It's time to tell everyone that if you are planning on sending us anything please send it to Texas. We have bought plane tickets and have tentative discharge date. It all depends on how Ruby handles her last morphine wean. She's getting one dose a day rightnow. Depending on how she slept last night, she might get her last dose this morning. Then we need to go 48 hours without a rescue.
Chris and I are excited and scared. We finally might be able to bring our little home! She will require extra care, but not as much as we had planned on. We were sure we would go home on oxygen and sildenafil for her PPHN. Instead we only have to go home with a feeding tube. Ruby is going home on a diuretic and her doctors in Austin will work with her doctors here to wean her off of it. Her medicine and feeding schedule will be tough for us for the first couple months. We are hoping that once we get home the whole family will be more relaxed and eating by mouth with go more smoothly. Her reflux is responding to prilosec very nicely. It still happens and it's hard to watch when it does. Her little face crinkles up and she cries. She is good about managing it on her own, she keeps herself from throwing up. It's amazing how strong she is. We've been told that she will eventually grow out of it. I want to stress that all CDH babies have reflux and often have it longer than healthy babies.
We are taking advantage of the extra days in the hospital to get some follow up tests done. It's going to be weird to have to take her to a special place for an x-ray or ultrasound. We specifically asked for another head ultrasound. Just to check on things before we leave. Since she was on ECMO so long, if there are any problems we want to be within easy access of some the top pediatric neurologists in the world. We haven't talked about it here, but Ruby did have a brain bleed the last day she was on ECMO. We didn't mention it because we didn't know how it would affect her or how severe it was. We didn't want it to become an excuse for any future problems she might have. While we knew we would love her no matter what, sometimes society can be tough on those who are different. Plus quite frankly we had bigger things to worry about at the time. We knew it was a possibility, but our other choice would have been to refuse to put her on ECMO. Luckily her bleed was a grade 1 and in an area that doesn't control emotion or reading. The bleed has almost resolved itself. We've been told not to worry and a lot of babies have bleeds much worse just from birth and turn out just fine. We want this website to be resource for other CDH families as well a way to keep our friends and family updated that's why we've decided to go ahead and talk about it here. Plus, after her latest assessment we are confident that the bleed isn't affecting her developmentally. So yet again our little Ruby fought something and won. This also proves further how much ECMO was a necessary evil.
Now for the star of the show.
Ruby was trying her new shades in preparation for seeing the sun for the first time. As you can see I treated myself to spa day which included a hair cut. Ruby and I both need to look good for her big day.
Waaaay Cute!!! My God, she
Waaaay Cute!!! My God, she really is just adorable. Love the cheeks on her. So glad that you shared about everything...she is really a blessing. Chanda
WOW... LOV THE PIC! SO
WOW... LOV THE PIC! SO EXCITED ABOUT THE NEWS.. CAN NOT WAIT TO SEE ALL OF YOU! BTW HOLLY HAIRCUT LOOKS GREAT!
XO
JOANNA
I love the sunglasses. I'm
I love the sunglasses. I'm so happy she's going home soon!
CHEERING IN SAN
CHEERING IN SAN FRANCISCO!!!!
Way to go, Ruby girl!!!!! You are one super little girl. Train your parents early because they are in for a ride of a lifetime. Good luck to all of you.
HAPPY DANCING IN ST
HAPPY DANCING IN ST LOUIS!!!!!!!!!!
She's amazing - fighting all she has, overcoming all she has, and not being affected by a very scary brain bleed. This girl is going to take Austin by storm. :) And, the rest of her life...
Can't wait to hear when you are boarding the plane. And Holly, you look fantastic, ready for bringing her home. You know what, though? Even without the super cute haircut, you look radiant - there is true happiness on your face and you are glowing.
Love,
Tami, Chuck, Aisling, and William
That's wonderful news!!!
That's wonderful news!!! Cool shades, little miss superstar, and I love your haircut, Holly!
What great news!! I love the
What great news!! I love the sunglasses, too, and Holly, your haircut is perfect. You look great. Glad you got in a spa day.
Congratulations! I have
Congratulations! I have followed your blog since Ruby was born and am so happy and excited for you! My husband and I are expecting our first child (boy- Andrew) the end of September. He has left sided CDH with stomach and intestines up, liver down and will deliver at Duke. I read your blog every afternoon to give me hope! Thank you beyond words for sharing!Hoping for a lifetime of happiness for your family!
I have followed your story
I have followed your story over the past few months. Our daughter Avery is fighting CDH as well as a heart defect. I am so encouraged that you guys are able to head home! Congratulations on all your hard work!
Love from Arkansas-Carissa
visit us at keepingupwiththekeirsys.blogspot.com
Yeah.
Yeah.
Texas can't wait to welcome
Texas can't wait to welcome Ruy home!
Such great news! My heart
Such great news! My heart is overflowing for you three. Ruby looks great in her shades! Such a cutie!
Marie
I'm so happy that you so
I'm so happy that you so close to taking your baby home. I have been reading your blog since Ruby was born, but have never left a comment. I am friends with Missy Leone and saw your blog address on her facebook page.
You have an amazing little girl! I am always amazed at the strength of NICU babies. Our daughter was born at 27 weeks and was in the NICU for 2 months before going home. We were very lucky she didn't have any of the medical issues that you guys have faced. But I understand how exciting/scary it is to think that you might be leaving the hospital soon with your baby. My daughter and I pray for Ruby every night and I hope the rest of your hospital stay and journey home is smooth and very uneventful.
Congratulations, that is the
Congratulations, that is the greatest feeling to finally get to bring your angel home! You all sound a lot like us, the only thing we brought Weston home on was a NG tube, so yeah. Go Ruby, you are amazing. Praise God and you all have a safe trip home :o)
Yay, yay, yay!!! I am
Yay, yay, yay!!! I am totally doing a happy dance in my cubicle and all my work friends who keep asking about her are so happy to hear the good news. John Deere is on Team Ruby! :) Her future is so bright, she's got to wear shades. And that haircut is super cute, Holly. Love and hugs from IA.
Congratulations! I'm sure
Congratulations! I'm sure you are a huge ball of emotions right now. Thank you for sharing the nitty gritty details of Ruby's life in the NICU. Love you all, Sarah
Holly, I love your haircut!
Holly,
I love your haircut!