Nov
23

LJ – No Tubes & NICU 2

Hey Everyone,

Earlier today they took out LJ’s last tube, her feeding tube. She now is tube FREE! She also got moved from the NICU 3 to the NICU 2 tonight, which is the step down unit. We were hoping to stay at the NICU 3 until going home, but they had to make room for more sick babies. The NICU 2 is more noisy and way more crowded. It is a bit overwhelming for us tonight since we have been in the NICU 3 for so long and felt comfortable there. We know this is just a step closer to going home though. We will just have to push through this last time here. It will make for some hard long days until LJ goes home, but we can manage it. It’s just hard since we are here all day long with LJ.

As we said earlier, LJ is doing great! We are just waiting for them to give us a discharge day any day now. Hopefully we will know more tomorrow. If you could pray for Katie and me to have patience as we finish up our time in the NICU 2 since we are a bit overwhelmed by the change.

Lots of love from Gainesville,

Ben, Katie, & LJ

Nov
23

LJ – Day 15

So last night at 8:30pm they removed LJ’s nasal cannula, meaning that she has zero oxygen help now. She also ate from a bottle last night in the middle of the night during all three feeds. This is her first night not getting tube fed. They said she ate great via the bottle with no problems. At this point there isn’t much more she needs, we will just have to wait and see what they say about discharging her and when that will be. My hope is this weekend, which would be great. The earliest we would head back to Texas would be next Thursday though, due to having to get our Tahoe outfitted with a trailer hitch to go back with everything. If all goes well we could be home probably Saturday or Sunday of Dec. 3rd or 4th. We will know more as the week goes on.

Granddad, Grandma Susan, and Aunt Gabi will be here today to spend Thanksgiving with us and the weekend. We hope all of you have safe travels and have a Happy Thanksgiving! Thanks again for all your support and prayers.

P.S. – The stuff on her face is tape for her feeding tube. Kinda looks like dried milk or something…haha!

Love,

Ben, Katie, & LJ

Nov
22

LJ – Day 14 (Exciting News!)

Hey Everyone!

So LJ fed all day yesterday pretty well, enough that she didn’t have to be supplemented through her feeding tube, except at night when we are not here so she can sleep. We met briefly with Dr. Kays this morning and he said that he thinks she could probably be discharged from the hospital sometime early next week! That means we could be home earlier than we thought! This is exciting news! We pray that LJ continues to eat well this week so she can be ready to leave with no problems.

After we get discharged we will stay with LJ in our apartment here in Gainesville for a couple of days just to make sure everything goes well while being out of the hospital. Then we will pack up the car and the UHaul trailer and take a couple of days to drive back to Dallas. When all this happens is tentative, but sounds like early next week is a good probability.

It is so amazing to think that just 2 weeks ago today our little LJ was born with CDH, and now we are talking about going home plans. God is amazing! We will keep you posted as we know more. Thank you for trekking with us on this journey. We can’t wait to share the stories God has done and is doing through this time in our lives. We hope our story has maybe helped change you as well.

Lots of Love from Gainesville,

Ben, Katie, & LJ

 

 

Nov
21

LJ – Day 13

Well it’s Monday, a start of a new week. Feeding for LJ was slow but progressive yesterday. Today she had a GREAT first feed and we have a lactation specialist helping this morning, which we didn’t have over the weekend. Thanks for your prayers for her feeding. Hopefully she will continue today to do well and progress. We will be up at the hospital all day again today.

Even though her feeding is going slow, it is so crazy to think that less than 2 weeks ago our little LJ was born with CDH. Since then she has had major surgery, been weaned from a ventilator, and now she is breathing on her own totally fine and is starting to eat on her own. Who would have thought we would be where we are with her this early! God is amazing.

PS – LJ and Daddy have the same hairstyle today. Just sayin… 🙂

Love,

Ben, Katie, & LJ

Nov
20

LJ – Day 12 (Feeding Challenge)

Hey Everyone,

Well, we are working on feeding these days. It has been a rough start, but we are making progress, even though it is slow progress. LJ is just trying to get use to learning to feed, when to sleep, and when to eat. Katie and I get to the hospital at about 7:45am and stay until about 9:00pm. It’s making for long days, but we are trying to help LJ get this feeding thing down. We are going to try and run out between feedings for lunch and dinner if we can just to get a break, but it is hard to leave our baby for very long.

If you all could pray for LJ to get the feeding and learn to eat on her own that would be awesome. She attempts to feed by Katie or bottle every 3 hours and whatever she doesn’t finish she gets through a feeding tube they have through her nose to her stomach.

That’s the latest as of now. Thanks for all your prayers and support.

Love,

Ben, Katie, & LJ

Nov
18

LJ – Day 10 (Feeding!)


Hey Everyone,

LJ only had to stay on CPAP for about 18 hrs. Now she is just on a normal nasal cannula, which just breaths in oxygen when she breaths. She also got her feeding tube out and had a bottle for the first time this morning! She’s also been sucking on her pacifier a lot, which is great. She is pretty excited to be out of all those tubes and restraints. It is so awesome to see our little girls beautiful face without as many tubes and stuff. She seems to really like listening to the song “How He Loves” by John Mark McMillan. It seems to calm her down. 🙂

She will probably get to be fed by Katie with a bottle later today. Thanks again for all your prayers! We are just THAT much closer to getting to go home with our miracle baby.

Love,

Ben, Katie, & LJ

Nov
17

LJ – Breathing On Her Own!

Well, they just removed LJ’s ventilator tube. She is now breathing totally on her own! As you can see in the picture she is on what they call CPAP. It is pushing oxygen through her nose in to make sure she does well with breathing on her own. The HOPE is that she only has to be on it for 24 hours. All babies HATE the CPAP. It’s not a fun thing. It’s kind of hard to see her not liking it, but it is a GREAT step to get her 100%. She also has a small tube through her mouth to her stomach for feeding that they will start in about an hour or so. She is currently being comforted by Katie’s hands. We will probably be here for a while until she gets a little more calmed down.

Continue to pray for her as she pushing through this CPAP time.

Love,

Ben, Katie, and “Breathing on her own” LJ

Nov
17

LJ – Day 9

Hey Everyone,

On my morning visit to see LJ this morning at 6:30am I got there right when they had finished checking her gases. Her gases went down (which is good!). They dropped one of her levels, which is just that much closer to getting off the ventilator. I didn’t see the X-ray this morning to see how the fluid is doing in her lungs, but based on her gases and based on her activity I am thinking they are getting better. If she continues to have a good progressive day today she could possibly get off the ventilator today or tomorrow depending on what Dr. Kays thinks.

As far as how she is acting she is acting great this morning. She had her eyes open the whole time and was sucking on the ventilator tube in her mouth. She looked very content. Her swelling has also gone down a lot from all the meds she has been on.

Thanks as always for your prayers. I will continue to blog regularly to keep you up to date with her progress since she is changing more and more throughout the day.

Love,

Ben, Katie, & LJ

Nov
16

LJ – Day 8

Hey Everyone,

Here is an update on LJ and a couple of prayer requests we are asking from you. First off, LJ has been in the same place for a couple of days as far as progression. Nothing to be alarmed by, but she still has a lot of fluid in her lungs that needs to make it’s way out in order to get her gas levels down enough to take her off the ventilator. Originally they thought that would be today, but now it looks like it will be a few more days or so depending on her activity and the fluid. If you could pray that the fluid would start to go away and her gas levels would be better so she can get off the ventilator. Again, she hasn’t made any backwards progress, just her forward progress is going a tad bit slower than they had estimated.

My second prayer request has nothing to do with LJ. It actually has to do with another baby that has CDH in the NICU at Shands. We met the parents in the lobby this past weekend when their baby, Kobe, was in surgery. Kobe was born in Tallahassee where they live and was air flighted to Shands because of having an unknown CDH. The mom’s name is Jessica and the Dad’s name is Kenny. Kobe was on ECHMO right before he had surgery. He has a few different issues than LJ does. We are asking that you would pray for little Kobe, Mom (Jessica) and Dad (Kenny). As I mentioned, they live in Tallahassee and have to travel on the weekends to see Kobe because of other children and some other reasons I won’t mention on here. I know every single one of you have been such amazing prayer warriors for LJ and we would love to ask that you pray just as hard for this family. God is good. God is gracious. God is love.

Love,

Ben, Katie, & LJ

Nov
15

LJ’s Story

 

Hey Everyone,

Before LJ was born our prayer was that LJ’s story would be used to change lives, whether God allowed her to live or not. Well, it seems God is allowing both to already happen. This past Sunday my mentor, Justin Grunewald, preached a message at Buckhead Church in Atlanta and told LJ’s story. Buckhead Church has around 7000-8000 attenders every Sunday. Justin delivered an incredible message, and our prayer is that his message would impact and changes so many lives. We are so excited that LJ’s story is already being used for God’s Glory. I hope you all take some time to watch this great message even if you aren’t a church person.

The message is available to watch on Buckhead Church’s website under “The Immeasurable LIFE”. Make sure to click on PART 2, Justin Grunewald once you get to the page, otherwise you will watch Part 1, which is not the correct message. Justin has a South African accent, so you know you have the right message. Here is the link http://www.buckheadchurch.org/messages/the-immeasurable-life

 

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