with Neurology! Praise God!
Dr. Albers, one of Poppy’s Transplant Cardiologists was overall very happy with her! She said that her echo looked great! Despite some increased tricuspid valve regurgitation (TR) they had picked up at her cath in February, that her heart function looks really good! Hallelujah! Jason, the transplant nurse that was on, was actually the one I sobbed all over, almost a year ago now, when he told me to prepare for a long night, that Poppy was getting her new heart!!! So it was very good to see him again, as it’s nearly been 1 year since Poppy’s transplant!! We’ve seen Jason since, but it was neat to have him as our nurse this month of all months (her transplant was May 31) How did that happen?!! Soo crazy… Anyway, they were very pleased to see how well she’s recovered from the RSV, as well as her new skill of sitting unassisted for a few minutes!!! 🙂 Hoping and praying that this girl will be ready for an Intensive Tube Weaning program sooner than later, so we discussed that briefly as well. Seattle Children’s offers an intensive tube weaning therapy for a couple weeks, where it’s doctor supervised. They draw frequent labs, and weigh often so that it’s done safely and effectively. I’m so ready for her feeding tube to come out!!!….But it’s not on my time….;) Still praying for grace and patience with that.
Poppy’s eye muscle surgery went extremely well! Her Ophthalmologist, Dr. Tarczy-Hornoch, was very pleased with her results so far, as are we!! She was super groggy and nauseous from the procedure, but seemed to sleep it off really well. Her eyes, despite their shocking appearance (half of the white is red for the time being), look really good! They are straight, and it already seems like she can see a little better! Thank you Jesus!!! She’s still very farsighted and will continue to wear her glasses. As far as the depth perception, we won’t know if she was able to gain any until she is old enough to communicate that she can see certain things certain ways. But judging by the way she is healing up and seems to be responding to the surgery, we are very hopeful and encouraged that this surgery without a doubt, was entirely worth it! 🙂 Soo happy for my darling girl…that she can see a little better…that she can interact a little more..soo sooo incredible!!! Thank you Jesus!!
Today brings back many memories of last year on this day. This day last year, was a day of excitement and anticipation for Mother’s day…The week prior, on May 6, 2013, after nearly 2 months of Poppy’s chest being open from her Norwood procedure, Dr. Musa and the CICU team had gotten Poppy to a place where her surgeon, Dr. Permut, felt comfortable to once again attempt chest closure. There was almost a sickening pressure behind this attempt in particular, because the Transplant Team had decided she needed a transplant, but could not begin evaluation until her chest was closed, because they don’t give heart transplants to patients whose chests won’t close. So what if her chest still wouldn’t close? Then what? I was literally physically ill….They had wanted to attempt chest closure the Friday before, but something came up in the OR and she got bumped. This ended up being a major blessing, God’s divine orchestration, because she just looked awful. She was so weak and I honestly don’t know if she would have been able to tolerate a trip to the OR that day…All in God’s hands….Over that weekend, Dr. Musa tried some new things, and Poppy responded miraculously. Monday morning, as she was wheeled away for her chest closure, she looked better than she had EVER looked, and I just felt the Lord’s peace, and knew she would be coming back to us with her chest closed. And she did!!!! 🙂
Once her chest was closed, of course my next question was, ‘when can we hold her?!’ 😉 It had been nearly 2 months since we were able to hold our sweet girl. The last time we had held her, was right before her Norwood procedure, when she was 10 days old. The doctors and nurses of course assured me that it would depend on her and how she does. I understood, but really hoped that Mother’s day could be the day! 😉
This day a year ago was May 11. The 12th was Mother’s day. Rounds were over, and I was just settling in to my morning to routine of pulling up a chair next to Poppy’s bedside and stroking her sweet face. I was really excited for what the next day may hold, but cautious not to get my hopes up too high, or what parents in the CICU say, ‘cautiously optimistic’ 😉 In comes one of our favorite nurses, Michelle, in her regular street clothes- she’s Australian 😉 She says something like, “come now, I’ve come to put your baby in your arms. I know you were hoping for Mother’s day, but I won’t be able to make it for that, because I have plans with my family…and don’t cry because then I’ll start crying, and believe me, it’s not pretty!” Oh I just started tearing up and I’m sure the smile on my face said it all. I will never forget how special this day was, in so many ways. Little did Michelle know, that it was my birthday, and her putting Poppy in my arms after 2 months, was a gift I will forever cherish. Michelle had been through a lot with us and Poppy…and she had come in on her day off to put my sweet baby in my arms….I don’t even have words to convey what it meant and still means to me today…<3 A few hours later, my Mom and sister, Mary showed up to surprise me on my birthday 🙂 A day to remember forever ❤
Tomorrow I get to celebrate my birthday and Mother’s day with my family..all together, and that is priceless-I am so overwhelmingly humbled ❤ Thank you Jesus for your goodness and grace ❤
Day of chest closure
My birthday! Finally holding after 54 days ❤