Starting near Midnight yesterday we definitely had a looong day. That is when our alarm went off to stop Grace's feed, and try to get her to take some milk by bottle. Our alarm rang again at 3:45am to try and fill her up on some Pedialyte. And then again at 5:00am to get us up, ready and out the door by 5:30.
Given the circumstances however, Grace was an angel. She didn't wake up every 10 minutes through the night for a binky, in fact she slept through the whole night, except for the 3x we had to actually wake her and try to feed her.
We figured the 'no food rule' after 4:30a.m. would be ok, because she was the first Catheter appt. of the day, bright and early at 6, so she wouldn't be hungry. But, we had forgotten that hospitals are never on time. So, we waited around from one room to another until they finally took her back to Anesthesia and the Cath Lab around 8:00!!
By that point, Grace was definitely hungry and quite fussy. *sigh*
Going to the operating area where parents had to watch their kids walked away by a nurse, or had to pry their little fingers off their legs, then watching the little kids start to cry for their mom's and the parents reassuring them, "I'll see in you just a minute-don't be scared", was probably one of the hardest things for me to see. It made me so grateful that Grace can't yet distinguish quite who is holding her or what is going on. She can't cry to me to please stay with her and I don't have to watch the fear on her face as someone else carries her away. I really hope I never have to do that, that her surgeries will all be done before that recognition has appeared on her face. It was definitely a humbling experience, and one that made me grateful for her falling asleep just before we had to hand her to someone else. She never even knew she was being passed around, she just kept peacefully sleeping. What a blessing!
They told us to expect around 3 hours, gave us a beeper and shut the door to the operating area.
We tried hard to entertain ourselves, we didn't want to wait in the parent waiting area, too many people that are uptight and nervous to hear back of their results, and Topher and I didn't want to feel all those emotions flooding the room.
So, we had breakfast in the cafeteria, it was funny because it felt so normal to be back in the hospital, eating in the cafeteria. It almost felt like we were back in our 2nd home or something. Walking past the PICU just made us remember how long we really were there. It was crazy to think it was only a Month and a half ago, because it felt like we'd had Grace home with us forever.
After eating at the cafeteria, we wandered around aimlessly, eventually found the College of Nursing Gift shop and spent way too much money on books, books and more books for Grace!! We also bought her a mini stuffed animal that is actually a 'White Blood Cell'. LOL!!! We figured it would help protect her against diseases and such, since that is going to be her biggest battle through the rest of her life. ;)
Way too much money later, we got the page saying they were done on Grace. We ran back to the Cath Lab and met Dr. Gray, waiting to tell us how everything went.
He said everything looked great, there weren't any unexpected surprises. They were able to balloon open her Atrial Septum, and it increased her Saturations by about 10%. They also said that because of the placement of her first two stents, that there was a slight gradient, causing less blood to flow through and up to her heart, brain, and arms. He said that if she doesn't get a Transplant soon, the next thing that will have to be done is another Cath Lab to place another stent.
Some good news, was that he looked closely at her heart, watched the blood flow and efficiency of the Tricuspid Valve, and said that even though it is still leaking, its not near as bad as they had feared, and that if she started to get sick, and still hadn't received a Trasnplant, he felt confident in saying he would be optimistic about continuing on with the initial surgeries.
That was nice to hear, because at least we know that we have a back up plan, in case the Transplant is unsuccessful.
We were able to go upstairs and see her about 45 minutes later. She still wasn't quite herself, her cries weren't her usual spunky wails, but instead were high pitched little whimpers. Very heartbreaking to hear!! We fed her some Glucose Water, and then she fell fast asleep against Daddy's chest, mouth open, drooling and everything!
Later she had an Echo to see her heart function and see the improvement the balloon had enabled.
After her lengthy echo, we were headed back upstairs for the Nurses to monitor her for another couple of hours.
They let us feed her some milk, and she tolerated it really well.
Something I forgot to mention, is that I have NEVER heard Grace SO SO gassy!! Not ever!! She was farting up a storm!! Even the Nurses were stunned that she was so gassy! After we fed her, she also had to burp constantly for about 30 minutes!! I don't know how she got so much air in her little tummy!! But she did, and even until late last night she was still really gassy and needing a good 20 minutes to get burps out!! So crazy!! Not to mention stinky, we kept checking her diaper because she stunk so bad, but it was just gas!
Anyway, she's home now, and luckily she was exhausted, because Topher and I sure were and we needed some sleep too. I think I passed out on the bed around 7:30, and didn't wake up again until 11:00pm to get her feed ready. Then Topher and I both crashed around midnight, and it is now 10:00 a.m. and Topher is still asleep...as is Gracey. :)
Thank you for all your prayers. I know they were all heard and answered because yesterday couldn't have gone better. Grace was an angel and so tough and strong. We had energy to get us through everything that was necessary and then we were all able to just sleep.
Thank you again for all your support and prayers in our behalf. We couldn't survive with our sanity in tact without them!!
Love you all,
Buggy, Topher and Grace
6.27.2008
All is Well!!
6.25.2008
Cath Day
So tomorrow we go in for Gracey's Cath Lab appointment. Starting at midnight tonight, she can't have anymore milk, and after 4a.m. she can't even have water anymore. Luckily we're the first appointment of the day, bright and early and 6 a.m. And if all goes well, no complications, she'll only have to be in recovery for 4-6 hours and we can come back home!!
6.19.2008
Dr. Appt.
Again I feel very blessed and like heavenly Father is always looking out for me. Last night I came down with a fever, and then I had it even worse this morning. I had to take Grace in for her weekly Echo and it took everything I had at the time, (and Topher) to get me out of bed, into the car and at the appt. I then had to go home, without Topher, and was going to be home with Grace for another 5 hours by myself. I cried on the way home from the Hospital because I didn't know how I was going to manage to take care of Grace when I couldn't even lift her without getting light headed. Lo and behold, Heavenly Father was watching my every move, and as soon as we got home at 11:30, Grace went to sleep and did not wake up again until 3:00. At which time she proceeded to give me smile after smile after smile. I didn't have to hold her and risk getting her sick, the entire time we were home, and by the time I had to pick Topher up from school with her, my fever had broken.
This may seem silly, but I felt very blessed to have everything work out for the best under the given circumstances!!
On a different note, at her appt. today it was determined that her Saturation Levels are steadily declining and a Cath Lab to balloon open her Atrial Septum was going to be needed.
So, they've scheduled us for Thursday, and hopefully if all goes well she won't even have to stay the night in the hospital.
Even though the Cath Lab is not an actual surgery, and it is much lower risk than her previous surgery, it is still something that comes with its own risks. Please pray that she'll do well through the procedure and that it will result in her being healthier and more comfortable.
Love you all and hope you're all doing well!
love the Andersens
6.17.2008
okay okay...
I realize it's been a while since we last posted, but I have to say that I don't like posting without pictures...and when you lose your camera charger, that makes pictures not very possible.
6.01.2008
New Achievements!
Today was a special day, because today was Grace's first time in church! Now, we realize that some of you may think it was dumb of us to go to church...but, take comfort in knowing that Topher and I are not completely dense. ;) We prayed about it and both felt really good about the decision.
That being said, we only took her to Sacrament Meeting, we kept her in her stroller, didn't let anyone touch her, and left very shortly after the meeting was over.
She was SO wonderful for the entire thing!! She never uttered so much as a whimper. In fact, she slept through most of it and for the parts she was awake, she contentedly sucked on her binky.
A few people like my relief society president and visiting teachers came over afterwards and admired her from a distance, everyone was ofcourse smitten with her!! ;) But it truly was a such a wonderful experience to have us in church TOGETHER. Topher and I haven't been very good at making it by ourselves since she's come home and we had felt like we'd been spiritually starving. Hearing the testimonies of our fellow ward members was just what we needed to get us through another week.
Also, a new development, Grace has started smiling! The Pediatrician was actually worried about her at our last appointment because she wasn't ever smiling at us!! But then, about two days later, she started smiling a LOT more frequently. Now, I'm not saying she's the happiest baby now, cuz she definitely still scowls more than smiles, but those few extra smiles every day are so wonderful and make every difficult moment with her so very worth it!
I also want to bear my testimony, even if only for me, that I am so grateful for this gospel. The lyrics to a special Primary song have stuck in my mind the past few days and express how I have felt:
"Whenever I hear the song of a bird, or look at the blue, blue sky...
Whenever I feel the rain on my face or the wind as it rushes by...
Whenever I touch a velvet rose, or walk by a lilac tree, I'm glad that I live in this beautiful world...Heavenly Father created for me.
He gave me my eyes, that I might see the color of butterfly wings. He gave me my ears that I might hear the magical sound of things. He gave me my life, my mind my heart, I thank him reverently. For all his creations of which I'm a part. Yes, I know Heavenly Father loves me."
I am so grateful for everything he has given me and everything he has blessed me with. I'm so grateful for the knowledge that his hand is in all things and that he is constantly keeping a fervent watch over me, my loved ones and especially my little Grace. I feel so blessed to have her in my life. I never realized such love was possible, and it is only more overwhelming to imagine the love my Father in Heaven has for her. I'm so grateful for the time I have been blessed to have with her and pray that I will continue to be grateful for every extra day.
I'm thankful for each cry she utters, becaue she is able to feel happiness and pain and express each one. I'm grateful for each feed, each diaper, because I get to be the one serving her instead of relying on a nurse. I'm grateful for the recognition she has begun to show in her eyes when she looks at me and her Daddy. I'm grateful for each smile and anxious for many more. I'm grateful for her in every way. She is my sweet miracle.
And I am also so very grateful for each of you. For the part that you have played in comforting us and offering help in any way. I know Heavenly Father has worked his miracles through each of you and your prayers and fasting for us.
Thank you so very much for your faith and prayers in our behalf. We pray his blessings upon all of you for your love and support.
I hope you all have a wonderful Sunday and a wonderful new week.