2 months

Lucie is growing like crazy. At her two month check up she weighed 8 pounds 10 ounces! She has been cooing a lot which is so much fun. She will also hold her rattle if you put it in her hand.

I am so busy with her I forget to update regularly. She is just growing up too fast. Today at Ryan’s mom’s house she rolled over for the first time. She’s only been home for five weeks and she’s rolling over???? Sometimes I forget that she is 2 months old.

Her baptism is next week and I am so excited for it. She will be wearing the same dress that my sister and I wore for our baptisms. It’s not a traditional christening gown, but it means so much to me she can wear it.

Surgery follow up

Ryan took Lucie for her surgery follow up today. She has passed her birth weight! Everything looks good and she doesn’t go back until February. So blessed!

I went back to work last week and Lucie spends two days a week at Ryan’s mom’s house and three days at her neighbors. She is doing awesome at both places. I am so happy with how she is doing.

2 weeks home

We have been home for two weeks and it is going really well. She sleeps for good chunks at night, if she spends part of the night in her bouncer. She has been nursing really well with very little spit up. I notice she does gag occasionally from her reflux, but not horrible.

The big news is that I am employed again. On the 19th I will back at work part time as a teacher’s aide at St. Cletus. Lucie will be spending time with Nana and Nana’s neighbor Jenny. I am excited but very nervous as well. Can’t believe I will have to leave her for part of the day so soon.

She has her first surgery follow up on the 27th. My mom and Ryan are taking her.

The other day I was driving 70 and noticed a Cardinal Glennon billboard. It had her surgeon on it! Loved Dr. Chatoorgoon!

Home

We have been home since Monday and we are adjusting pretty smoothly. Lucie and Emmy have bonded- Emmy licks Lucie’s feet and Lucie doesn’t get upset. Emmy is also getting protective of Lucie and barks at anyone coming around her.

Today is the first day that I don’t have help. My mom and sister have rotated visiting and helping. My mother-in-law came Wednesday night while Ryan was at bowling.

I am so thankful Lucie is at home and HEALTHY. We snuggle a lot because I missed out on that time while she was in the hospital. If you look at her or hear her, you would have no idea the life threatening ordeal she went though. My Lucie is a fighter! My Lucie just showed everyone how a very sick baby with only a 50/50 chance of making it can kick CDH booty in 29 short days.

Fight like a cherub.

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.