OK it's not really 4 letters, but add it to the list in my opinion.
Heart Failure.
Two words put together that I really dislike. It sounds awful. It scares me.
Well Ollie has been in the early stages of heart failure for a month. Last month we were put on Lasix once a day. Today we saw our Cardio doctor who is fabulous & he upped her to twice a day. He is seeing more symptoms of heart failure. Her liver is enlarged and she tugs more when she breathes. This just means she breathes harder. Her intake has also went down, but she's still gaining weight. Awesome.
I personally haven't noticed any differences in her, but I'm around her 24/7. Her loud breathing is normal to me, I'm used to seeing her eat the same amount even though it's less than it used to be. It went down when we started adding formula to her breast milk, or that's what I thought caused it. So...if this is heart failure, it's OK. I just wish they called it something else...anything else.
While in Mt. Vernon, I also met my blog friend Jamie for lunch. She was very nice & sweet! I was thrilled to meet her! We both lost our minds & forgot to take a picture! Pray for her to find an awesome job soon!
We go back in May, and he will review her again, and schedule her open heart surgery. It will be in June probably around my 29th birthday. When he said those words today I thought Holy crap. She's 8 weeks old. Two months fly by so fast. I'm not ready for this. I am just not.
Someone may need glasses!
How do I get ready for this? I want to bawl when I think about it. How do I kiss her goodbye that day? How do I stand up straight when they wheel her away? I know success rates are amazing, but it's really scary. So many people are so lucky they never have to know what this feels like. I know there are people out there that still feel sorry for me that Ollie has Down Syndrome. Honestly I don't care about the DS. It doesn't matter. Her surviving this surgery, it's everything. It matters. Down Syndrome is nothing compared to open heart surgery in my book. It's definitely the scariest thing I will ever have to do. I have strong faith. I believe with every fiber in me that God & Jesus are real. I believe she will live through this. I just don't want to live through that day. I want to fast forward through that week.
...but I can't. God is teaching me a lesson. A lesson in faith. A lesson on what really matters in life. A lesson on how to trust and be patient.
Please continue to pray for our family. I need the strength, I know I am weak. Pray for her surgeons & nurses, their hands do God's work. Don't feel sorry for us, we are living God's plan for our family no matter the outcome...just pray for us.
By the way, Courtney, Christy, Becca - you guys have done this & I can't thank you enough for your support & guidance! You are great friends & Moms!
i pray for you guys daily sweet momma.I am so sorry your little sweetness has to go through so much so young,it will be ok.So very scary but it will be ok, and you will get through it just like her because you are a momma a very strong one.I just wish i knew you in person and could hug you and tell you it will be all right but our heavenly father will be holding you rest tight in that.And those pics,just when i think she cannot get anyomore scrumptious...well she does:)that girl is so stinkin cute!!!!!!!!!!!
ReplyDeleteOne day at a time, Missy. Just try to look at it like that when it gets overwhelming. Look how awesome that girl looks, thanks to your good love and care. I want to eat her up! I think stethoscope lessons, needed or not, need to happen soon before I lose it from her perfect cuteness. :) You're doing all the right things...all you have to do is just keep doing them. :)
ReplyDeleteBig Hugs....
Annie I can sit here and tell you to be strong, have faith, and trust in the Lord but I know that this has to be one of the scariest times for any parent. I can't imagine that day for you all and I will be praying my heart out for you and your family. It is unfortunate to think that there are people out there that feel sorry for you that Ollie has DS....can't they see that she is absolutely 100% perfect! Makes me grouchy just thinkin about it. You are so lucky to have such a great support system and faith that is so strong. God will do great things for you all! Love and hugs from the Hardens xoxo
ReplyDeleteOh, I think a four letter word classification is appropriate. I'm positive I SAID one the first time I heard LC was in it. I was naive enough not to realize it was GOING to happen before the surgery came. I literally fell apart in the pediatrician's office...sure that I'd messed up somehow in not preventing it from happening to her.
ReplyDeleteWhen we met Jace, he was obviously in advanced CHF (3 letters is close enough, right?) And I knew it meant surgery needed to happen soon, but it didn't crash down on me like LC's did. I think it's because it becomes such a regular part of your daily life. And you're right...can we not name something that you'll be LIVING WITH for a few months a less traumatic sounding name? Couldn't we? Please?
But the GREAT news is her body is outgrowing her heart's abilities. Which means she's plumping at a steady rate. And, even though you don't sense daily changes, you ARE obviously on top of things. You'll notice any significant changes if they happen. You're doing an outstanding job. That girl is gorgeous and I love those bright, wide peepers of hers. Dollie, dollie, dollie.
I have not had to go through anything like this so I cant pretend to know how you must feel, but my heart really goes out to you. Little Ollie looks like the sweetest baby...I am praying for you and your family.
ReplyDeleteI remember leaning against the wall in the hallway of the NICU and one of our favorite doctors came up to me and asked if I was alright.We had been there almost 3 months,you see zoey was born into heart failure and I also remember that flowing so effortlessly from the doctors lips and me,freaking out.Anyway,As I spoke with this particular doctor that evening I remarked that I wondered how we got to this place and how we would find our way out and she replied"Zoey will show you the way"And she has,every step of this journey and Ollie will be your guide and your faith and God will do the rest.
ReplyDeleteOllie is so precious and that smile,that smile a gift.Zoey neither cried nor smiled for 6 months until her heart surgery.Fight or flight and after the surgery .. a rebirth.You will see.And you will see it in her eyes... they will brighten and sparkle all the more.Promise.
Prayers for sweet Ollie and the rest of you and strength to you as you make your way through the upcoming days.You are doing a great job ... apparent by that joyful little love of yours!
Thinking of you and that sweet (and oh-so-photogenic!!!) little princess of yours. Yes, we've done it, but I don't think there's anything we could ever say to make that hand-off any easier. I get teary thinking of that moment, the moment they took her on the elevator down to ER and we watched the elevator doors close, us left behind on the other side. A little over 2 hours later, the surgeon came to tell us how well it had gone, how we'd be able to see her soon. I just kept looking at his hands, thinking about the miracle they'd just performed on that tiny little heart. Ollie will absolutely blossom after the surgery. The energy and the strength and the growth will astound you, and trust me, she'll never look back. ((hugs))
ReplyDeleteShe's so beautiful! What a gift! I know you're struggling right now, but you're right... trust God! There's a reason for this and you may never know what until you meet Him face to face, but trust! I'm praying for you still! ; )
ReplyDeleteBTW, I had a big scare myself. My husband was in denial that he needed heart surgery (his mitral valve was damaged) and he nearly waited til it was too late. Doc was amazed that he actually walked into the hospital when the surgery date FINALLY came around. His heart enlarged so much that it was ready to stop. The doc was amazing tho, and hubby made it thru! We do have some issues now, but I'm so thankful that the docs didn't give up!
Lotus
Oh sweet girl, you're so right... the worst two words ever heard. Unimaginable that they could apply to our children. I remember the terror when my Jacob heard the words and his eyes full of fear. I remember thinking, I can't do this. But I did and so will you.
ReplyDeleteWe walked him into the OR and kissed him goodbye, praying against all logic that we'd get him back... and we did.... 18 long hours later.
Miracles happen, I don't have to tell you that. You only have to look into the eyes of ALL your children - there's the proof. Your Ollie, she comes from an amazing family, amazing women full of faith and so very strong because of it.
I pray for you every night, with my Rosary beads clutched, faithful that the Blessed Mother KNOWS our fears and She's got our backs.... because She above all others, KNOWS the love we have for our babies.
Blessed Mother, please wrap Your mantle of protection around sweet Ollie... and whisper in the ear of Your Son, so that she will be healed.
You can do this, Annie.....
with love, tears and ever so many, many prayers,
gena
Praying for Gods peace for you and your husband when Ollie has her surgery and for Gods covering on her.
ReplyDeleteErika
Annie, your cardiologist is also OUR cardiologist and while we never got to the point of surgery, we will well pleased with his care. I will pray for your sweet Ollie and for you. God's got this under control, as hard as it is to comprehend.
ReplyDeleteI have never felt sorry for you. One look at Miss Ollie, and I immediately knew just how blessed you are. She is a gift, just like A and E. She is here to bless your lives... and she will come through this with flying colours! She will thrive, and she will continue to bless you for a lifetime! :) :) :)
ReplyDeleteI read this hours ago and have been burdened to comment all day. God is so faithful and so big and so in control of everything. Ollie girl is so perfectlly and wonderfully made (you know that of course).
ReplyDeleteMy little sister should have died when she was a baby. At one point before my parents adopted her she was given 24 hours to live. She is 9 in a month. God really is amazing.
Still praying and will continue for Ollie and for you.
Much love
I read this hours ago and have been burdened to comment all day. God is so faithful and so big and so in control of everything. Ollie girl is so perfectlly and wonderfully made (you know that of course).
ReplyDeleteMy little sister should have died when she was a baby. At one point before my parents adopted her as a baby she was given 24 hours to live. She is 9 in a month. God really is amazing.
Still praying and will continue for Ollie and for you.
Much love
I love her crazy and cute faces!
ReplyDeleteYes, God is amazing and He is doing this so you can learn to be even stronger.
I will pray for little Ollie and for you.
Be strong and have faith. :)
I'm amazed at how she has grown and changed in the past two months! MY faith is strengthened hearing YOUR words of faith. He will give you special grace on on the day you see her wheeled away. I just know He will!
ReplyDeleteMan, she IS growing so quickly. I still think that she looks every bit like you. I understand your fears. Im sorry that this is happening. Its hard to know what to say or how to say it, but I will continue to pray for Ollie, you and your family.
ReplyDeleteI love that you are living God's plans for your family. I will keep your family and precious Ollie in my prayers. You are so strong and a wonderful example/witness to many!
ReplyDeletehang in there mama! She looks so amazing and has done great so far. She will get through all this with flying colors!! God has a plan, I realize this now too! I will continue to pray for you sweet ollie and your family!
ReplyDeleteseriously, i could eat her up!!!
I know there isn't much I can say that will help. Just that I know what a scary thing this can be. Maybe its best when its dumped on you and over within 48 hrs of knowing...that way you don't have more time than that to agonize over what is going to happen. I do know that God has a plan for your precious little girl! She has already changed so many lives and I believe will do so the rest of her life. I am so excited for this to all be over for you so you can watch her grow and blossom! I do know that the God that has carried you through this far will give you grace and strength for the moments when you don't know how you will survive. He promises!! Lean on that and know you are being uplifted daily and that you are all loved!
ReplyDeleteOllie is beyound beautiful. Praying for you all. You will all make it through. No doubts in my mind. I just can't get over how cute that precious girl is!
ReplyDelete