Danny and I left the hospital Thursday afternoon not being able to do much for Tyler who was having a hard time which was so hard. We just needed a break and needed to spend some time with Scott. We came home and Scott lit up our day. He and Danny washed the motorcycle, which was the cutest site! Scott would take towels and scrub every little part of the bike. He loves doing whatever Danny does. I see the future ahead of me with boys (Danny included) doing all the boy things that were non-existent in a girls home growing up. We went back to the hospital Friday afternoon and were welcomed with a peaceful, happy little guy awaiting us. Tyler was taken off his breathing tube and not struggling with his breathing. He loves being swaddled and it was so great to see him resting. The nurse commented on these little noises he makes when he is sleeping which was exactly what Scott did. They are so cute. We were able to hold him which was the best feeling. I just treasure having him in my arms and seeing him in Danny's arms. Nothing compares. You just want to do everything you can to comfort him. He is doing great. His duct is wide open which is great. A little girl just arrived next to him who wasn't pre-diagnosed and is having a hard time because the heart condition wasn't caught at birth, her duct allowing hypoplastic babies to breathe is really small and she went into some heart failure. The surgeon has 3 hypoplastic babies he needs to do surgery on right now. No surgery date has been set, but from the sounds of it, it appears that Tyler is a little more stable because his duct is so open, so he might be Wednesday. We will see when Dr. Azakie gets back in town on Monday. The nurses just keep saying what a blessing it was they caught it ahead of time. I am so grateful for this little miracle. I know it was the Lord watching out for us. Tyler has a level 1 hematoma on the back of his brain which was detected in an ultrasound. This is seen in some newborns and usually not an issue, except for the fact that it could be an issue with his surgery since they lower his body temperature significantly for surgery and regulate a lot of blood flow. The neurologist said that it shouldn't be an issue, but we will have to find out more about the situation. So Tyler is doing great. He was a little more agitated Saturday compared to Friday, which is expected from the pge medication and not being able to eat. At times I feel so helpless having a child that you know just wants to eat and is crying and you can't do anything about it. Makes you realize what a blessing it is even to feed your child. I just try to comfort him, but know he is so hungry and jaundice because of it. We continue to rely on the Lord to give him strength and are grateful for our many blessings, mostly having two boys that fill our lives with joy, purpose and love. The nurses and staff is the best. They just want to help, are so friendly and there to do anything and everything to make it easier on us. We spend so much time with them and are so grateful for all they do. My blood pressure is still fairly high. I have 15 stitches which is uncortable so am going to be more proactive about advil to see if that will lower my pain and blood pressure. Thanks for your prayers and love.
6 comments:
Dear Heidi,
It is so good to hear from you and follow the progress of Tyler and the rest of the McMillans. Our thoughts and prayers are with you.
Lins
I was so lucky to spend Saturday afternoon with Tyler. I couldn't have asked for a more amazing experience. It is something I will remember for the rest of my life. Jason and I headed to UCSF for the afternoon. At first there wasn't a lot I felt I could do, but the nurse then asked if I wanted to hold him. I loved every minute of it and it allowed Tyler to be at peace and relax. He loves being held and rocked in the rocking chair and actually slept for 3 hours in my arms.
It was hard at first to hold Tyler, but I then quickly realized it comforts him to be held. All my fears and worries were lifted and all I wanted to do was reassure him that everything would soon be OK.
You wish you could do more to help, but you realize these babies can actually help us. Tyler has given me the strength to realize that my own health problems are so minimal to the pain he must be feeling. I know he is going to be such a special gift to me and everyone else's life that he touches.
I cherished the time I got to spend with him and look forward to many more special moments ahead.
What an angel and miracle.
Love, Aunt Heather
Heidi, Danny, Scott and Tyler,
Of course our prayers and best wishes are all for you.
Thank you for sharing your inspiring experience with us. You are truly incredible!
Love,
Matt, Diane, M.E. and Monty
P.s ME says hi to big brother Scott!
Dear Heidi,
You, Tyler and your whole family are in our prayers daily during these trying times.
Love,
The Mooneys
Dearest Danny, Heidi, Scott, and Tyler,
What an amazing thing to be able to read about your daily experiences. We're so grateful for these updates and want to be there so badly to see you and play with Scott and hold little Tyler. He is such a beautiful baby and reminds me so much of how Danny looked as a baby. It's so amazing that you are able to be so grateful for so many things. We're so grateful for your faith and how you have been strengthened by a loving Father. We hope to be able to see you all soon! You two deserve the courageous hearts award. You and Tyler are going to touch a lot of hearts and be such a blessing. Love you so much, Mom and Dad McMillan
Heidi and Danny,
Just want to let you know that the Taylor family has been praying for your young son ever since your mom shared with us at the Boomers party. As Christians, we are claiming God's healing power for little Tyler and asking the Lord to carry him through surgery. May the surgeon's hands be mightily used by God, giving glory to the Lord! Your strong faith is a testimony and we thank you for your blog so that we can keep up with Tyler's progress.
Love,
Tom and Anne Marie Taylor
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