Any way its just frustrating/discouraging because no one can explain why her Oxygen needs have gone up so much. The saddest part is that with all this going on, the chance of her coming home before her surgery is pretty slim (which could be 4-5 months), unless something changes, which is what we're praying for. The other hard part is that she just hates the C-Pap. It covers her whole face and she is just so frustrated with it. My heart just breaks as I see my tiny little girl screaming and feeling so restless and there isn't anything I can do to make it better. I just have to remind myself to be grateful that she is upset with the whole situation, because it just shows she is a fighter, and will get through this.
Through it all she continues to amaze us, she is now 3 lbs 13oz. She is such a fighter, and it becomes more and more apparent each day. She is showing us miracle after miracle, and when I look back I can't believe how far we've come, even though sometimes it feels like we're standing still. We're still loving it at the U though, we've had some great nurses and that helps A LOT!
18 comments:
Thanks for the update. We pray for her daily. We love you all!
Yeah, that didn't make a lot of sense to me (and my baby is on O2!). I'm still on information overload. Keeping you in our prayers!
I hate the ups and downs. Nitric is used for pulmonary hypertension. So her pressures must be up. They say she's not in heart failure at all? It must just be pulmonary hypertension. That little stinker.
Oh, and if you have any questions about something you don't understand or just want to vent, call me. We've been there before.
Sorry to hear this, will be keeping her in my prayers. She is gaining weight nicely though.
You keep fighting Kaelyn! Sending love and prayers your way :-)
Sorry to hear about her oxygen needs and difficulty with the CPAP. Even adults have a hard time with CPAP and they actually understand why they need it. You are in all of our prayers. Lexi makes sure to bless baby Kaelyn every time she prays and even prompts us to do the same if we're taking too long to mention her. We love you. Keep up the good fight Kaelyn!!
Oh..baby Kaelyn..although we are on the road right now and I have limited computer time but I can't help but check on your blog often...I hope they find some answers for you soon and that no matter what....Kaelyn just keeps up the good fight and keeps growing.
Kaelyn is quite the fighter. I'm sure the ups and downs are so hard... but we will keep praying for her! She is amazing!
Jeana.. we're thinking about you down here in Texas! I check your blog often and love hearing about how little kaelyn is doing! You look really good in your pic!! and so does kaelyn. Do you like the U or something??? ;) I'm getting that feeling.
Kristen hates the whole oxygen thing too. Even the simple canula freaks her out. She almost had to be sedated when she was in ICU and she needed the high flow. I know the ups and downs can be fustrating but you seem to have an amazing attitude.
This is Joyce, My heart is right there with you. It is so frustrating when you move forward and then it seems like it is a backward slide. It is all heading in the right direction though of eventually getting you home. I love your photo today:)
Patients will pay off! You will eventually find your way home with this beautiful baby girl!
We hope you guys are doing ok. If there is anything that we can do for you don't hesitate to ask. You guys are great friends and we pray for you daily. We love you guys :)
I cannot even imagine how hard this is for you. A first baby is hard enough but then you add all this and...well, STOP THE INSANITY!!! I'm so glad she has improved so much thus far and just know that even people you don't even know are praying for you all. She is such a darling little thing and I feel so privileged to follow her journey. Thank you for sharing her with all of us!
P.S. You mentioned you bought a house in Daybreak and I was wondering if you have noticed if there is a good range of elementary aged kids around there. We are thinking of building there and have a girl(9), boy(6), and girl(1) and want to find an area with more kids the same age and gender. Just curious...Thanks!
Sounds like my Bella - have they talked to you about Pulmonary Hypertension? You have been so positive. All emotions are OK in the NICU! We are praying for y'all!
Never be afraid to post about the bad / ugly along with the good - isn't that what blogging is for???
And yes - the NICU is a total roller coaster. Sometimes it's even 1 step forward and several steps back. I'm a NICU nurse, so I know all about that stuff.
As previous posters have mentioned - the nitric is for pulmonary hypertension. It works by only dilating the blood vessels in the lungs, not the entire body. That's why it's inhaled.
Never be afraid to ask a million questions to your NICU nurses / docs when you don't fully understand something! It's part of our job! Even if you know you've asked the question before, ask it again. You are not expected to be an expert at all of this - this is what we are for.
(I found your blog through several others that I follow, along with my cousin who has blogged about her adoption of her daughter (and soon to be 2nd daughter) from Ethiopia.)
Feel free to contact me with any questions - I'd be glad to help! Kaelyn sure is a cutie and I hope that she starts taking some small steps back in the right direction soon!
Hey guys...Although I'm not very good at posting comments, I want you to know you are always in our thoughts and prayers. As you know the nurses and staff @ the NICU are the very best and you couldn't be in a better facility. We know first hand how hard the "not so good days" are. Fortunately, we were VERY BLESSED, and didnt' have many. Hang in there and stay positive!!! We love you guys!!!
Post a Comment