Hope is 3 months today! What a wonderful feeling and we are so thrilled with how well she is doing at home. Christmas is almost here and Hope is the best Christmas present we could ever receive. I hate thinking back to all the bad news we received, both before and after she was born, but it is hard not to look back and know how blessed we are. God has been great to our family.
Hope has been reaching her milestones which is great. Although I really like her physical therapist and she has taught me so much, I am glad that she is where she is supposed to be for her age. They are going to stop her visits and that is kind of hard for me because the physical therapist is really hands-on and had taught me a lot about helping Hope develop. Our feeding problems seem to be a thing of the past (knocking on wood as I type this). Hope is taking 80-100 mls every 3-4 hours. She hasn't been throwing up...except when she gets mad or isn't burped enough. She is gaining pretty good and will probably be 9 pounds by January. I am really trying to get some pictures of her smiling. She and I will spend a lot of time smiling at each other and it is so much fun. She loves to practice smiling and has been showing off to everyone that is willing to sit and smile at her.
We had a nice surprise today...the Palliative Care Team from Akron Children's Hospital came by with some presents for our family. For anyone that hasn't read back in my blog, Hope was at Akron Children's Hospital after she was born. The surgeon's did not think that she would be a good candidate for the Norwood because of her kidney problems, so they decided not to do the surgery. We decided to take Hope to the Cleveland Clinic Children's Hospital and they performed the Norwood for her and the rest is history. We were treated really well in Akron and I LOVE the Children's Hospital. Everyone was/is great and we would have loved to have stayed there, but God had other plans for Hope and our family. We are so happy with our decision to get a second opinion and especially happy with how well Hope is doing. I am also thankful to everyone in Akron who walked our journey with us from the time I found out until today.
The hardest thing for me to think about now is Hope's next surgery. It can be scheduled any time now and that makes me so nervous. I really want to wait as long as possible before she goes back for her next surgery, but I also want to make sure we don't wait too long. Hope is doing great and I worry every single day that something might happen. I know the next surgery will hopefully be the last for a couple of years and in that way I am kind of excited to get it done. I believe that God will show us the best time for her surgery and I have total faith in Him and in the doctors that are caring for Hope.
I hope everyone is enjoying the holiday season. I know I will update again before Christmas, but until then...hug your kids a little extra, call your friends and family, enjoy the holiday season, and remember the meaning of Christmas...LOVE!
Monday, December 14, 2009
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Happy 3 month birthday Hope! So glad to hear that she is doing so well! I know how much you are dreading that next surgery, and as it really is never easy, it is a little the next time. (or it was for us) Much easier recovery, easier to see familiar medical faces at the hospital and it is just reassuring to have a little knowledge of how things work there. I will pray that you all have as good, if not better, experience like we did with Aly and her 2nd surgery.
ReplyDeleteHappy 3 months Hope!!
ReplyDeleteI know it is so hard thinking about their next surgery. We just hate having to watch them go through so much but we know they need it in order to survive. God does lead us and He knows when long before we do. We just have to trust that when that time comes we believe that the hands holding our child are the best....and we do.
Stef, Ryan, Wyatt and Logan Jacks
www.whenlifehandsyouabrokenheart.blogspot.com
We're exactly where you guys are -- in the "waiting stage" between the Norwood and Glenn. It's hard to think of Chase going through another life-saving operation, but we know God is in control of our sweet boy's life and we praise Him for the miracle that he is! I'm finding it difficult to be stuck inside our house 24/7 with him... our PC told us not to attend our family holiday gatherings this year, which is really hard. I would love to show off my beautiful blessing from God, but I know it's in his best interest to keep him home, safe and secure, so he doesn't get sick before his Glenn. Just know you're not alone! :)
ReplyDeleteHappy 3 Month Birthday Hope!
ReplyDeleteI hear you and your concerns regarding the Glenn, but based on the information that I received from Dr. Ilbawi when we met with him and reading other parents accounts, it actually seems sooner is better than later with the Glenn. You don't want her stats dipping too low and would prefer that the surgery be set in a calm environment instead of becoming an urget issue that needs to get done in haste.
I can't imagine putting Olivia through 2 OHS within the first three months of her life but I sooo look forward to that nice gap between the Glenn and Fontan.
Thank you for inspiring us to keep the faith and hold our heads high as we face the uncertain future.
Merry Christmas!
Iam so glad that Hope is doing good.YOU ARE RIGHT ALL 3 OF THEM LOOK ALIKE IN THE BABY PIC.iHOPE THAT ALL OF YOU GUYS HAVE A NICE Christmas.Maybe Iwill get to meet you guys some day mean while take it easy.Have agood new year love your cousin BRENDA
ReplyDeleteSo glad you are enjoying the holidays. Such a small world... being that I work in Akron, my employer actually donated some of the toys that went to the palliative care unit at Children's. So glad to hear you all were one of the recipients! God bless and enjoy the holidays! Angie Montgomery (from Baby Center and the Akron area)
ReplyDeleteTag your it...I have nominated you for a "tag" award, check it out on my site :)
ReplyDelete~Stephanie and Braeden