Today was a roller coaster of emotions. Hope was slightly less grumpy in the morning and slept a bit better than she had the previous night. She is retching often and was having a lot of diarrhea through the morning. Rounds started a bit later this morning, but our favourite nurse practitioner was back! She is just covering for the next two days. Still, it was so wonderful to have her back and feel that sense of familiarity as well. In the morning we were told that they would take Hope on Thursday if they could to check the varices in the OR. If they looked good, she would have her open heart surgery on Friday. I called Shawn and we began planning our next steps with this plan in mind.
Not long after, we were told that if the varices were there at all, they would be treated and this would delay our heart surgery by 10-14 days. Shortly after this news, I ran into the GI doctor downstairs. He told me that Hope would be going into his OR on Friday. I told him that we were having a heart surgery on Friday and asked how that would work. The cardiologist came back in to see us in the afternoon and confirmed that the varices would now be done on Friday and the heart surgery would be rescheduled. If they do not need to inject the varices, if they aren't that bad, she will be rebooked for next week. If they are treated (this is more likely), we will be waiting at least 10 days to get the heart surgery. Now the question is...do we have to wait in Edmonton? Hopefully by Friday we will have some answers and can make decisions and do some planning.
Today was also a reunion with other families. While downstairs to grab some lunch I ran into the parents of a family we lived with for many months at RMH. Their son passed away shortly after we left for Calgary in November. It was wonderful to hug them and to let them know how sad I was to hear that their little man was no longer with us. Their daughters had been such a gift for Sadie at the RMH and kept her busy most weekends. The mom then told me that if she had to do it all over again, she would have never left her son's side. I walked away ready to cry and overwhelmed with guilt that I wasn't strong enough to sit next to Hope 24 hours a day. Thankfully I ran into Angela, Holly's mom, who was in Edmonton for a biopsy. It was perfect timing and a needed distraction. Holly is having a heart cath tomorrow morning, please be praying for her. She is doing very well and we're hoping that everything comes back looking perfect!
The most positive thing about today that deserves to be celebrated only happened an hour ago. At 6pm Hope's TPN, liquid nutrients, was turned off! For the first time since October 24th, Hope is on full feeds! She is not enjoying this and appears to be quite upset but should adapt and will benefit from eating in the long run. I pray we can stay on full feeds and make some progress with the intolerance issues as well. The doctor is already talking about getting her back on bolus feeds (large volumes in a short period of time). Please be praying that Hope will finally gain some weight. She has continued to lose weight since our arrival in Edmonton and is very skinny right now.
The days are long and often very hard. Hope's constant fussiness and crying can begin to tire you as the day continues. Over all, I know that we are blessed to have her continue to fight for her life. I also see the families around me and know that we are not alone, so many parents fight for their children everyday and are tired too. Thank you for continuing to care and for praying for Hope.
You are so strong and do everything for your daughter! Don't second guess yourself, you are doing everything you are supposed to and more. I was very struck by your strength when I met you and I truly believe that you are doing an amazing job as a mom!
ReplyDeleteAmy, I pray that you don't carry guilt over leaving the hospital to spend time with Shawn and Sadie and to spend some time on you. After spending only one night with your little girl, I see how hard it must be to stay in that atmosphere hour after hour for months. I think the fact that you are taking care of yourself makes it possible for you to keep going and that's what Hope needs. There is no one way or right way to walk through this trial that your family faces and I think you are amazing and inspiring. Thank you for always being truthful about your feelings through this journey. My family and I continue to pray for you and Hope especially during these next few days and weeks and through the upcoming surgeries.
ReplyDeleteDon't get hung up on the other mother's comment about never leaving her son's side. She probably meant it figuratively rather than literally. Also, another lesson I have been learning the hard way is that you simply CANNOT be there all the time, for the sake of your own sanity if nothing else. Only God can be everywhere at all times. Only God can be with both of your girls at once when you are in different places. HE doesn't expect you to be there for them all the time - that is His job! He just expects you to do as much as you can with His help. And I know that He often likes to send His help in the form of other members of His body coming to assist you. Community is His idea, and learning to accept help can be far more challenging and growing than being there all the time yourself. God's plan for you is not to "be all" and "do all" for your kids. He just wants you to point them to Him and show them who their heavenly Father is. I know you are doing an incredible job of dealing with what you've been given, and I know God will fill in the gaps that our humanity leaves behind with His wonderful love and provision. More of Him, less of me, makes for a beautiful picture, you'll see!
ReplyDeleteYou are all often in my prayers. May God bless you with strength, peace and wisdom. You are all precious in His sight.
ReplyDeleteLove from Rosalind (Scotland)
Praying for you all! And for added strength & energy & wisdom as you balance being a mom, a wife, and simply you. Remember, there is no condemnation for those who are in Christ Jesus. Ask Him to lead when you are with Hope. He made you & will guide you! So happy to read she's on full feeds! Blessings!(Norway)
ReplyDeletePrayers for strength, courage and HOPE from Ontario.
ReplyDeleteDearest Amy. Of course we continue to care! How could we not? I know this is your own journey, but I am honored to be one of many to walk it with you. I wish I could be there to stay a night with Hope and can't wait for the next time I can. Don't take to heart any feelings of guilt for not being there 24/7. In order to be a good mom, you need to take care of yourself, just like applying oxygen masks in airplanes. In order to help your child you must help yourself. You are all rising to this challenge beautifully and I just want to send so much love! Rooting for you HOPE!! Keep fighting little princess <3
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