Thursday, January 31, 2013
I've been thinking...
So, the other day I watched a video that a lady on the parents of children with panhypopituitarism facebook page posted. Her son just turned a year old and it was a slide show type deal on how the past year went. HOLY COW! It hit me so hard. It was a super flashback of just a few weeks ago. Obviously not all bad but I couldn't help the tears from flowing. Just the thought of how much Leonora has been through in such a short amount of time and how very strong she is. The video made me realize that even though the day to day can be really stressful that over all this is her. I'm going to TRY to remember that every day. So when we have an off day I dont let it set the mood for her life. Shes doing great, she really strong. Such a beautiful strong baby who is loved by so so many. With all of that said, I am going to try my hardest to document every little thing that I can. Hopefully by next year I can make a video of all that shes over come and how much we've been blessed and maybe it can touch someone like that one did me. Thank you to my new panpit family. You guys make it all a little easier!
Wednesday, January 9, 2013
Another realization of my new normal
Let me start off by saying this: Things could be WAY worse than they are. Thank God for everything we've overcome and for it being what it is and not anything more.
With that said, I need a minute to break down a bit. I know nobody plans for anything bad to happen to their child(ren). The NICU is never a place that is ever in the plan. I understand that. But it is one of the hardest things I've ever been through emotionally. I truly believe there have been specific paths in my life that I've taken that have prepared me for this. However, it is so emotionally draining. Anyone who has had a baby in the NICU, or anything alike, can relate.
The past six weeks have been a roller coaster ride to say the least. Leonora has gone through so much. I am so proud of her. She is such a little trooper. We have good days and bad days. The good so out weigh the bad but the bad stick in your mind longer than the good unfortunately. We celebrate small victories (which do happen often!).
Today was a rougher day than normal. Probably more so for me than her (or at least thats what I'm told :D). Today Leonora got her G tube placed. Which means we get to go home soon (HUGE victory). However, it hit me today that my baby has a tube hanging out of her belly. When I saw her after surgery everything raced through my mind. The tube I had been asking for was finally in place and then I started to think that I didn't want it there any more. Before the surgery it was an easy decision to make. I found myself second guessing (I realize now, after a few hours of processing, that she is fine and doing well and we made the right decision). I find myself looking for G tube accessories on line instead of looking for more cute little clothes or headbands. I find myself searching for cute backpacks to make for her pump when she gets older. Its our new normal.
Today has hit me harder than any other. I think its a combination of her surgery (which was literally only 4 mins long... prep and recovery took longer than the actual procedure.) and the fact that our stay at the Ronald MCDonald house is coming to a close. We have met so many wonderful people, new friends, who are all in similar situations. What an experience it has been to talk with them and cry with them, pray for them. They have all been a huge blessing to me. I know that it has helped me through so much.
I have to keep reminding myself that today was a small victory. Leonora is a champion. We're going to be going home soon. A G tube is not the end of the world. Shes not broken. I've met amazingly strong people. Starting the close of this chapter is truly bitter sweet.
Thank you to my Ronald McDonald family! You guys are wonderful and continue to amazing me. We have some pretty amazing kids!!
Leonora is going to do great. Shes a strong girl. And she is gonna look so darn cute with her G tube accessories (yes there are really accessories! :D)
With that said, I need a minute to break down a bit. I know nobody plans for anything bad to happen to their child(ren). The NICU is never a place that is ever in the plan. I understand that. But it is one of the hardest things I've ever been through emotionally. I truly believe there have been specific paths in my life that I've taken that have prepared me for this. However, it is so emotionally draining. Anyone who has had a baby in the NICU, or anything alike, can relate.
The past six weeks have been a roller coaster ride to say the least. Leonora has gone through so much. I am so proud of her. She is such a little trooper. We have good days and bad days. The good so out weigh the bad but the bad stick in your mind longer than the good unfortunately. We celebrate small victories (which do happen often!).
Today was a rougher day than normal. Probably more so for me than her (or at least thats what I'm told :D). Today Leonora got her G tube placed. Which means we get to go home soon (HUGE victory). However, it hit me today that my baby has a tube hanging out of her belly. When I saw her after surgery everything raced through my mind. The tube I had been asking for was finally in place and then I started to think that I didn't want it there any more. Before the surgery it was an easy decision to make. I found myself second guessing (I realize now, after a few hours of processing, that she is fine and doing well and we made the right decision). I find myself looking for G tube accessories on line instead of looking for more cute little clothes or headbands. I find myself searching for cute backpacks to make for her pump when she gets older. Its our new normal.
Today has hit me harder than any other. I think its a combination of her surgery (which was literally only 4 mins long... prep and recovery took longer than the actual procedure.) and the fact that our stay at the Ronald MCDonald house is coming to a close. We have met so many wonderful people, new friends, who are all in similar situations. What an experience it has been to talk with them and cry with them, pray for them. They have all been a huge blessing to me. I know that it has helped me through so much.
I have to keep reminding myself that today was a small victory. Leonora is a champion. We're going to be going home soon. A G tube is not the end of the world. Shes not broken. I've met amazingly strong people. Starting the close of this chapter is truly bitter sweet.
Thank you to my Ronald McDonald family! You guys are wonderful and continue to amazing me. We have some pretty amazing kids!!
Leonora is going to do great. Shes a strong girl. And she is gonna look so darn cute with her G tube accessories (yes there are really accessories! :D)
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| Waking up to see mommy |
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| Notice NO tube on her face!! |
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