As many parents have been celebrating or are preparing to celebrate graduations from preschool through college, we celebrated our own graduation of sorts today. Clara was moved from the Neonatal Intensive Care Unit (NICU) to the Intermediate Nursery. This is a big promotion and (hopefully) our last stop before home. Twenty-four hours ago, I was writing about unknown sicknesses, new IVs, stopped feeds and potential scary unknowns ahead. What can I say? Clara has an amazing team of prayer warriors and we serve an amazing, gracious and loving God. We’ve said it before on this journey and we are saying it again tonight: What a difference a day makes.
This morning my dad was getting in his usual early morning visit when my cell phone rang and he was asking if I was on my way yet – Dr. Yang wanted me to breastfeed. I was shocked since we’d stopped her feeds last night and still didn’t know the source of her bleeding, but of course I quickly gathered my things and headed straight to the hospital. Clara didn’t nurse great this morning (we are still working on staggering her feeding schedule with her morphine schedule so she’s not too sleepy when it’s time to try to practice eating), but she did better during our other attempts today. During rounds they made several progressive decisions that I was hopeful for, but honestly not expecting. Since her labs from yesterday came back negative for infection and her x-ray looked clear, they are assuming that the bleeding is from a milk protein allergy. It’s a diagnosis of exclusion, so we can’t really be sure, but that’s what we’re going with. She only had one poopy diaper today, but it was blood-free, so hopefully that issue has been resolved! They resumed her feeding tube feeds right where we left off yesterday (76ml of my breastmilk - now dairy free - over an hour every three hours) and said that I could try breastfeeding three to four times a day to supplement that. We reduced her ativan dose from 1.3mg to 1.0mg although it is still “PRN” or just “as needed” and she hasn’t had a dose in over 24 hours which is great. She may be telling us she’s done with that drug altogether. We also turned her flow down to 800cc and she’s been at 21% oxygen and maintaining O2 sats of 100% or close to it this afternoon and evening. They stopped those IV fluids and hep-locked her peripheral IV in her hand. So they said she could be “intermediate green” and since there was a discharge today and a room was available, we moved. We just wheeled her little crib down the hall while my mom sang Pomp and Circumstance and we celebrated with Clara this next big milestone.
Her new room is semi-private. She shares it with two other babies, but it’s a smaller, quieter and calmer space. There’s one nurse to those three babies and I can tell already that we’re going to be very happy here. They’ve encouraged us to take over as much of her care as possible and prepare for her coming home – that’s what this intermediate stage is all about. We were already changing her diapers and taking her temperature and helping with many things at her bedside, but now we’ll be able to do even more. We will just focus on the last few things that have to happen for her to get home – weaning of her morphine and her oxygen as well as sustainable feeding. Such good progress has been made with all of those goals. I really believe we’re on the fast track home.
I know you’ve missed out on Clara photos this week, so I’ll catch you up on several days’ worth.
|Beautiful wide, alert and open eyes|
|So cute in her fishies|
|Watching her mobile, no doubt|
|Clara smile! Common, but difficult to capture on camera|
|Such focus in her eyes|
|I really love baby feet|
|And I love patting ruffle butts|
|Ready for the beach in August with my crab outfit|
|Sleeping soundly, snuggled up with blankets, lovies and my paci. Life is good.|
|A little "tete-a-tete" with Bigdaddy|
|This big man loves this little baby so much|
|Clara and me with Martha, the lactation consultant, who has worked so patiently, lovingly and passionately with us.|
|Dr. Yang! The attending who has worked so hard and brought us so far. She has been Clara's doctor for most of her five weeks in the NICU and is to be thanked for her diligence, her commitment to excellent care, her critical thinking and problem solving and her dedication and drive. We wouldn't be where we are today without her and we will miss her very very much. Today was her last day of service.|
|I should also mention that Dr. Yang really loves Clara. See it in her eyes?|
|Goodbye, NICU Pod A!|
|Hello, Intermediate Nursery Pod F!|
|Clara is hot-natured like her daddy. Sometimes a girl's just gotta strip down.|
A friend who has a five year old CDH survivor sent me this message from her child today:
“WHEN are we gonna get this baby home to her regular bed??!! Do we stop praying for Clara after she gets home all better? I'm not. I might pray that her Mommy even buys her candy. No, Clara is too tiny to eat candy."
It may be a few years before Clara can eat candy, but we appreciate your continued prayers for her full recovery so she can get home soon to her “regular bed.” God is faithful.
Your love, Lord, reaches to the heavens, your faithfulness to the skies. Psalm 36:5
Lord, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done wonderful things, things planned long ago. Isaiah 25:1
Clara might make that June first deadline after all! What do you think prayer warriors? No, we will not stop praying once she goes home.(even if her Mommy buys her candy!)ReplyDelete
Look out for Mabel who is one of the best nurses I have ever worked with. I love intermediate care, its a great place. So happy for Clara!ReplyDelete
Yep, Clara is a chip off the old block. You just don't laugh at those Hardys -- those Hardys get the last joyful laugh! :-D And it's only May 19. YAY, Clara! Don't you just love it when what you hoped and didn't expect actually happens? So exciting! Giving thanks with you and thrilled that Clara is getting mama's good milk again.ReplyDelete
So happy for the Hardy family! A new home, praise the Lord! Keep up the amazing, awesome work Clara! We continue to root for you, pray for you and send love to you each and every day! Can't wait to see what tomorrow brings.ReplyDelete
That's our girl!!!!! SO PROUD!!!! -RebeccaReplyDelete
Super news! I have been praying about that blood in her stool...she is covered in prayer...our Lord and Savior is surrounding her in His arms! LOVE, Mary AnnReplyDelete
And God looks down from above and says...."all in a day's work, Clara.ReplyDelete
Love you all. We will pray and praise you all forever. God is so great! And as expected, Clara is as adorable as ever. Love the clothes, but I love the" naked baby" pictures too. So sweet, her laying on your shoulder, Chrissy, in only her diaper...hahaha.
Yayyy for boobie juice! So sweet, that nursing! Wow!! So much to be thankful for. Thank you God!
I've got the best image in my mind of your mom singing Pomp and Circumstance and wheeling Clara down the hall. That makes my heart happy! Such good news today! I'm assuming those fish pjs are from Carter's? :) Keep on loving sweet Clara and I'm praying for your June 1st "deadline" to become a reality. (But hey-- if it's June 2nd-- that's ok too-- that's my Mom's birthday and I know she'd be so happy that your baby was going home!) Love you.ReplyDelete
Have I told you lately that she's lovely?ReplyDelete
Wonderful news to start the day AND you've put today's song in my head with Psalm 36 (Thank you Third Day and Chrissy!) "Your love, Oh Lord, reaches to the heavens; your faithfulness stretches to the sky; your righteousness is like the mighty mountain; your justice flows, like the ocean's tide. And I will lift my voice to worship you my King; and I will find my strength, in the shadow of your wings!" -- I LOVE the all snuggled up for a nap picture! Life IS good! - :):):) Karen KReplyDelete
Susie stole my comment thunder. My mental picture (and the audio one...if that makes sense) of your mom singing as y'all paraded down the hall is so priceless. In my head she was marching. :) YAY for intermediate! :) GO CLARA! Love, RebeccaReplyDelete
wow, i love witnessing miracles!! God truly has amazing things in store for this beautiful little girl.ReplyDelete
I'm so happy to see Clara in her new room. She is one tough cookie! She is absolutely adorable. You look so happy too, Mommie. Can't praise the Lord enough for all He's done for your family. You have truly been blessed! Keep up the good work, Clara.ReplyDelete
The sun is finally shining INSIDE as well as OUTSIDE! Let those old, gray clouds roll away and summetime grant all it's warmth and special fun to The Hardy Family. I think the BEACH is a reality ..... whee!!!!!!!!!!! and I bet Miss Clara already has a bikini :-).ReplyDelete
So excited for you all and sweet Clara! I love seeing those beautiful brown eyes. :)ReplyDelete