Today, after 25 days in the PICU, Clara moved back to the NICU. The good news is that Clara is doing well, adjusting fine to her new home, receiving more Lasix and peeing great, and already adjusting some of her meds (dopamine gone, others to be weaned soon!). We knew instantly that she will receive excellent care from the neonatalogists and nursing staff in the NICU. I felt today like while we were in the PICU we were just trying to keep her alive. "Boring is good" was our mantra and stable and steady were the name of the game. I think in the NICU it's all going to be about what we need to do to get her home
. The doctors jumped on her right away and were ready to start being a bit more aggressive about taking steps to get her better. Of course, we're excited about that and grateful for this big step forward.
With that said, today was really tough on Clara's mama. I mentioned yesterday how I was anxious about the move and it was with good reason. Not only was it difficult to say goodbye to the wonderful people we love so dearly in the PICU, this was a big change in a lot of other ways. It's going to affect me a lot more than Clara, and this is what is best for her, so I'm going to have to make the necessary adjustments. But today was hard. For my routine-driven, control-freak, type A personality a big change like this was just the straw to break the camel's back on four weeks of pent up stress. I've held it together surprisingly well the past four weeks. I've been amazed myself at the stamina, energy, hope and peace that God has graced me with day after day. Today, I fell apart. Here are the (mostly very trivial and insignificant) changes and adjustments that let to my breakdown today: The NICU is crowded, dark, and loud. Since we share a pod with 5 other babies somebody's monitors are constantly beeping. Some of the other babies in our pod could be held by their parents and it was hard to watch them getting to snuggle while I am still waiting for my chance to hold four-week old Clara. Some of those babies were crying today too and since Clara is ventilated, we haven't heard that sweet sound yet either. The attending doctor in the NICU had a very thick accent that made it hard for me to follow what she was saying (great doctor! But I was really struggling to listen to her). They couldn't find my breast milk I brought in a few days ago... I hate wasting that stuff! They wanted to give me tiny 2oz containers to put my milk in... I'm pumping between 35-40 ounces a day - I wanted my big containers from the PICU! I have to go to a separate room far away to pump; no more bedside pumping in a private room. They wouldn't let me bring my water into the unit. We have to take off rings and watches. No cell phones are allowed. There's less space overall, but that meant that a lot of the "stuff" (like Clara's books or blankets) I've gotten used to having around was in the way. I couldn't figure out how to make the new meal vouchers work. And I couldn't find my car in the parking deck. So all of that led to a pretty big meltdown by Clara's mama. I know that none of those things are important or matter in the grand scheme, but it's all about getting shoved out of your comfort zone and having to re-learn everything from the people to the space to the rules. I'll begin that process tomorrow after (hopefully) a good night's rest and a fresh start.
I share all of this in part just to let you know that I don't always have it all together. I don't want for you to have the impression that I'm sailing through this beautifully. Yes, I am coping well. That is due in large part to the incredible support system we have, to the time we had to prepare for this in advance, and to the many prayers that are being offered on our behalf right now. God has sheltered us and protected us and He will continue to do so. But today I broke and it was hard and I felt sad and overwhelmed by everything. I think that's pretty normal. I am accepting today for what it was and looking towards tomorrow for all the good it has the potential to be.
We're thankful for Clara's stability through this adjustment. We pray for her new doctors and staff and for a smooth medical transition where the correct information is all relayed and communicated effectively. We pray that she will continue to diurese well (yesterday she was negative 208cc for the day which meant she lost 0.4kg or roughly one pound!) and that we can focus soon on the other steps to treat her pulmonary hypertension and get her home (drug and vent weanings primarily). We pray for God to continue to sustain us as He has faithfully and for the strength to make it through the next phase of her recovery.
Here are some photos of the move. I took some video too, but it takes awhile to upload, so it may be in another post....
|Goodbye, sweet PICU room!|
A few closeups of our sweet girl today. She's still very swollen, but we hope to see improvement with that in the days ahead...
|Green for Go! Today was moving day!|
|You can see here that Clara's newborn hair is starting to all fall out. Any bets on how it comes back in? We think blond and curly.|
|A quick peek at her open eye...|
|Our new corner in the NICU|
|The long row of baby beds|
|Huge, huge baby. Let's watch her shrink!|
|Her NICU pod...|
For now, I'm easing my "too-many-tears-headache" with four advil, a glass of wine and a piece of chocolate chip pound cake. Sleep will come soon and the beautiful gift of a fresh new day tomorrow. Thanks for your continued prayers.
Oh Chrissy, I am crying with you! That would have been enough to put me over the edge too. I am still amazed by your courage and endurance in the storm. I hope you enjoyed that wine and pound cake! Still praying praying praying for sweet Clara and for God to continue the miracle He started in her.ReplyDelete
Let it be noted that Clara's grandmother does not have a good day when Clara's mother does not have a good day.ReplyDelete
Chrissy I have been riveted to your blog since Clara was born. I want to thank you for providing this window into one of God's miracles. For me this has been a revival. I am praying for your family- hold tight-your days of motherhood are just beginning and wonderful days are coming. Peace and rest to you and Robert. Rebecca MarionReplyDelete
When my daughter was switched to the new NICU, it did push every button in my soul.... Give it a few days (and cry every time you need to). Clara's accomplishments will make you smile when you feel it's too cramped or too loud. My prayers continue for strength for all of you! We love you too Clara!!ReplyDelete
Tracy & Ansley Hunter
I am praying for you all especially beautiful Clara! You are absolutely amazing to me and such an inspiration just to read this blog! Melissa BradyReplyDelete
It is totally ok for you to feel that way, you have been through so much, so many ups and downs, that you needed to be strong for. It makes sense that the more trivial things are what will break you. My prayers are still going strong! I am praying in this order... Health - Holding - Home. When that girl gets home she is going to get a big present from me in the mail!!!ReplyDelete
Aw, I'm sorry it was a hard day. I know you don't know me, but have to say something because though my three little ones were healthy babies, I really hate being in the hospital postpartum! Even without the immense stress you're under, all those crazy hormones make it so hard to deal with life and being around a bunch of people with no privacy to be overwhelmed or sad or whatever you're feeling really stinks!! Just walking in the hospital makes me feel like I'm going to have a mental breakdown even when there's nothing wrong. I do know that rest makes all the difference and I'm betting tomorrow will look so much better! Praying for you all!ReplyDelete
Chrissy, with all you have been through plus all the hormone changes, you were definitely due a breakdown. Bless you....we are praying for you all.ReplyDelete
Ladonna Shive Daughtry
I cried when I heard the pain in your post tonight. It was inevitable this time of breakdown would come. Breakdown whenever it's needed; a much needed outlet for you right now. Afterall, our emotions are a part of God's plans too! As I have from the day of Clara's birth, I will continue to pray for you , Robert and all grandparents. Clara has a tremendous troop of Believers, all sustained by His love and hope. Rest well this evening.....tomorrow is a new day!ReplyDelete
hope that the chocolate chip pound cake was really good chrissy! you deserve it :) love yall and continuing to pray..ReplyDelete
Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light. Matthew 12:28-30ReplyDelete
Chrissy, I have been there. When you have a child with health issues and have been through so much, many people comment, "I don't know how you do it." We know that we "do it" with the help of God. But that doesn't mean that we don't get overwhelmed and need to let it all out sometimes. He wants us to lay it all upon Him - the joys and the frustrations.
Enjoy your chocolate chip pound cake (YUM!) and your glass of wine, and rest easy. Tomorrow is a new day. Continued prayers for Clara Mae and your family as you soar over this next hurdle.
I agree with Ladonna, Chrissy. It's another miracle you haven't had one before now. No one can even come close to understanding what y'all have had to deal with. Just take comfort that everyone is still praying for all of you, including Mary Ann. You know now, that when your child hurts, you hurt, too. Praying that you all get a restful nights' sleep and tomorrow will be a better day. Love you all !! Diane SelfReplyDelete
You enjoy that chocolate pound cake and wine! As I read tonight, I couldn't help but shed a few tears. You are a strong mama, and are entitled to your moments! I am not a mother, and can't even come close to understand the heartache that you must feel. You are strong and you have us all praying for you, Robert, and sweet Clara! Stay strong, you and your family are in my thoughts and prayers! -KolleenReplyDelete
Girl,you deserved that Breakdown,that glass of Wine and that Chocolate!! You and Robert are heroes in my book!! God Bless You both and Clara!!ReplyDelete
Sounds like a very healthy and hopefully cathartic meltdown. Praying you sleep well this night and that even those other families in your room can be a joyous part of this journey.ReplyDelete
"Know therefore that the LORD your God is God; he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commandments." Deuteronomy 6:9
Love, Elizabeth Brill
I cried right with you Chrissy. Comfort in your surroundings and people are a huge thing right now. But can I also say how proud I am for you that you had a MUCH NEEDED breakdown. You will have many days ahead to regroup. Proud of your ibuprofen/wine coktail with your pound cake.ReplyDelete
I pray for you always. We love you all. We are all cheering for mommy, daddy and sweet Clara! I loved her open eyes! She is a blessing to us all.
We went from a private NICU with nurses we adored to a crowded, busy hospital that a friend described as a "futuristic baby farm." It was as jarring and upsetting as the experience you had today, and I remember crying my eyes out. It will get easier. You are doing such an amazing job. Truly, she couldn't wish for more of a supermom. The days that you break are tough, but they'll be behind you soon. From one NICU mom to another, you rock.ReplyDelete
You have been in crisis mode for too long and are entitled to a melt down. You have been a tremendous tower of strength and testimony to God's grace and love. Praying for Clara's continued recovery and for rest and refreshment for you. God's peace be with you.ReplyDelete
Remember that hug you got the other day? Sending another one your way. Ditto everyone else's comments that you are doing an amazing job handling everything. AMAZING. So don't beat yourself up over losing it today. Like you said, it was bound to happen. Those pesky hormones aren't working in your favor either! Know that we are here for you, praying for your strength, patience, and spirit, and as always for your sweet Clara Mae. xoxoReplyDelete
So sorry Chrissy, we're praying for you guys. I keep thinking of the verse someone else posted, Matt. 12:28-30. Also praying for the peace that transcends understanding. Let us know if we can help with anything.ReplyDelete
I can not begin to tell you how impressed I am with you and your family. It is so amazing to see how God is working and answering prayers in your life. I have been touched tremendously and have shared this blog with my Sunday School class who has in turn shared with others. You are touching more lives than you will ever know. Watching God work through you and Robert and Clara is breathtaking! I experience miracles with you every day! Thank you for sharing your human side. It is still difficult, even when we know that God is in control! I am sure I would be in more pieces than you! You are so deserving of the wonderful things that God is bringing to you! My personality type is an ESFP and the major part that is coming out during the reading of this blog is Feeling. I am feeling everything you go through with your incredible ability to describe all the details. I cry, rejoice, get frustrated, am humbled, and feel love with you! I am riding this roller coaster with you and God is the most AMAZING driver! Peace be with you all! My prayers are with you, Robert, and that sweet Baby Clara!ReplyDelete
-A friend of a friend.
Weeping may endure for a night, but joy comes in the morning.ReplyDelete
Hugs!!! The NICU is stressful for all involved. However, there are some great, great, great people in that NICU and you can tell them that Amy Long (a lowly although well liked there medical student) says you deserve the VIP treatment. People to keep an eye out for: Docs: Dr. Block, Dr. Welch, Dr. Furlong. Nurses: Mabel, Kathy, Sue-Ellen (she is one of the discharge nurses). Also from my memory its harder to have all your stuff but you can decorate her bed with pictures or such. She still can have her bows. As she gets better, off the vent and starts eating, they will eventually move her to intermediate care which are semi-private rooms with nice windows. This is just a phase. Clara has done so well, defied the odds. You have many prayers from Kenya.ReplyDelete
I am a friend of Carrie Soles. I just wanted to let you know my family and I are praying for sweet baby Clara!! I love reading everyday to see how she is improving! Thanks for keeping is posted.ReplyDelete
Oh sweet Chrissy! I'm praying for you. Thank you for sharing your heart today. I can't imagine the stress of all that change in one day. Absolutely can not fathom all that you have been through. I would have broken down with you...and probably not gotten up so quickly. I am so proud of you. God is your strength...it is clearly evident! I hope you slept well last night and that today you will see all the changes with fresh eyes and your strong will...ready to give it all to God moment by moment by moment.ReplyDelete
You are loved!
I have had those days myself in my life at different times and I feel the pain for you. Hopefully Thursday will be a better brighter day after a good cry and a good nights sleep. It used to help me so I hope it helps you. That is a hard adjustment you all have just been through. We will be praying for you and Clara and Robert.
Annette and Randy
I have been praying for Clara and you both since a friend at work told me about this several months ago. I start my days at work by reading your blog, being amazed at God's grace and the strength that He has given you to support Clara through these hard times. 18 years ago, my son was born early, had problems breathing and spent 4 weeks in NICU at Duke (it is a tough, loud, fast moving, never calm place). God has blessed my family and that same son will start school at UNCW in the fall, a healthy, happy and saved young man. God is good and will continue to help you through these times as long as you let Him. My prayers are with you daily and I look forward to the post and pictures of Clara at home. Thank you for blessing me (and the world) with your faith.ReplyDelete
Oh, I had those days, those breakdowns. And you know what is surprising, is that they don't come on the hardest days. The day Dakota got put on ECMO, the day they couldn't get the flow they had ordered through the ECMO machine, the day of surgery ... all those days I was solid as a rock. I only started to breakdown after Dakota was out of true danger and was starting to learn to eat. Let me tell you, the frustration of that will throw anybody over the edge. It's a normal response and we need to let out our feelings that we have been holding onto so tight for so many weeks. I think it is a great sign that Clara is getting farther on the road to recovery. Many prayers for good days and good progress (and some good cries inbetween!)!ReplyDelete
Mom to Dakota 12-25-2008
Been praying for you, Chrissy! Praying the Lord buoys you along with His grace and mercy through all of Clara's ups and downs! Yay, for so many good things, but we all have our bad days, don't feel bad. Love you and Robert(and of course Clara)!!ReplyDelete
Every new mom has a "breaking point" somewhere along the way. Congratulations! You are perfectly normal and I am sure you feel much better having released some of that pent-up emotion. Indeed, if you need to cry, get it out, take a cleansing breath and keep going! You have been excellent parents so far, giving that sweet baby to God, relinquishing control and allowing others to see to her needs. I am sure you have your "big girl panties" on today and are armed and fortified for what is to come! You are much loved and prayed for, I hope you feel it! Remember that God is already in the next moment and has everything under control!!ReplyDelete
Praying for you Chrissy as well as sweet Clara, Robert, family, doctors, nurses and entire staff! Hope today is much better for you. Also hope you enjoyed your treats when you got home and had a little relaxation!ReplyDelete
I had those days when I just wanted to sit and cry all day in the NICU, too. Now you get to start the journey toward HOME....it's so good to just hear the word home used in conjunction with YOUR baby, isn't it? prayers and love to you all!ReplyDelete
wine always did me good though, too ;-)
You are doing great! Allow yourself to fall apart sometimes, its okay, what you are going thru is extremely stressful. You are doing amazing, I know the change is hard but hang in there, its one step closer to home, where you will have her all to yourselves. I continue to pray for you all, that god will wrap his arms around you and carry you thru this transition.ReplyDelete
- CDH Mom of Eli, Yvonne
Nothing relieves stress like a good cry! Afterwards you always feel vented. Lots of stress for you all yesterday, but one way to look at it is that Clara is making a move to the more "normal" level of just the NICU instead of the ECMO single room. This is progress, although stressful to all of you, like you said, Clara won't know the difference. I am glad you feel good about the staff. They are the most important to her recovery, wherever you are placed. Praying for you all!ReplyDelete
You are doing great, Chrissy! It is very obvious that you are a strong Christian and a wonderful mom. Everyone needs to let go of those emotions from time to time, and you deserve to do so, too! Your blog is inspirational -- one day when Clara is home and healthy, you should think of publishing!ReplyDelete
My mother-in-law is friends with your friends mother-in-law... and she's told me about Sweet Clara. We've been lifting her up in prayer daily, and you too. Love how the family of God can be connected.ReplyDelete
May God give strength again today!
Heather, Costa Mesa, CA
Yesterday became TODAY and I hope it has been a better one for all of you. Never feel ashamed of tears ... GOD gives them to us for when we need them. You have held up so well, better than most could have. Cry your tears, sweet Chrissy, for soon your JOY will be overflowing. Sharing your feelings is so important. I am so glad that you feel confident enough to do that..... and we are all too glad to hold you up and see you through. That goes for Robert, too!!! Love you guys.ReplyDelete
Chrissy- It's OK to be human, especially when circumstances have demanded you be superhuman for a while. God will provide renewed strength, no doubt. I see a row of babies and parents as another way for Clara to touch those that maybe need to know that God is in their corner too. I know that she won't disappoint. Looking forward to each new step towards home and the continued Lasix weight loss plan! Karla FrazierReplyDelete
Shes amazing and so is her family. It is not easy for anyone to experience what you guys are going through. We continue to pray for you and I LOVE how far she has come so far. SHE IS A MIRACLE. I am just now catching up on your blog posts. YAY CLARA!!!! Love, Hugs and many many prayers continuing to come your way from our family.ReplyDelete
Mom of Kiernan CDH Survivor