This has to be really quick. Chloe has, indeed, kept us on our toes these past few days. She's doing well, though, and we are sooooo thankful and blessed to finally have her at home with us where she belongs. I want to share so much of what we've experienced over the last few days but I'm still trying to figure out a way to function with our new addition. Let's just say I didn't do too well the first day. I spent two out of every thee hours feeding Chloe and pumping. Chloe can't really leave our bedroom because we only get 20 feet of tubing for her oxygen (they say that longer tubing won't work with such a low flow [1/8 Liter]) so I rarely leave the bedroom. I've reduced her feeding time to 30-45 minute increments and I'm only pumping every 5-6 hours now. We'll figure it out. We're just glad to have our little angel home and doing well. Home for the time being, that is. We have a deluge of doctor's appointments coming up: We've already been to the Pediatrition (I thought she was sick but she's not), Pulmonologist, Surgeons follow-up, Opthamologists, Feeding Therapist, and the Help Me Grow people already want to come and assess her for the HMG program (a state run program that will assign us a case worker who will follow Chloe until PreK and make sure she's developing and making milestones). This ought to be interesting. We're entering a whole new world of premie development. I'm not even close to ready for this (I've only had 5 months to prepare myself but...whatever..) But we'll figure it out along the way...
By the way, my bff Angla went with us to the hospital on Monday to photograph. She said she took over 700 pictures! I won't upload all... She also made an amazing slideshow of Chloe's NICU time that already made me cry twice. I'll share the youtube link as soon as I get it.
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I remember those first days at home and as grateful as you are to have her home, it is rough. Especially when attached to oxygen. Make sure you sometimes carry all of it with you into another room. I didn't for a long time and sitting in the same room and same spot for days made me so depressed. I used to dream of being able to pick my baby up and carry her from room to room, not attached to anything. The day will come, however. Thinking of you and I'm so grateful that she's home.
ReplyDeleteYaaaaaaaay. I am so happy for you. Don't worry, things will settle down with appointments. I remember the first few weeks it was every other day. D came home on 1/10 L and we use as much tubing as we wanted... Weird. Did they give you a tank on wheels? At least that might give her a little freedom. You are superwoman for doing it all AND pumping!
ReplyDeleteSo so so so happy that she is home!! That first little while with them home is so wonderful, so busy, and so stressful! I was so sad when my milk dried up, but I'll confess that once he was home, I thought many many times how relieved I was to not be pumping on top of everything else. You are super human! Can't wait to see the pix you post and hear the updates as you find time to make them... you know, eventually :) Congratulations to you all!
ReplyDeleteOh wow, that brings back memories! We too had to keep Rhys on one side of the house because the tubing for the O2 concentrator wasn't long enough to move him all over. He didn't see his room for months. For what it's worth, we had nearly 40' of tubing and just increased the O2 flow a bit so by the time it got to his nose he was getting the 1/4 liter he needed. The doctors were very adamant about getting over looking at saturation numbers and watching Rhys's breathing and color to guage his oxygen needs since he clearly wasn't going to be hooked up to sensors 24/7 like he was in the NICU. Anyway, if the 20' becomes too much of a problem perhaps you could try it that way. It really helped to be able to move him around a little more into the living room etc. You'll figure it out! Congrats to you guys, that is so great she is finally home. Best of luck the next few days trying to incorporate your new bundle of joy into the fold. :)
ReplyDeleteYAY! YAY! YAY!!!
ReplyDeleteYou are doing so great, Cyndi!!! I think you're an AMAZING mom!!!!
ReplyDeleteI'm so happy for you guys! Can't wait to catch up soon! Love you!
ReplyDeleteI am SO HAPPY FOR YOU!!!!! My first day I was a bit dramatic and overwhelmed too but it's all worth it!! We came home on 1/4L and one company told us that same thing but then we went with a different one (because of our finicky insurance) and they told us that the tubing amount didn't matter. We had a 50 ft. tube and D was fine. Our concentrator didn't go lower than 1/8L so now I carry a tank around in a bag. On 1/32L our tank lasts about 8 days and D loves chewing on the tubing. :) She's so used to it. I can't wait to see your pics but take your time! Enjoy every sleepless minute!!!
ReplyDeleteCongratulations and welcome home Chloe. I can't relate to the oxygen thing...my prem didn't need it but he wasn't so wee either. I can relate to being away from home for so long that you don't know how you and the baby fit in....from our TTTS diagnosis till the time Cameron was home and 'normal' resumed I felt like I didn't belong anywhere!
ReplyDeleteSo glad you are all living as one wonderful family under the watchful eye of one lovely little angel.
Sounds like happy chaos!...soo happy for u!....@ least I know what will be coming when Ayden goes home on the same amount of oxygen!...Cant believe u have so many appointments already!...good luck keeping energized along the way...miss u guys already!
ReplyDeleteI was so excited to give this news to the ladies in Bible Study this morning. There were tears, cheers and LOTS of praises! They all know it's not over yet, but this is what we've been praying so hard for! Chloe's home!! whoop whoop!!
ReplyDeleteWow! I loved your post, but even more, I loved reading all of these amazing comments. What an amazing support system you have, Cynthia! And such great personal accounts, feedback, and information!
ReplyDeleteI can't wait to get there in a few weeks and be Chloe's first official babysitter! I feel like the luckiest aunt in the world!
Oh no! I forgot to say "I love you." I never forget that...
ReplyDeleteI love you!
-L-
Oh, honey, I'm just so happy! My eyes and heart are full. I told Sophia earlier in the week that Chloe was supposed to be going home anytime (wanted to be safe) and she whooped for you and got all happy, too. I can't wait to share the full news tomorrow morning. I just can't believe you have her home with you - that's phenomenal. I can't even begin to imagine what this next step of your journey will be like, but I do know that you, Dave, Solana, and Chloe will meet it with faith and grace and humor.
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