Lexi's journey began at 5am when we had to wake her up and give her a bath with Betadine solution; thirty minutes later we all piled into the car and headed for the hospital. It was a quiet ride with no one on the road. The older kids were still half asleep and Rick and I were a bundle of nerves. We arrived at the hospital and checked in at 6am. For the next hour and 38 minutes (yes I have it down to the minutes) we waited, Lexi had her blood drawn, she was in and out of sleep, she had family visit her and she received gifts.
At 7:38am the nurse came into the room and told us that it was 'time'. Her sister and brothers told her good-bye and we all gave her kisses. I handed her over to the nurse and watched as they walked away with our little baby girl. Lexi was so brave, she did not shed one tear; Rick and I were a different story. We walked out of the double doors into the breezeway and broke down. What just happened? Our sweet baby was about to have her little chest cut open and put on machines and operated on and we had no control over what was about to happen to her. We couldn't hold her hand, we couldn't rub her forehead, we had to wait and wonder and worry.
After we arrived in the waiting room, we noticed a little monitor that kept us updated with almost everything that was going on with our Lexi. Our eyes were constantly on this screen. In addition, the 'heart' nurse would come down to the waiting room and update us every single hour; all was positive news. The most positive news was when they told us that she would only need one heart surgery (I'm still knocking on wood)
Almost 6 hours later, the heart doctor and nurse came to the waiting room and told us that her heart repair was complete. 15 minutes later we were able to finally see her roll by as they were taking her to the ICU. Lexi was wrapped up with tubes coming out of everywhere and she was sleeping so peacefully but the first thing I noticed was how incredibly PINK she was. Our child was PINK! We lived with her being a bluish color since her birth that this new PINK color did her well. She was beautiful!
This picture of Lexi was after a week of surgery. I chose this one so you could see how PINK she became!
Lexi stayed in the hospital for around 2 weeks and a few days. Sadly, during her recovery she came down with an infection and had to stay much longer. SN- She had to stay in ICU in a sort of covered hallway breezeway the entire time during her stay (except on the last day) because this was in Aug of 2005 when Hurricane Katrina happened. The hospital did not have any beds/rooms because of this. After two weeks the doctors had Lexi on medication that they were giving her through a PICC Line. Finally after being done with being at the hospital and not being able to spend the night with our child and not having a room, I had to speak up and ask the doctor if this procedure could be done at home. Thank goodness I spoke up because the next day, we were discharged! I truly feel that recovery is sometimes best done at home.
This picture is right before sweet Lexi gets to go home. Look at the first picture of her and her daddy and compare it to this one. What a difference a repaired heart can make ;-)
Written by: Aimee Fauci
Ahhh, what a sweet little girl. Both my children had to have surgery at 6 months and I can say without a doubt those were two of the longest, hardest, most emotional days of my life. I commend you for journaling through it. I just sat holding my breath for hours. I heart the pink babe! :)
ReplyDeleteI can't imagine having to go through this. I am so glad she is doing well on the "pink" side now. Love that you documented your journey and I adore your tagline.
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I cannot what it must be like to go through this as a mother! Such bravery. She looks so happy and healthy.
ReplyDeleteWhat a great story to share. I'm so glad she is doing well and will continue to get better. Prayers for your family!
ReplyDeleteWhat a gorgeous girl-princess! How grateful you must be. What a great place you must be in to now look back at such an incredible journey. Certainly Valentine's Day must be huge in your home!
ReplyDeleteOh gosh, what a difference in her skin tone! I can't imagine sitting and waiting as your baby goes through surgery, let alone heart surgery. I'm so glad that it went so well, and beyond impressed that they kept you continuously updated throughout the op. Thank-you for sharing your story--and what a brilliant week, when we're all thinking of love and over-the-top hearts, to raise awareness of CHD.
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Wow!1 I can't imagine having to deal with that with such a small child. But what a blessing that she is healthy and growing strong. And what a cutie she is too.
ReplyDeleteHow amazing to see such a difference! I've been reading back through your/her story and can relate to some of it. Being told there's something wrong, the tests, the absolute terror…and to have to deal with Katrina on top of such a nerve-wracking time. Thank you for sharing your story. #SITSBlogging
ReplyDeleteHoly cow -- I don't know how you survive something like this emotionally. She is so beautiful. I'm so happy for you.
ReplyDeleteWow! I can't even imagine having to go through something like that with one of my kids. You are so strong and brave. I am glad to hear she pulled through and is doing well!
ReplyDeleteWhat a beautiful little flower. Thank you for sharing this incredible journey that your family went through. You are a strong woman and mother. It was great checking out your site.
ReplyDeleteCheers,
Char
#SITSBlogging
So glad that Lexi is in the "pink" of health now, Aimee! Thank God for bringing your entire family through those challenges.
ReplyDeleteI am so thankful she was healed. What a precious little miracle!
ReplyDeleteAs a mom whose daughter has had several cancer surgeries, my heart was right there with you all the way through this post. So thankful for medicine, doctors and healthy pink babies!
ReplyDeleteI´m glad that your little Lexi is doing well. What a brave and strong family you are!
ReplyDeleteHugs
#SITSBlogging
What a lot to deal with, but what a cutie!
ReplyDeleteWow. How scary. I am glad the surgery went well. Yes she really was blue from the photos on your blog. Amazing. Glad she is doing better.
ReplyDeleteSuch an adorable little girl! I'm glad she came through okay! #SITSBlogging
ReplyDeleteI could not imagine how this felt for you and your husband! I am so happy that she was healed and her precious little heart was repaired. Such a miracle!!! Much love and many blessings to you and your family.
ReplyDeleteSo happy the surgery was able to go so well and fix everything. What was wrong with her heart? I have what is called Shone's syndrome and have 4 different things wrong with my heart. I had surgery at 9 months and then open heart surgery at 5 years old. Today I am perfectly healthy and strong and just have premeditate before I go to the dentist.
ReplyDeleteShe was diagnosed with tetralogy of fallot. Thankfully she appears ok but we still have a panic attack before each dr heart annual dr visit. Wow... open heart at 5 yrs old? I'm sure your parents were a bundle of nerves! I think it would be harder if our lex had been older.
DeleteShe is absolutely adorable in everyone of those pictures but she looks even better as a pink baby lol :) I'm so glad that everything went well for Lexi and for you and your husband as well. My husband and I are familiar with the NICU and while it is not my favorite place, it felt incredible to know that it was there when we needed it. #SITSblogging
ReplyDeleteThis is such a sweet story and I'm so happy that Lexi did so well! I've been lucky and never had to go through anything like this with either of my children and I can hardly imagine the stress and worry that go along with it. I think keeping a journal of some type was an awesome idea so that you, and Lexi can reflect on the events at a calmer, more secure time. Thank you for sharing! #SITSBlogging
ReplyDeleteI'm so happy for you that Lexi did well in the surgery! I can't imagine how terrifying that would be for parents to endure! Visiting from SITS Comment Love Tribe!
ReplyDeleteWhat a difficult thing to go through. I can't imagine. So glad it all came out OK.
ReplyDeleteYou have a very beautiful daughter and I can't imagine what you guys went through. Kids are so precious, it's hard to see them going through surgery. #SITSBlogging
ReplyDeleteWow. She is beautiful. those eyes! What a heart wrenching experience to have to go through though. What a blessing everything went well.
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What an inspiring story. Thank you for share all of these post I am sure it is comforting to many going through the same thing. One of our nieces just went through a similar thing and this would have been great comfort for her. #SITSBlogging
ReplyDeleteYou are so blessed with such a gorgeous little gal. So glad everything went well for you. I would have been an emotional wreck. #SITSBlogging
ReplyDeleteWhat a beautiful girl! I can only imagine how hard it must have been to go through something like that. I love that last picture where she looks so happy and healthy!
ReplyDeleteWhat a beautiful girl! She has gone through a lot, as well as, your family. I can tell you guys are strong. :)
ReplyDeletehttp://ahleessa4realz.blogspot.com/
#SITSBlogging
Wow, what you been through! I'm so glad things have turned out well for your daughter. I agree about recovering at home, whenever possible.
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What a thing to have to endure! For baby and mother. I had a daughter with CHD, but unfortunately she passed away after two days.... due to complications from other things. You are so blessed, and she is beautiful! #SITSblogging
ReplyDeletei am so sorry to hear about that. I have a friend that started a memorial fund for her daughter that passed just days after being born to raise awareness.. http://hope4tinyhearts.com/hope/about
DeleteSuch a scary thing to have to go through with your child. I'm so thrilled the surgery was successful and she is pink all over! #SITSBlogging
ReplyDeleteAlison
Nancherrow
What an experience. Something no child or parent should have to go through. God Bless !
ReplyDeleteAmanda @http://livinginhismercyandgrace.blogspot.com/
#SITSBlogging
I really enjoyed this post. Thank you for the inspiration!
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So glad that the repair went well! She looks like such a happy baby in all the photos! :D
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Wow, what a journey your family has had! Thank you for sharing your story. These are the ones that offer such hope. #SITSblogging
ReplyDeleteYou little Lexi is so beautiful! You and your husband are incredibly strong people. May God bless you and your beautiful baby girl, and may He grant her a long and happy life. You all are amazing, best wishes to you. #SITSBlogging
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