For those of you who have read patiently but been wondering where all the photos are, I am finally catching up. A quick medical update and then on to the faces of Clara. Our new plan (nurse during the day, feeding tube at night) seems to be working pretty well. Weight is tricky because it'll be up one day and down the next, so it's important to look at 2, 3,4 days or more at a time instead of day to day. But since our singular goal right now is feed and gain, it's hard to not feel disappointed when that morning phone call reveals a loss. I'm especially taking it (probably too) personally because I feel like it's my job to make her eat and gain weight. When she doesn't, I feel like I've somehow failed. She gained 150 grams on Friday (probably rehydration from the 150 grams lost the day before), lost 30ish on Saturday, gained 67 on Sunday, lost 24 Monday. So, we're overall in the black, but would love to see even more steady gain. We've (re)-condensed her nighttime feeds so she receives 90cc (3 ounces) over 45 minutes every three hours. IF she keeps gaining, the tentative plan right now is to discharge on Friday. We'll be going home with that NG tube down her nose and we'll be giving her those 3 ounce bolus feeds through the tube during the night while she rests. Hopefully we can replace those feeds gradually and slowly with breast and/or bottle feedings until we are done with the tube. It was a really tough decision for Robert and me about the tube. We had to decide between this NG tube that has some risks and the G-tube which meant surgery. There are pros and cons to both and I think it was one of our first big lessons in parenthood - trying to make a decision in the best interest of your child when you're not really sure of the future or what the best thing is. In my gut, I believe that she won't need the tube for very long; she's eating great during the day. So, we're going with the less intrusive, but slightly riskier NG tube and praying that she won't have any complications like pulling the tube and aspirating. Having the bolus feeds instead of continuous means that we'll wake up and watch the feed go in her to be sure that she doesn't have any problems. We are so hopeful it just won't last long. If it starts to look like it will be months instead of weeks, we'll probably come back and do the G-tube surgery.
So, these photos have a few from last week when she was totally tube free and we can't wait for that day to return! The rest are more recent since her tube has come back in this week. Please continue to pray that Clara will gain weight. We're going to give one more go at the bottle tomorrow and if by chance she guzzles it down, we could try bottle feeding at night and still potentially go home tube free. It's a long shot, but we know Someone who is in the business of long shots.
Okay, Clara's ready to eat! Off I go. Here are some photos. Enjoy, and please keep praying. Hopefully we'll have some in her "natural habitat" in the next few days.
She's looking so good. What a beautiful little girl.ReplyDelete
Talk about a fashion show ... wow!!! Miss Clara you are just tooooooooooo cute!!!! I KNOW you are eager to get home to your room FULL of clothes and toys ...sooooo..... EAT GIRL, EAT!!!!! I am pulling for you to go home on Friday and I know you CAN!!!!!!!!!!!!!!!!!ReplyDelete
I've been praying for you all since Clara's birth and am so thankful that she is doing so well. She's a beautiful girl with a fighting spirit and I hope she continues to thrive so you can all go home soon. God is so good!ReplyDelete
That is a happy girl!ReplyDelete
She is beautiful!!!ReplyDelete
AND YOU MET DR BLOCK...he is my favorite!!! He wrote my letter of recommendation for residency!! Absolutely fantastic doctor
Gosh, I just love those snuggly, sleeping pictures and that tube-free face. Hope you are all feeling strong for this final leg of the journey . . . almost to the finish line!ReplyDelete
Oh, Chrissie and Robert, she is beautiful! And look at her smiling like a big girl! I like the sound of your new plan. Clara just needs a bit more time, but look how far she has come! I know Dr. Block is happy with her progress. We have known him since before Christina was born. Clara is going to be eating all on her own before you know it. I am proud of you for your diligence and persistence.ReplyDelete
That is the most adorable baby ever!! Still praying for growth...eat girl eat!ReplyDelete
What a happy baby! Keep those miracles coming! Prayers that Clara will start loving that bottle tonight! :) Karen KReplyDelete
Oh, Chrissy. I needed these pics tonight. Everytime I see her, I go back to the vision in my head of you and your momma singing, "Breathe on me Breath of God." It does my heart so good. I am so thankful to the Lord that He decided to work a miracle in Clara's life, and in the lives of so many of us who love her. I cannot wait to hear about major weight gain. Nursing is so hard even w/out all of your challenges. You are doing GREAT. Do not be hard on yourself. Both of my boys lost in the beginning and we had to do daily weight checks, but we got there, and nursed for over a year, and then over 9 months, respectively. I'm praying, Sweet Chrissy!!! Kiss that baby for us. -Rebecca SmithReplyDelete
Yea! That would be a nice way to start the weekend wouldn't it? Hoping and praying... and really praying for that bottle to work for Clara! Thanks for posting all of the pictures-- I especially love that one of her smiling big-- or is she laughing now!? :)ReplyDelete
She is the cutest!! You are in my prayers as always!!! Hoping, wishing and praying she gets to "meet" her new home sometime this week!!ReplyDelete
Well...I LOVE Clara's smile:) I will be praying about the steady gaining ~ so glad she is in the black! I will be praying...Love from Elberton, Mary Ann & ChuckReplyDelete
Beautiful Clara! Praying for you all and continue to be inspired by your determination and perseverance. NatalieReplyDelete
I've enjoyed watching Clara Grow and get so much better. She is thriving and looks happy. Praying for a smooth transition to home.ReplyDelete
Will nurses come to see her at home? Love Sandra
Precious with or without feeding tube. She is such a beautiful miracle for us all. Prayers continue.ReplyDelete
Love to all,
Beautiful, sweet Clara Mae! Put those boxing gloves on and get to gettin!!!! We are rooting and praying for a HUGE weight gain soon. Home sweet home is within reach!!!!! Reach, Clara, Reach!!!!!ReplyDelete
Praying for weight gain and no tubes soon!! Love the pictures. Her expressions are just priceless - what an expressive, animated little girl! Precious. So happy Clara is making such big strides.ReplyDelete
We will pray for her weight gain and eating habits! She is a beautiful baby! love the welsh familyReplyDelete
I was in some serious Clara withdrawal! I feel like I hit the jackpot with all these wonderful pictures. She is beautiful, and I just know she will continue to gain the weight!ReplyDelete
I have been following Miss Clara since birth. I have to say that her journey very much resembles Abel's. Ecmo, weight gain/loss, G-tube vs NG tube. So Abel was discharged on Jan.24th with ONLY oxygen. He was home for 3 weeks when he got sick (Rino Virus & Paraflu) So he was readmitted for an additional 4 weeks. We struggled during this time to get him to gain weight and although I fought and fought and fought to avoid G-tube surgery (I wasn't fond of the idea of another surgery after, ECMO, sternotomy, hernia repair, etc) during his 2nd stay in the hospital we decided (although somewhat risky) that he would go home with the NG tube. I cried. I did NOT want any additional tubes and wasn't sure how it would all work out. Don't tell ANYONE I said this;-) But 3 months later, it was the BEST thing and BEST decision ever. Abel exclusively breastfeeds during the day, he too, is a breast baby (he will NOT take a bottle) and we do continous feeds at night. Please be encouraged. In 3 months, he has never pulled it out, aspirated, etc. We do night time continous feeds so we don't have to lug the little machine around with us during the day. But it is great to know: A. He is getting all his calories (plus more w/ breastfeeding and Stage 1 solids during the day) and B. The NG tube allows for easy access for his meds (Prevacid and Sildenafil) so I don't have to fight him to take them orally. Clara is beautiful and I'm so glad she, like Abel, beat all the odds and pulled through:-))ReplyDelete
Mama to CDH Survivor Abel Kane
17 weeks and 3 days in the NICU
6 major surgeries in his first 5 days of life.
Clara is just beautiful!!!! I can't wait to meet her in person! Reading this blog every night and looking at all of the sweet pictures is such an inspiration! Thank you for continuing to spare what very little free time you have to update here and keep us all in the Hardy Family loop!ReplyDelete
Ah, the G/NG debate. You are certainly not the first parents to struggle with this difficult decision. For Mack, we fought the good fight as long as we could but when it became clear that his feeding issues were going to be with us for months (if not years) we made the difficultReplyDelete
deciiosn to go with the G with a Nissen. We did not make this decision lightly but, ultimately, it was the right one for us since he is closing in on 2 and still requires tube feeds. With that said, I'd hold off as long as you can.
A trick about the NG tube...if it clogs, flush with Dr Pepper. Works like a charm nearly every time1
I am so happy for you and your family! What a blessing....Cheering you on the whole way!ReplyDelete