A week later..

It has now (this afternoon) officially been a whole week home! We have stayed very busy with Thanksgiving, getting to church, getting groceries, doing laundry, doctor appointments, trying to organize and just feel like we are home! It's that feeling you have after you've been on vacation and finally get home...but we had a really long vacation.

On our way home from the hospital! He looked like this for awhile, then he fell asleep...the car seems to do that to him!

It has been fabulous to be at home. Weston is a very good sleeper and has slept 4 hour chunks a couple of nights. This is not the norm yet, but we'll take it. Most of the time he wakes up to eat and then goes right back to sleep once his tummy is full. If that continues, we won't complain.

Last Friday we had a doctor appointment in Monticello with a pediatrician. Thankfully the cardiologists down at the U/Children's had called him and updated him on the first month of Weston's life so we didn't have to answer QUITE as many questions. The pediatrician said Weston looked great, sounded great, and had gained more weight (7 lbs 12 oz)! All a good report.

Monday we had the home health nurse come out for the first time to check in and weigh Weston again. That is the biggest goal, to be sure he is eating enough to continue to gain weight. Yesterday he weight 8 lbs even! The nurse was also very pleased with Weston's coloring, his weight gain, his lungs sounded great, and how handsome he is :) (People all keep calling him that...guess he might get confused what his real name is!) We decided since he is doing so well the nurse only needs to come once a week so we'll see how Weston does on the same scale in another week.

Oh that tongue...but look, "So big!"

My favorite word....

today is DISCHARGE!! We got discharged this afternoon around 2:00. We are home and adjusting. We'll see how tonight goes ;)

No more tubes!

We had a great weekend! Weston was allowed to try bottle feeding at EVERY feed (every 3 hours, 8 feeds in 24 hours). Weston was definitely a trooper and did a great job working at bottle feeding before having to gavage the rest through his feeding tube. Saturday Weston finally got above his birth weight! He continued to gain weight Sunday and this morning stayed the same. They say that is due to the fact that we made him work a lot harder this weekend at his feeds. As long as he didn't go backwards, they are happy (and so are we!) Weston now weighs 7 lbs 6.98 oz.

Since Weston did so well with his bottle feedings, the NG tube (feeding tube in his nose) finally came out today! YEAH!! We have only had one feeding since, but Weston did amazing at his 1:00 feed. He is now offered 65 ml (before it was 55, which is still the goal) and he took 61! We hope the rest of the day continues to go this well so we can start discussing that "H" word...MAYBE we'll be home for Thanksgiving :)

No more tubes!! :)

Since the end of last week we have also been given permission to unplug his oxygen cord from his leg and go for walks. It still needed to be monitored while we were in the room at the end of last week, but this weekend they made the call to only spot check it! One less thing attached to our little boy!

We hope and pray the progress Weston has shown this week continues so we can begin our life at home. Thank you for all of your prayers and kind thoughts as we continue through this journey.

Big day!

Weston is already a MONTH old! Here we remembered to take a picture of his '1' onsies...we'll see if we remember every month to come ;) Won't it be fun to compare next year?

Weston got to take off his EKG leads this afternoon and get rid of the tele box they have been attached to. One more thing gone..he is almost wireless (in Jeremy's words)!

            
 
Weston is up to getting a bottle 6 times out of the 8 feedings a day. We did that Thursday and Friday so we will see if we continue that this weekend or if we get to offer him a bottle every time starting tomorrow morning. When the doctors come around in the morning that will be reassessed depending on if Weston continues to gain weight. It is a difficult balance to figure out how much to push him with the bottle in order to learn those oral skills, yet not to burn too many calories.

We have had an entire week of weight gain, which is awesome and in the right direction! The weight gain and feedings both have to happen before we are allowed to go home and this week we feel like Weston has been doing an awesome job of both these things!

Here Weston is sleeping in MorMor's arms. We are discovering he has a ton of fun facial expressions in his sleep and apparently could turn into quite the dramatic little boy someday...

Thank you for your continued thoughts and prayers. Weston is definitely on the uphill journey that we hope continues so we can be home soon.

Perspective

I have to admit, it's not easy sitting here everyday working on being patient to give Weston time to catch on to feedings at his own pace. It's hard when there is nothing I can really do in order to help him and we have two really good feedings, then a not so good feeding. I try not to get too discouraged.

I was reminded tonight that it could be much worse. I don't mean that harshly, but another Mom on the floor has her daughter here. They have been here a month more than us and they have another surgery set up tomorrow, as well as a plan for a G tube in order for her daughter to eat because she isn't catching onto feeding at all. She has 3 other boys at home and they live in North Dakota so she can't go home or see her husband and other kids more than every couple of weeks. It's all about perspective, isn't it?

As for Weston, he is starting to slowly gain weight and slowly catch on to eating from the bottle so he gets enough calories. It is still day by day to make sure he gains weight and isn't burning more calories than he is taking in. We did get to add a 5th oral feed today (that means he is offered a bottle 5 out of his 8 feeds) and hope to continue that into tomorrow. We don't want to do too many different things at once so he is pacing himself and we know what the variables are if something doesn't go as planned.

Keep praying Weston is on the up swing and continues to gain weight and catch onto this whole eating thing. They definitely go hand in hand as we take being here day by day. I hope you will take a moment to pray for the other family (and many families) that are also here dealing with similar situations, or things that can be considered much worse.

Another day...

Weston has been off oxygen for over 72 hours!! We are hoping that hurdle has been crossed and we won't have to go back on at all ;)

As for feedings, that has been a little more of a struggle for the little guy. Saturday he was given a 'day of rest' when it comes to how hard he has to work to eat. Because he is a 'heart kid', every time he eats, either nursing or from the bottle, it is like he is running a marathon, or at least a 5K. He has to work very hard to suck, swallow, breathe, while still maintaining his oxygen levels throughout his body. What the 'day of rest' meant was that for 24 hours, Weston didn't work at all to get the food to his tummy but received all of it through his feeding tube. His body still had to process everything and his stomach did fairly well at keeping everything down.

Sunday we gained weight!! It wasn't much, but it's heading in the right direction, so hopefully that means Weston's 'day of rest' helped his body not work so hard to put on calories. From Sunday morning until Monday morning, Weston was given one feed through his tube so he didn't work, and then the next time we offered him a bottle so he is still working on his oral skills. If he didn't take all the calories the doctors are saying he needs, then he got the remainder through his feeding tube.

Monday morning we gained weight again! 2 days in a row! We are leaving the feeding plan the same throughout today and into tomorrow morning when Weston will be weighed again to see if the plan continues. Until this evening Weston was doing a great job of keeping everything in his stomach but the last two feeds he has spit some of it back up. We are trying to pay attention to how much movement he gets after eating and seeing if that is why his stomach is upset or if there are other factors we need to be aware of. Everyone just wants him to get the calories he needs in order to gain weight. We will see how the feedings go throughout the rest of night and into tomorrow morning.

The hardest part right now for both Jeremy and Ellie is that we can't do anything to help Weston learn to eat or keep his food down, or to make this process go any faster. We have to let Weston take his time and learn how to do this on his own. It's not easy and either of us would do anything to help fix it if we could.

We had a Care Plan Meeting today where everyone was finally in one room at the same time. It was helpful but we still don't understand why it didn't happen a week ago when we first came upstairs. We partly feel like we've lost time and now, unofficially, will be here another week or two, still depending on Weston, but being realistic in his goals. It's not easy to think about staying another week but we don't really have an option.

Yesterday (Sunday), Ellie asked if we could put clothes on Weston since he doesn't have the oxygen tubes and most of the others are much easier to move. The nurses said that wasn't a problem so here are a couple pictures from the last couple of days of Weston wearing clothes!

His shirt says "See you later alligator!"

I wish it said "Aunties" even if his face doesn't show it.

We both got a laugh out of this one. Jeremy was holding Weston and once we put him back on the bed to change him, this is how he looked...not very swaddled, huh? lol

Thanks for the continued cards, gift cards, gifts of money, prayers, kind words of encouragement, and visits. They are all greatly appreciated and noticed. Keep them coming!

Time

People want an update: Well, I'll try but there really isn't much to say.

We are still sitting at the hospital with no exact date of discharge because every time we ask that question the answer is: "It's up to Weston."

He has been on and off the 1/32 liter of oxygen again in the last few days so that will continue as his stats show that he needs it. If he doesn't need it, we shut it off, if he drops too low, they turn it on until his stats go back up....on and off, on and off.

We had a frustrating couple of days with no official plan on how to help Weston gain the weight he needs and work on his feeding that has to happen in order to go home. Wednesday Ellie felt very overwhelmed with all the different opinions on what to do for feeding Weston and didn't know who to listen to. Finally on Thursday a plan was made and it has been altered a little bit last night after speech (who work on sucking and swallowing) but we've stuck to it and just have to give Weston time. The hardest part is we don't know how much time he will need before he will 'take off' and catch on to feeding and gaining weight, so here we sit.

That's about it. Still have those two goals: staying off oxygen and working on feeding. Continue to send the good vibes and prayers for Weston to continue healing and begin building up his stamina for feeding and for his tummy to handle the amount of calories he needs in order to gain weight and grow.

It's a waiting game...

Now that we are upstairs, or on the 'floor' as they call it here at the hospital, it feels great to be one step closer to home, yet it feels like not a lot happens around here most of the time. When we moved upstairs, Weston was given two jobs before we will be allowed to go home:
1. Wean oxygen
2. Work on feedings

As for number 1, Weston is doing really well. He was down to 1/32 of a liter of oxygen going into his nose and was off and on that since we came up stairs. It has been almost 24 hours since he has had any oxygen and his levels are staying in the 90% range. (They want him above 92%, yet a resident said that this amount of oxygen is so small "it wouldn't keep us here".)

Number 2 is a much slower process, which is hard to understand because it is something we will continue to work on even when we are allowed to go home. Weston has been switched to every 3 hour feedings which means Ellie nurses or we bottle, then we give him the rest through his feeding tube in his nose. They want him to be eating 55 ml every 3 hours at this point (but still have enough of a break in between to actually get hungry enough to eat!). In order to do our best job estimating how much he is getting from Ellie, she has to weigh him with a clean diaper, then feed him, then weigh him again and do the math (in kilograms) to figure out how much he is eating. This isn't an exact science, which is another reason it is difficult and can be frustrating. He is eating around 30-35 ml from Ellie, from what we can tell, so we just hope that number keeps going up as he becomes more coordinated and has more practice. Weston and Ellie will continue to work on this...but would love to hear of an approximate time to go home, especially when the nurses even ask if it has been talked about! Maybe when they come by for rounds soon, who knows...

Here is a picture of Weston this morning, sleeping away so I can type this ;)

Moving on up!

We haven't posted for a couple of days because nothing has happened. We've been sitting around, enjoying holding Weston, but just waiting for the 'all clear' to get moved upstairs. Once that happened, we were told there wasn't any room for him so we sat another day in the CVICU until yesterday afternoon, around 4:00 we were told we get to go upstairs!

The reason this is so exciting is because it means we are one step closer to going home. Out of the ICU and on our own a little more, but still being monitored. We don't know how long we will be here, that is determined by Weston and how well he does feeding as well as when he gets off the oxygen. He is on 1/16 of a liter for oxygen, but when we try to go off completely he doesn't do as well. We are hoping today to go down to 1/32 and see how he does with that, then maybe wean him off completely. The nurses say it seems like nothing to us, but obviously it helps him just enough to keep his breathing in the 95-100% range, where we want it. This means taking deep breaths and filling his lungs which he eventually needs to do on his own to go home.

Last night went well, Weston didn't nurse a lot, but he slept a lot! Which is a great thing to help him heal and to help him continue to grow. He gets fed through a tube for a couple hours so he is getting lots of nutrition, then they stop that for an hour and let Ellie nurse before feeding him again. Hopefully today that can go to 1.5 hours of feeding and 1.5 hour break to get hungry enough to nurse. We'll see what the doctor says. Again, he has to nurse to go home, so those are our two big goals for the next several days.

Thank you for your continued prayers and support. We are so happy to be moving up in the world and in the right direction towards home. I'll close with a picture of Weston sleeping in my arms yesterday: one of the best things I get to do as a Mom :)

Ups and Downs...

Today was fairly stressful for Mom and Dad. Jeremy went to work for a few hours while Ellie drove down to the hospital and sat with MorMor (her mom) for awhile, holding Weston. It feels great to be able to hold him again! Throughout the day there were a lot of doctors, speech therapists, occupational therapists, nurses, surgeons, ect coming in and out of the room. There were also a lot of plans that kept changing every time someone walked in, therefore: stressful.

Everyone was worried about Weston's right diaphragm being paralyzed, or sluggish. There was talk of re-intubating Weston which no one was excited about, then they ran more ultra sounds and x-rays and decided to see if Weston can work it out on his own rather than having to go back to the OR. Obviously, that is the hope so keep praying ;)

By the end of the day, nothing is going to happen at this point, we are just going to give Weston time to see if his body can figure it out. He had lots more tubes removed today as well to see if those were causing some of the issue. Now he has his pacer wires out (they hadn't been used for a few days), his chest tubes out, and his umbilical line (through his belly button) out! It was a busy afternoon for Weston! It is so much easier and nicer to hold him again without all these things on his body! The covering over his incision has also been removed so it's something we have to be aware of and careful of not moving him too much so that doesn't stretch.

Before we left, we got a couple of good pictures of Daddy holding Weston as well as an attempt of the 3 of us in our new little family :)

            


Overnight went well again. They started feedings of breast milk through a tube so hopefully that will continue throughout the day today and maybe Ellie can start nursing again. It's going to be a slow process since Weston has to re-learn how to suck and swallow, but hopefully now that his heart is fixed he wont have to work so hard at the breathing part at the same time!

We are trying to be very optimistic yet realistic in our timeline of Weston getting better and getting to come home. Keep sending good vibes that he handles the feeding well and hopefully the oxygen level can start to come down. That happens, then we can go upstairs to 'the floor' which is one step closer to home!