Nov
15

LJ – Day 7

Hey Everyone,

I know I haven’t been great at updating the blog everyday, but no news is good news right? LJ has just been slowly coming down on her gas levels (Oxygen, etc) and sedation/pain meds. Shes actually being a little sluggish still from the sedation and so they are trying to get her moving a bit more. She did get turned on her belly for the first time yesterday, which she really likes (see pic above). They are just slowly progressing her to get her weened off the gases. The hope is maybe tomorrow (Wednesday) they can start getting her off her ventilator tube. Then by the end of the week she might be getting fed via Katie and bottle.

Katie is recouping well, but still taking it easy. They said she would need 6 weeks to fully recover. She has also had to be up every 3 hours to pump so we can store up a supply of milk for LJ when she is ready to eat. I’ve been making 4 trips a day to see LJ, all before each nurse change so I can see how she is doing via each nurse. My first visit is at 6:30am every morning, 2nd late morning, 3rd late afternoon, then last one around 8:30pm. Katie comes with me about 2 times a day if she is feeling up for it. She is trying to balance sleep, recouping, and coming to see her baby. It’s a hard balance, but she is doing a great job managing it.

Katie’s mom returned home Sunday and my mom and grandma came yesterday and will be here until Saturday morning. Then we will have my Dad, Stepmom, and little sister here to see her during Thanksgiving. It’s nice to show her off to family. πŸ™‚ Katie’s mom was a HUGE help for us during the delivery and after. It’s great to have family here to help us with our crazy schedules.

Thank you all for your continued prayers. I’ll probably be adding a pretty exciting post later today, so check back for that. πŸ™‚

Love,

Ben, Katie, & LJ

 

 

Nov
11

LJ – Day 3

Hey Everyone!

I am sorry I am just now updating from yesterday after LJ’s surgery. Katie was discharged from the hospital during LJ’s surgery, so after we saw her we went straight home so Katie could rest. I have been very exhausted myself since I have been going to see LJ a lot to check up and talk to the nurses since Katie can’t.

We just got back from seeing her about an hour ago (Friday, 11:00am EST) and got to talk with Dr. Kays the CDH Specialist. Usually in the first 48 hours after surgery they don’t change the gas levels of the babies, but because LJ is doing SO well they have already started to come down! She is now at 40% Oxygen and her breaths per minute they are helping her with went from 30 during her surgery to 24 shortly after surgery.

We also got to look at all the X-rays from right after she was born until this morning. The changes are amazing! Before they couldn’t tell how much lung she had until she had her surgery. Not she has a full lung on her right side and a 70-75% lung on her left side, which is her defected side. Her heart is starting to shift over to the center of her chest and is looking great! Dr. Kays said a normal baby is actually born with more lung than they need, so her having 70% in one and a full in the other is doing great. Here 70% lung will continue to grow over the next week or so filling up the space it has to make it full. What I gathered is that it will always be a tad smaller than the right one, but nothing that is noticeable or really matters.

Dr. Kays thinks she will be off Oxygen on Tuesday or Wednesday most likely! At that point Katie (and me) will be able to hold her for the first time. Then by the end of the week she will be starting to feed, which Katie will get to do. Dr. Kays says she is going to live a perfectly normal life and get to do anything she wants, even run a marathon. He said she won’t WIN the marathon, but neither will he, me, or Katie. Haha! All she will have to show for this time in her life is a scar on her chest. I put a picture at the top of this post for those that want to see her awesome gash, just click to make it bigger. Those that don’t like that stuff (I use to be one of those people until all this hospital stuff), don’t click it. πŸ™‚

We are in constant thanks to God for His amazing grace and perfect will in allowing LJ to be normal and make it through this. He is the reason she is doing so well. I believe He has listened to every single one of your prayers for her over the past 2 months. We would have never thought LJ would have come out so strong and great as she has. We can’t wait for every single one of you to meet her, and I know if she could talk she would be so thankful for each and everyone of you who have prayed your hearts out for her. Katie and I can not thank you enough as well.

We will continue to celebrate with you LJ’s progress until she goes home, which I am guessing might be alittle after Thanksgiving. We love you all and let us remember to give Him all the Glory.

Love,

Ben, Katie, & LJ

Nov
10

LJ – Out of Surgery

LJ is out of surgery. They were SO PLEASE with how she was and how it went!!!! THIS IS GREAT NEWS!!! The best news we have had!!! She had 80% of her diaphragm, which is a lot! She also had about 70% of her lung in the left side (CDH side), which is also GREAT! They didn’t have to patch the diaphragm, just stitch it! They did the surgery faster than anticipated. They say she will probably get to go home faster than most CDH babies! I am tearing up as I write this! GOD IS GOOD! Thank you thank you thank you for all the prayers. We will continue to keep you posted as we know more, and hopefully get some after surgery pics up of her.

Lots of Love,

Ben, Katie, & LJ

 

Nov
10

LJ – Now in Surgery

So we got to walk down with LJ’s transport in the elevator to the OR. She was sleeping the whole way. We will keep you posted as we hear how she does after surgery. God is good!

Nov
10

LJ – Day 2.75

Hey Everyone,

We had kind of a crazy night last night, but nothing to do with LJ. They ended up having a big surge of women in Labor and Delivery and so Katie got a roommate at midnight last night. I had to pack all my stuff up and go stay at our apartment. We were pretty frustrated because we were told our room was a private room. Regardless, it was ok, KatieΒ  just didn’t get much sleep because of all the noise.

I checked on LJ this morning around 6:30am and talked to her night nurse, Laura. Laura said LJ did great all night, she just slept like a baby. πŸ™‚ She also said her gases (where they check how well she is doing with Oxygen, etc.) are wonderful. This is great news going into her surgery this morning! Last night they actually turned her oxygen down again to 50%, which is great!

Thanks for your prayers today as she goes into surgery at 8am. We will keep you posted as we know more.

Love,

Ben, Katie, & LJ

Nov
09

LJ – Day 2

Hey Everyone,

As of right now LJ is still doing well. No changes in the negative direction. They have actually gone down on her oxygen level a bit, which is a good thing! Her surgery is scheduled for 8:00am tomorrow (Thursday). Please pray for this time. The total surgery and all will take around 2.5 hours. We will keep you posted as we know things tomorrow.

Some exciting things happened as well this evening. Katie got change LJ’s diaper! She also got to hold her while they changed her bed. She was just holding her out and up, but holding her nonetheless! She never left her bed more than 6 or 8 inches. This was WAY cool for Mom though. πŸ™‚

Katie is still recovering, but doing well. They haven’t discharged us from the hospital yet, but we think she probably will tomorrow.

Thanks for your continued prayers. We pray for the doctors hands tomorrow, and LJ to do well with the fixing of her CDH.

Love,

Ben, Katie, & LJ

Nov
09

LJ – Day 1.5

Good Morning! I went to check on LJ this morning before her nurse shift change and our wonderful nurse Lindsey said she had a great night! This is a good thing! Hopefully this will help with her going into the hard Day 2. We ask for continued prayers for LJ for Day 2 that she pushes through strong. As of right now her surgery is scheduled for tomorrow (Thursday).

Thanks again for all the prayers so far. God is gracious!

Love,

Ben, Katie, & LJ

Nov
08

LJ – Day 1

Hey Everyone,

It has been a heck of a day and we thank all of you for journeying with us today. We know we posted alot about LJ’s arrival, as it was very exciting to have her out in the world. The most emotional part for Katie and me was when LJ came out and cried. That cry was something we didn’t know if we would be able to hear or not, so when we did it brought tears streaming down our face. It was a wonderful moment shared by Mommy and Daddy.

Since then LJ has been getting the most AMAZING care by Dr. Kays and his team. They let me go back to see LJ in the NICU immediately after she was born to take pictures (the ones you saw in the previous post). They did Xrays and a bunch of test, and as far as they can see nothing has been unexpected with her. This is a good thing.

After delivery at 11:42am, we didn’t get to see LJ until about 6:00pm. Katie and I got to see her and touch her together for the first time. They said she is doing very well for a Day 1 of a CDH baby. We know this process will be a day by day journey. Tomorrow, Day 2, will be her worst day most likely. It will tell us a lot about how well she will probably do. If all goes well, they plan to do her surgery to fix her hernia on Thursday.

After dinner Katie and I went back to see her again and hung out for a bit. She was getting checked by the nurse, getting her tubes changed, etc. The nurse said she was still doing well. We are now settling into our room #2, which hopefully we can get some rest from a long 36 hours. Katie is recovering well, as many of you have asked about.

We wanted to ask for your prayers each day as LJ goes through this journey. Please pray for tomorrow (Day 2) to be a good one since it is suppose to be the worst day. Pray she fights well and pushes through. We will then tackle the next day.

Thanks again for your overflowing love and support today. It was so comforting. Until tomorrow…signing off.

Love,

Ben, Katie, & LJ

 

Nov
08

LJ’s First Moments into the World

Nov
08

LJ Update from the NICU

According to the NICU, LJ has had a REALLY good start for a CDH baby. Obviously things can change over the next several days, but as of now she is breathing through a ventilator, which is a good thing. I got to go see LJ in the NICU before they wrapped her and those are the pics you see below. The first one is minutes after being born. She was alert enough in the NICU to look at me and pose for a picture. πŸ™‚

As we know more through this week we will definitely keep you posted. She still has a long road ahead, but we are excited to see her. We appreciate your continued prayers.

Love,

Ben, Katie, & NEW BABY LJ

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