The Final Cardiology Visit

Went to Lana's cardiologist today and it went like this...

Dr.Burkholder: I got some bad news
Me: (blank look on my face but my heart is sinking)
Dr.Burkholder: I'll never get to see you guys ever again... (sad look on his face)
Me: (I look at the floor just to make sure I didn't pee in my pants)

After taking her EKG and ECHO he says there is no reason to keep seeing him. It's as if nothing ever happened. 

During this visit, the cardiologist also had a resident present with him. He explained to him that Lana was the sickest baby he has ever had to take care of in his career. He proceeded to mention that there was a point where Lana was so sick and her pulmonary hypertension so high that her ventricle would barely quiver instead of closing completely to pump blood. He finally disclosed to us that she had a 90% mortality rate and he was in the process of recommending palliative care. This was the point where the goosebumps came and shivers went down my spine. 

She fought her way out of that hole and there are no traces of any damage to her heart. God is good. 

Side note: Apparently she broke the record in his office for having the most ECHOs taken. 

Taken after she was finally done crying from getting her EKG and ECHO completed.

Here are the two munchkins playing with each other. Lana has always been enthralled by her older sister, and this just another example. Will update on this post later. Gonna try to catch up on some ZzZzZz...

Just a Quick Update

It took a while to get the results of Lana's sleep study back, but after the long wait we learned that Lana may not quite be ready to wean down her Oxygen. It's a little disappointing because we were really hoping she wouldn't be tethered to her oxygen concentrator for much longer. But just like in the NICU, she'll be ready when she's ready. The important thing is that she is safe and that she is working towards getting stronger. I'm confident that as she gains weight and grows, she will be doing more than just cheering on her sister. =)

We're keeping it high tech in the household. We tried 4 different swings to get Lana to calm down (we think she's teething), and ultimately this is what works. 

We don't have our appointment with our pulmonologist until next week, but we're hoping that her sleep study went well. Today was actually her pediatric appointment and he seemed satisfied with her progress. Lana is learning to roll from side to side, and we're hoping that she will continue to catch up in regards to her motor skills. Also, she had two booster shots and was very grumpy at first, but then she just slept it off. 

Sleep Study

Lana went in for a sleep study last night. They wanted to see how she is breathing when she is sleeping, and they also check for brain activity.

Lana was actually fine when they were attaching the leads on her. But when they put on the hat to keep it in place, she wasn't a happy camper. When she finally settled down, this was how she looked like.

She actually slept pretty soundly, but we'll have to wait for the results to come back. 

As far as weight gain is concerned, we think we've finally found something that works. She did lose some weight since her discharge but is starting to feed better now. We hope that she will start to trend upwards soon.

1 Month After Discharge

Sorry for the lack of updates. Admittedly, I have grossly underestimated how much time we would actually have once we got home. For the meantime, we are making sure there are eyes on her 24/7. This means that I take the late shift and stay up until 4:00 am in the morning, until Kelly wakes up. She then takes over until it's the nanny's turn. Rinse and repeat. This is also further complicated by the fact that I've had to work longer hours due to software rollout which affects our whole hospital. With that said, I think we're doing ok.

Her viagra is now down to once daily, as opposed to four times per day. In about two weeks, she should be off it. Her breathing is still in issue, but we know that this would be a long term thing, so we'll just be patient. She has been pulling her cannula off but she doesn't desaturate as quickly and as bad, so that we would like to think that her lungs are getting stronger. Once she starts to gain more weight, she should theoretically grow new lung tissues also. 

Speaking of weight gain, that's our main focus at the moment. It's sort of a catch-22, because in order to grow new lung tissues she needs to drink more milk. However, the reason why she doesn't drink as much is because she easily gets tired from drinking because her lungs still haven't matured as much as we would like. See where this is going? 

We've tried putting her on a concentrated formula which packs more calories per volume, but that problem with that is it hurts her belly and makes her fussy from the bloating. We can't give a lower concentration because she would then need to take more volume, but that makes her tired. So... we have to find a happy medium for her. We are making a milk that is more concentrated, but barely enough so that it doesn't make her tummy hurt. With that said, I think we're on to something. =)

#upwardsandonwards

Miracles never cease

Lana went to her cardiologist today for the first time since her discharge. She had another ECHO done and an EKG as well. Her physician reviewed the results before coming to our room. He paused at the door for a second and then started off with, “It’s really quite miraculous to see her progress”. He stated that it’s almost as if nothing ever happened to her. No PDA, no PFO, and no pulmonary hypertension. Aside from a minor irregularity in the right side of her heart, you couldn't even tell it apart from any other baby’s heart. As if those big gaping holes never existed.

I still feel uneasy talking about how sick she was. There were several moments where she was so close to not being alive that we would spend many hours sitting right next to her while praying in silence. The sounds of alarms and the ventilators would fill the room, and although she was sedated, we hoped that on the moments we would speak to her that she could hear us, and know that we are always by her side.

Her cardiologist told us today that he would keep a copy of her charts and her results from today to show training physicians that there is always hope. That even in the bleakest of moments, we should always have faith. Patience, persistence, and plenty or prayers.

Furthermore, since she has been doing better with her pulmonary hypertension, her cardiologist thought it would be a good time to start weaning her off sildenafil (aka Viagra). Now although I'm not a drug expert or anything, I try to keep things in order if possible. This is her current list of daily medications.

We'll try to keep things on schedule. =)

As always, thank you again to everyone who has supported Lana and our whole family through this journey. We've been blessed to be surrounded with friends and family have been giving us their unwavering support in so many different ways. We are forever indebted. Thank you!

Lana has been working on her strength during tummy time. Hopefully she can start learning to pick up her head and possibly start rolling side to side.

We were watching some television next to Lana and we noticed that she figured out how to rock herself. =)

Progeny #1 & Progeny #2 watching TV together.

Lana's 1st Doctors Visit

Today, Lana went to her first doctor's visit after being discharged. Overall, she is doing rather well. Although Lana is technically a little over 6 months old, her adjusted age is 3.5 months due to her prematurity. As far as developmental milestones for her adjusted age is concerned, she is more or less on track. We still need to work with her and give her more tummy time. At 4 months, babies are usually able to start rolling to their side, and also be able to pick their heads up while lying on their tummies. 

She will still be on oxygen for a foreseeable amount of time, but we expected that. As long as we can keep her from getting sick, then she should do well. That's a pretty tall order though. We always have to keep a sterile environment, and we also can't afford to get sick ourselves. In other words, we will be living inside a bubble for quite some time.

Her cardiologist visit will be on Monday. We will need to get more efficient at getting her in and out of her car seat while she's attached to an oxygen tank and a pulse oximeter. As it stands it's a three man job. One to hold the oxygen tank, one to hold the pulse oximeter, and most importantly, one to hold Lana. At least the switching her from the oxygen concentrator to the oxygen tank isn't too bad. We just always have to travel with a spare tank in case we get stuck (each tank only lasts roughly 6 hours at 1.2 a liter flow).

"I'm gonna make this place your home" - Phillip Phillips

So we're finally home and still trying to get settled. No doubt it will take some time to get a routine going, but things are starting to fall into place.

Let me just back track a little from this past Monday. By the grace of God we were finally discharged after 185 days of being in the NICU. Don't get me wrong, we absolutely LOVE all of Lana's nurses, RTs, and physicians, but we just badly needed to come home. Lana was surrounded by the most compassionate and loving staff I have ever seen. It was obvious that although they all wanted her to come home, they were also going to miss her presence. 

This was Lana's home for the past 6 months. Personally, this image evokes so many different emotions. It's surreal peering into an empty room that we once called our second home. It was here where we spent our darkest moments, and it was also here where Lana let her light shine.

Auntie Sommey strapping Lana in her stroller/car seat to send her off to her journey. It was a bittersweet moment. Tears were shed from both ends. 

The nurses planned to let pink balloons fly out to signify Lana's journey outside the hospital. 

An oxygen concentrator was installed to provide the supplemental O2 that Lana needs. Luckily it isn't too loud, and humming isn't too noticeable.

This is Lana's other friend, Mr.Pulse Oximeter, and he measures how well she's breathing and also monitors her heart rate.

We took some design ideas from the hospital. This includes installing a wall-mounted hand sanitizer, and it is placed conveniently next to her crib.

Totally encapsulates how special Lana is to us. Thank you Auntie Sommey.

Walk by faith, not by sight.

We are home!!! Just a short post for now, and I'll post a longer one later. We just want to let the moment truly sink in. =)

Our TENTATIVE plan is to spend the night at the hospital on Friday, Saturday, and Sunday in order to find a routine on tending to Lana. Then... if all goes accordingly, we hope to get discharged on Monday. 

Wish us luck!

St.Patrick's Day!

For sure she'll be home by St.Patrick's Day! There's still technically a chance for Valentine's Day, but FOR SURE St.Patrick's Day (to be fair, I also said this about New Years, Christmas, Thanksgiving, Halloween, etc.., but who's counting?!). The important thing is that Lana is safe and she's doing well. How many more holidays until Lana comes home you ask? As many as it takes!!!

I guess I should start by saying that Lana is actually doing really really well! She had another ECHO and her PDA closed on its own. There was a point in time where the goal was to get her stable enough to get her transferred to another hospital to get it surgically closed. It was a pretty large hole to be perfectly honest, and it gave us nightmares thinking about it. There were many days we spent more time praying than breathing. Then they noticed about a month ago that her heart murmur isn't audible via stethoscope anymore, but you can't confirm it's truly closed without the ECHO. Well I'm happy to report that after today's ECHO, her PDA is closed. Let me repeat it again, her PDA closed on its own! That's definitely something to write about. God is good! 

So what else is left? Well she's gonna come home with an oxygen tank, and a pulse oximeter to monitor her respiratory status. I took it for a whirl today and tested it on myself, and it seems pretty straight forward. She doesn't have an NG tube to feed from anymore either. All her milk and medications are taken orally just like anyone else. However, the last big hurdle is really to keep gaining weight. She's still getting used to drinking through a bottle, and sometimes she just tires out and falls asleep. She lost a lot of weight (77 grams) on Sunday night. Her physicians want to make sure that she isn't gonna keep losing weight when she gets home. Although it's a tough pill to swallow, Lana staying in the hospital for a little bit longer is what's best for her. I know some of her nurses and RTs will be happy to spend a little more quality time with her.