Day 26-29

29 days.

To me there is not much more than to say my miracle is home! She is healthy! She cries- a lot! And super loud!

Lucie made her great escape this morning at 10:30. Her first stop was Fetal Care Institute to show everyone that she was absolutely amazing and going home pretty quick.

First thing we did when we got home was change a poppy diaper and eat. Then we had a photo session. Shocker, mommy had a photo session of Lucie.

Lucie’s journey with CDH is not over, but I will have a lot less to say. I will update about Lucie’s development, but not nearly as often.

Thank you for your prayers and support. Now the real adventure begins (and sleepless nights).

Day 23-25

My have we come so far since July 1. Lucie is completely off respiratory support and doing fabulous. I remember fearing if my baby would make it or not and now I have this amazing, strong daughter who is my hero. She went from being on a major amount of respiratory support to none in three short weeks.

She is a great little breast feeder. She is exclusively breast feeding now and doing great. She is so funny because she roots everything regardless if she is hungry or not.

Our biggest and hopefully last hurdle is getting completely off the morphine. She is on a very small dose, but she still gets it twice a day. This is where I’m asking for prayers yet again. We just want to go home as a family of three ( and a dog).

As I write, my hero is lying on my lap. Not everyone gets to meet their hero, but my hero calls me mom (ok someday will call me mom). We are beyond blessed. My cherub truly earned her wings.

Thankfulness

I feel that my last post may have come of less positive than I meant. I have not lost hope. I am more hopeful each day because I know we are on the home stretch of this journey. I feel stressed when I go home because I know that we will be living a great life at home very soon and I just want to fast forward to it. My Lucie is amazing and I thank God for her over and over. I have been following quite a few NICU babies’ stories in Facebook. Several of them have CDH and I can’t not get over how we avoided some seriously bad situations. I know they thought she would be on ecmo that second day, but she proved them wrong. This weekend I think the nurses finally felt they could tell me how bad Lucie looked that first day/night. As I read theses stories I can’t believe God gave us such a big break. I pray for there babies and don’t understand why they need to suffer. I am do thankful for everyone of you and your prayers. I joke on a regular basis with Ryan telling home I think the whole town of Trenton is praying for Lucie. And you know, I’m not that far off. We had a great friend organize a fundraiser for us and today a man donated to Lucie and said that was his wife’s birthday present. I saw another person shared Lucie’s fundraiser on her Facebook page. God gives us every gift we need and I am overwhelmed with the graciousness of everyone.

Day 20-22

What a whirlwind the past few days. Last Friday Lucie graduated from the ventilator to a high flow nose cannula and has only been on room air. Yesterday she graduated to a low flow nose cannula only on room air. Next step will be to wean her from 1 liter to a half liter and so on. She also went from morphine twice a day to once a day. She was not ready for that and was getting very upset and was showing signs of withdraw. She has been put back on morphing twice a day. She also was upgraded to a crib.

On Saturday she started pedialyte feedings. She received 15 mls every three hours. On Sunday she began real feedings with 15 mls of breast milk every three hours. She seems to have a little reflux which gets a lot worse when she upset. At this point the question is does she have reflux because she is a CDH baby or because she is having withdraw symptoms.

We even tried breast feeding for the first time. It went ok. She latched, but she was so upset she couldn’t keep herself latched. Daddy supplemented with a bottle after I fed her and she threw up all over him.

We’re getting there. Poor Lucie needs to get over her withdraw symptoms from the fentanyl. I feel like that may be our biggest set back and keep us here longer. I see the light at the end of the tunnel and it keeps getting closer. I just want to get her home and have a “normal” day. I want to come home and not feel stressed because the grass is not cut or we have no food in our house. Not that it really matters if we have food or not since we eat our meals at the hospital. I’m just ready for normal. My Lucie deserves normal.

Day 17-19

Life in the NICU keeps getting better. Two days ago Lucie wore clothes for the first time and did skin to skin with me for the first time. Later that day, Ryan held her for the first time.

Today Lucie is officially breathing on her own. She had her breathing tube removed today and she was put on a nasal cannula. Once her tube was removed I was able to hear her hoarse little cry. We also did skin to skin and cuddle time today. She is a binky baby! She likes her binky and classical music playing.

Today is such a good day and I am so thankful for everything. God keeps answering all of our prayers.

Day 13-16

We’ve had a couple days post-op to recover. Lucie really took everything like a champ. Over the weekend she had both belly button lines taken out. Yesterday she had a huge day…she had her catheter removed, her chest tube removed, and she was taken off her fentanyl. She was so cranky yesterday morning, but as the day progressed she did much better.

She is slowly being weaned off her ventilator. This takes a couples days to do and all depends on her. She is at a really low rate and a low oxygen level. Hoping that she continues to tolerate it and can continue to be weaned.

No updates for this morning yet. I’m waiting on rounds to know her next step. I’m hoping she can start receiving breast milk today or tomorrow. She is having bowel movements and that is the determining factor.

One step closer.

Day 9-12

I haven’t updated in a couple days and I apologize. Lucie wasn’t changing much since surgery was scheduled for Thursday. No one wanted to rock the boat and delay surgery. She had surgery Thursday, July 11. She did amazing!

They took her at 7:30 am. Watching the team take her was the hardest thing Ryan and I ever did. Our 10 day old baby girl was facing major surgery. She was going to have her chest cut open and organs pushed back to where they belong. It was terrifying. Her OR nurse, Heather Garber, told us she would call with updates once an hour. We were blessed to have Judy from pastoral care pray with us and comfort us as the team took Lucie away.

Around 8:30 Heather called to tell us they had started the procedure. From this point we knew we had about 3-3.5 hours of surgery time facing us. Our families and us went to breakfast and spent some time in the cafeteria. Before we headed back to the NICU, we also went to the chapel.

Around 12:30 we spoke with the surgeon Dr. Chatoorgoon. He told us that the hole had been bigger than they had expected. He ended up fixing it with a mesh.

Last night Lucie had some issues with pain. They had to give her additional dosages of fentanyl. This morning, though, she was doing much better.

It was a rough night on me. She was waking up and I could see the pain in her eyes. I just wanted to take it away and feel the pain for her. My Wonder Woman has so much fight in her. So proud of her.

Today they took her off the nitric oxide. One step closer to our baby coming home.

Day 7 & 8

My Lucie is a week old today. She looks like a completely different kid too. I see a little Ryan when I look at her now. She is very active and bright eyed. It is amazing to watch her and see her change before my eyes.

We have had two more good days. She was switched from the oscillator to the conventional ventilator today. Her first blood gas after it was very comparable to the last blood gas on the oscillator. These are all great strides towards surgery.

Surgery is tentatively scheduled for Thursday morning. Hopefully after her echo tomorrow things will look good enough for her to have it. My little miracle baby is proving her strength everyday and keeps putting up the good fight.

As always, thank you for the prayers. We couldn’t do this without your prayers and support.

Day 5 & 6

I know the day is not over, but I am so filled with joy right now it is hard not to update.

Yesterday they took Lucie off sedation hoping that if she moves that her swelling will start going down more. She has lost a couple ounces which means at least some fluid is coming off. Her X-ray showed that there was still fluid in her chest and echocardiogram showed she still had severe pulmonary hypertension. Because she has severe pulmonary hypertension she will not have surgery Monday. She needs time to heal before it is safe to have surgery.

During the night she had great gasses. Her CO2 was in the 40s and her PA O2 was over 100. I joked with Ryan that he had a crush on her nurse Eric so she thought she better be good for him.

This morning was the most amazing experience. She had eyes barely open when we got here. I put my finger next to her hand and she gripped my finger. She was gripping on real right right and wasn’t letting go.

I couldn’t be a happier momma. I feel a hundred times better and can’t stop tearing up when she looks at me or holds my finger. I love watching her little legs kick and her eyes follow a noise or her bonding baby Ethel when we move it slightly.

I am scared to get too excited because I know it’s not any where close to over. Really, we haven’t begun yet. Her surgery is a big scary step that we still need to make. I hope we can make it soon, but if she’s not ready, I’m not ready. I pray that her pulmonary hypertension gets better so we can have surgery and start on our way home.

Lucie makes me so proud to be a momma. All I want to do is pick her up and cuddle her close to me. The day I get to hold her will be the most amazing experience in the world.

Day 3 and Day 4- Happy Fourth of July!

Well we have been here four days now. Can you believe Lucie is 3 days old already? I have to say I fall in love more and more everyday.

We had some ups and downs as usual. Wednesday she was doing awesome with her stats and Dr. Booth was very pleased. He decided to take her off the oscillator and put her back on the conventional ventilator. I watched this entire process and was fascinated with how quickly they could do it and how it was like clockwork for them. Absolutely amazes me.

We stuck around until after her 5:00 blood gas to see how she was doing with her new (old) ventilator. She wasn’t doing as well as we wanted. Most of her stats were fine (oxygen levels, PA O2, blood pressure), but she was not releasing the CO2 in her blood. Dr. Booth mentioned that part of it could be because she was so sedated, but he wanted to give it a little more time.

When we left her, I was able to kiss her for the first time. I loved kissing her! Daddy and I told her we didn’t want any calls tonight because that meant something wasn’t going well.

Unfortunately that night we did get a call. She was going back on the oscillator. Her CO2 levels were not getting better. Ryan and I thought it was a good idea for her to be back on the oscillator since she was doing do much better on it.

When we called in the middle of the night, her CO2 level had dropped from an 80 to a 60- which was a step in the right direction. The next morning thought it had gone up to a 68. Since then she seems to have straightened up her act with getting the CO2 out.

Today she had a lower blood pressure in the morning? But since then it has been in the 50’s which is where we want it.

She is less sedated than before so she is moving some. Whenever I put my hand on her foot she pushes on it and wraps her toes. It’s the closest thing I’m getting to snuggling her. But the negative to her being less sedated is that whenever they suction her or move her head her blood pressure or oxygen levels drop. She recovers within a half hour which is good.

So that’s our story for now. Ryan and I are about to go home and rest up a little. She’s in great hands here, and that is the only thing that makes leaving her a little (and only a wee but) easier.

Happy Fourth of July everyone from the Hendersons!