Bentley was very upset about her follow up appointment today. She had other things she much rather be doing.. but she had to go. I forgot my camera so I took a few not so great quality photos from my phone. Here is the one where she is letting us all know exactly what she thought about being back at the hospital.Now here are a few photos just before her follow up. And of course wearing one of her beautiful Bentley Bows by my dear friend Noelle with Glam R Baby! Many more pictures of her wearing the others coming soon!!
Now about the appointment..
Cardiologist says Bentley is doing well. Praise God!! Everything looked as it should a week and half after surgery. She goes back at the beginning of July for her next appointment.. and and shortly after working our way up to yearly visits. Then he informed us at about the age of 15 they will start watching her pulmonary valve closely to see if it needs to be replaced. I was a little heart broken by this because the surgeon said she will probably be about 50 before another surgery... BUT I can't complain... after all it is a good thing they will be watching closely. It is routine with TOF babies... it is not a for sure thing that she will even need surgery again, just as it is not a for sure thing that she will never need surgery again. So whether it is 15 years, 30 years, 50 years, or never... I know He will be with us.
And Bentley does too!
I have so much more to post about, but I need to end this one here.. Also there will be a giveaway soon.. hopefully the beginning of the week.
I forgot to mention that Bentley is home bound for 6 weeks after surgery, so we have about 5 weeks left. Only other major intructions.. we cannot pick her up under her arms, or hold her by her arms. She is able to crawl and pull up as she wishes.. which is a huge relief because the girl started doing this in the hospital and we couldn't stop her then so I know we can't stop her now!
She is so beautiful. She truly has the face of an angel! So happy for you guys that Bentley is well and going home! Praise God!
ReplyDeleteOh sweet little thing! :D I'm glad she's going home!!! :D
ReplyDeleteI thought that her bow was like a strange halo of brown with her crazy blond hair mohawk peeking through at first before I realized it was a bow on her little head. Oh camera phones don't do it justice, I suppose. lol I feel silly now...
Oh my word, can I please just eat her up?! She is absolutely precious! What an awesome report...YAY Bentley! Still praying!
ReplyDeleteI love hearing all the good news. Picking her up will be tricky, but I am sure they instructed you how. So glad you are home safe and sound.
ReplyDeleteCute pictures of that sweetie!
So glad to hear she continues to do well. What a blessing!
ReplyDeleteSuch fantastic news!! I am thrilled to hear that you are home and I am sure your other 2 are so excited that you are one big happy family again! Yay for Miss Bentley doing so well :)
ReplyDeleteGlad to hear that her follow up went well! The pic of her getting her EKG brings back sooo many memories! Vaeh used to scream through those, but now its become a fun little game:0)
ReplyDeleteAs for talking about future surgeries... it stinks because they're "fixed." The good thing to think about is that by the time she may need a vavle replacement, they'll probably be doing them by cath procedure, which in the world of hearts & surgery is really no big deal (Vaeh's had 6 caths & 3 OHS so far...)
Congrats on getting home & her looking so great!
PS - it works really well if you 'scoop' them up during that lifting restriction. Put a hand behind her shoulders & then under her bum!
I'm so glad that you are home. I am continuing to pray for you all during her recovery time!
ReplyDeleteI'm so glad ya'll made it home safe. I know that things will be much more smooth now that ya'll are home! The raffle was so much fun and I had fun helping!!! Can't wait for Bentley to be able to play, we will deff. have soem fun this summer :)
ReplyDeleteWelcome home Bentley! I bet it feels good to be back home and see the other kiddo's. She looks great in those pictures!
ReplyDeleteChristie
Fantastic I am so glad for how things have gone. She is a real little trooper. I can't imagine how hard this whole experience has been but at the same time what an incredible journey to reflect upon and see God's hand in. We have been so blessed by Bentley's story we continue to pray for her and thank God for his healing and we continue to pray that He will meet all your needs. She is a real sweetie!
ReplyDeleteBlessings!
Crystal, Add me to the list of those who are rejoicing! I am so glad that Bentley did well at her check up and that you are home!
ReplyDeleteI praise God for answered prayers.
Yes, you will need to keep her safe,...away from sick people and germs. (Homebound as you say)
Our little Anna had to be kept away from people for quite some time. But eventually was able to go out in the public.
She is adorable! I am so glad that all went well.
Continued Prayers,
Linda @ Truthful Tidbits
So glad you all are home!! Sounds like Bentley got a good report. Continue to heal and recover.
ReplyDeleteStaci
She is just as cute as she can be! Bless her heart in the first picture :( I'm glad ya'll are home and everything went wonderful! She is a strong baby girl and ya'll soared over this mountain and all did amazing! Still praying for you and your family!
ReplyDeleteYea! You are home! I'm so glad to hear that everything went so well and that you are reunited as a family! She must be one strong little girl... I can't believe how quickly she recovered from such a major procedure! I hope you can rest up and enjoy getting back to life as "normal"!
ReplyDeleteShe looks great! Didn't God make our bodies so amazing that they can go through such a huge surgery and a week and 1/2 later she's already pulling up. Wow!
ReplyDeleteKy was not a fan of the EKG either. She would scream so hard that they could not even get a reading! This time when we went back... she laughed... she thought it was funny! So... Bentley will get there!
ReplyDeleteWhen we came out of the recovery period our surgeon told us that Ky would likely need a revision sometime between 6-10 years old. We were SUPPOSED to be on check ups every 6 months until then BUT... God is bigger than our plans. I told you that Ky just got "released" by her cardiologist a few weeks ago and not only does he say that she will likely NOT need a revision... but he does not want to even see her again for a year!
God is Good... I am praying that He will continue the miracle that He began in Bentley.
About being homebound. Feel free to be completely neurotic during this time. You have an excuse! I posted a note on the door that said "For deliveries... unless this is signature required... do not ring the doorbell... we will not answer!" And our family knew... there was a bottle of hand sanitizer at the door as well as new socks. You take off your socks (because Ky was crawling by then too and I did not want germs on her floor) and sanitized your hands and then straight up the stairs to WASH your hands! LOL Yes... neurotic I know but my kid has also never drawn a "sick" breath until a month or so ago.
I am just so happy that you are home and that Bentley is doing well.
Hugs and prayers!
Amber Schmidt
http://family.kentuckystudio.com
What a testimony to God's power....He answered our prayers above and beyond what we all hoped for. I am so glad to hear that you are home. I know it must feel so wonderful! I bet she was so excited to see that you were actually going home again! :)
ReplyDeleteI am so happy you all are home. I am sure you loved on your your older babies like crazy! When you get a chance I would love to email/talk about everything. I am so happy with your 1 week stay. SO GREAT! Bentley is absolutely beautiful! Our girls are such friends and they dont even know it! Take Care girl!
ReplyDeleteHello!
ReplyDeleteI'm mom to Juliet, a CHD survivor. She had transposition of her great arteries, and we have a family friend who's grandson is having surgery soon for ToF. our blog: slatosky.blogspot.com and she has a carepage "julietslatosky"
I am so glad that Bentley is doing so well! Our daughter had her OHS only one week after she was born, so it's so great that Bentley is older than that!
Juliet is doing AWESOME. Bentley will too!!!
<3 Amber
I just found your blog via someone else's blog and I am so glad I did. Your daughter is beautiful and you are doing an amazing job.
ReplyDeleteI have been reading along and I am so happy surgery went well and you are home now!
ReplyDeleteI remember having the hardest time NOT picking my son up under the arms- it's habit! It will be such an amazing gift when your appts with the cardiologist come less and less often. Braden is 6 now and we only go every two years!
PS I LOVE her name- it's what caught my attention initially. It was the tippy top of my list if this baby had been a girl not a boy! So cute.
I am so glad that you guys are home and that she is doing great! She is just so precious! I love to see her smiling!
ReplyDeleteSo glad you are all home together again! Take a deep breath, relax and enjoy it!!!
ReplyDeleteHugs and prayers!
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