Slowly But Surely

Life here has been pretty quiet the last two days.  It has been nice to be home again to relax and be with the boys.  Asher has been slowly recovering, with us still trying to figure out the best balance for his pain medications.  He’s been having some stomach aches, which yesterday made it difficult each time I tried to feed him because he would cry and pull off.  Now that I know that’s what’s going on, I hold him and gently try to burp him, and usually once he does, he calms back down and can finish eating.  He did much better today.  Today he had hardly any of the tylenol with codeine, which seems to upset his stomach more, and he seemed to do better and still be able to manage his pain okay.  He hasn’t slept very well during the day, but he’s never been a great napper.  He has slept well at night though, sleeping from 9:00 pm to 3:00 am.  When he wakes up to eat, he has a harder than normal time getting back to sleep, but we’re glad he is able to sleep so good until then. 

Asher hanging out in his vibrator chair – he seems to like to be swaddled more, maybe because it keeps him from moving around too much when he is in pain.  He also really likes being in his vibrator chair because it keeps him propped up a bit more.

 

The boys have been really good, and it is nice to be home with them now.  Last night, we had a Family Home Evening lesson about the Nephites building up their walls of defense around their cities.  We made our own walls, then talked about how we can build up our defenses against Satan.  The boys wrote their ideas down on popsicle sticks, and we added them to our fortress.  We then played a rousing game of Duck, Duck, Goose (in which Dad was definitely the most popular goose), and then had some yummy homemade oreos. 

 

Landon and Davis are going to Bible camp this week, so they are gone in the mornings.  That has been kind of nice for James to have some alone time to play.  He gets Grandma to play with him quite a bit, building towers and playing with his letter transformers.  Asher requires more attention, kind of like having a newborn again, so I am so grateful my mom can be here to take care of the boys so that I can focus on Asher and what he needs.

 

Home!

I didn’t get a chance to post yesterday because in the evening, Asher became quite fussy.  He was calm as long as I was holding him, but anytime I put him down, he would scream and scream.  We finally got him to sleep in his bed around midnight, and he did sleep there until 6:00, just waking up at 3:00 to take some medicine and for me to feed him quickly before going back to sleep.  With all of that, though, I didn’t get a chance to post about the day.

Overall, Asher did a lot better yesterday.  He had a bit of a busy morning though, with Dr. King showing up around 8:00 a.m. to do an echocardiogram, then he was wheeled downstairs in his bed to get a chest x-ray.  Following that, he had an EKG.  Once everything was reviewed and found clear, the surgeon came in and removed his three final drainage tubes, and while they were at it, they also removed his last IV at the same time.  They also discontinued his telemetry monitoring, so he got all the stickers off his chest that were monitoring that, and all that was left was a probe on his toe for his oxygen saturation monitoring.  He had sticky marks all over his body from the tape, and his skin was broken out and red in spots from so much being on there.  He still had three bandages on his chest where the tubes came out, and those need to stay on for a few days.  It was still nice to have everything else off though.

My mom brought the boys up around lunch time, and they brought some happy meals to eat while they visited.  They then watched Winnie the Pooh there, and they were laughing pretty good at it.  Meanwhile, my mom held Asher for a minute, and he was feeling pretty good then and even smiling a little at her.

   

That evening, like I said before, Asher got pretty fussy, and we had a hard time calming him down and getting him to sleep.  It started when he had to take his meds, which he has quite a few.  He has done really well with the, but this time he just got really mad, and we had to give him all four doses while he was screaming.  There is one that is a blood pressure medicine that he seems to especially not like.  I then fed him, and I tried to put him in his bed, but he just got upset.  Shane and I tried back and forth, but we finally gave up and I held him for an hour and a half until it was time for his next pain medication.

Asher all tuckered out after his screaming over medicine:

 

Luckily, after that, he slept in his bed until 6 in the morning, but after that we couldn’t get him to sleep in his bed anymore until we left the hospital.  Shane and I took turns holding him while we packed up to go.  Finally, as we were about to leave, he was awake, and Shane put him back in his bed one last time.  He smiled and looked at his favorite mobile until it was time for us to go.

   

When we got home, we found these notes on our door, and these beautiful plants from some friends in our ward!  What a nice surprise!  I can’t wait to plant them in our yard.  They definitely brightened my day.

   

Asher seems happy to be home too.  He has still been fussy and cried out in pain at moments, but he has smiled a lot too, and had fun seeing his brothers and grandma again.  He has quite the medication lineup over the next few weeks, so hopefully I can keep up on it all plus get him to take them!  I’m sure he will need to be held a lot more this week, and more fussy as he doesn’t feel good, but hopefully he can gradually feel better and better.  I’m glad my mom will be here to give me breaks from holding him, and to take care of the other boys so I can focus on Asher.  That will make the week go by so much smoother!

 

Thank you so much for all of the prayers and support.  We still have a long ways to go with Asher to recover from this surgery, but I already feel a huge weight being lifted as we can check off his first two surgeries and the high-risk period of the first few months of his life.  We have had so many prayers answered with how well Asher is doing, and know that our prayers and faith alone could not have brought about this miracle baby. 

Moved to the Pediatric Floor

Last night was another fairly good night, with Asher sleeping good and eating a little more at each feeding.  He did wake up once crying pretty hard, and we couldn’t console him, so his nurse gave him a little more morphine to calm him and help him go back to sleep.  This morning, I took a few minutes while Asher was sleeping and went to the Family Wellness Center they have here to run on the treadmill.  It felt good to get the chance to exercise a little after sitting in a hospital room for two days. 

Once I got back, they were pretty much ready to move us down to the Pediatric floor.  I was excited because in the PICU, you have your own room, but there is no shower, and the front wall is just windows, so not too much privacy.  The room is also more crowded just because there is so much equipment in there.  The peds floor is much more private, with a door to close and a shower in your room.  The nurse here as been really good, and she has been trying to manage his pain with just Tylenol with codeine alternated with ibuprofen.  That seems to be working well, and then he doesn’t get the extreme drop when the morphine wears off.  We wrapped him in his own swaddle blankets, which are so much softer and bigger than the hospital ones, so it is easier to get him nice and cozy. 

He had the blanket kind of up on his face, so I tried to pull it down, but he got mad, so I decided to just leave it.

 

We no longer have a view of the Fremont bridge – just all of the trees.  It’s still pretty though.

 

When Asher is asleep, and I don’t need to pump, it seems so quiet in here I almost don’t know what to do with myself without three other boys to take care of, laundry to wash, a house to clean, meals to cook, etc.  It’s kind of nice for a change.  This afternoon, my mom brought the boys up to the hospital again.  They had some pictures they had drawn and wanted to show me, and then I took them up to a sand-art activity while my mom stayed with Asher.  They had fun choosing what colors to put in their bottles.  Landon did a cool bottle, and Davis and James chose a baseball and soccer ball to fill with sand. 

After they left, I fed Asher another bottle.  He’s been taking about 3 oz each time, which is about an ounce less than his average, but still pretty good.  What I have been most anxious about all day is if he will have any signs of chylothorax in his drainage tubes (which required him to go on the yucky formula last time instead of breast milk).  As of 5 p.m., still no signs of it.  If his next one is clear, we should be past the time when it would have shown up, so we are praying that it remains clear.  After I fed him, I held him for awhile while he slept, and when I moved him back to his bed so I could pump, he woke up for a few minutes.  It was the most peaceful and most awake I have seen him since his surgery.  He was only that way for a few minutes, but it was nice to see his big blue eyes looking around calmly.

 

Tonight, he got pretty upset again and wouldn’t calm down.  We were debating on whether or not to give him morphine, but decided to wait a few minutes to see if his ibuprofen kicked in.  He did calm down, and then he was awake again for awhile this time, looking at Shane while I held him.  He even started cooing and gave a few half smiles.  It is nice to see some more of our sweet Asher coming back.

Tomorrow we’re hoping to get his pacer wires out, his smaller drainage tubes if there is no chylothorax (he still has two smaller and one bigger one), and maybe another IV (he still has two, one a central line).  Our nurse tonight is one we had last time and really liked.  It has been kind of fun to see some of the same nurses again this time around.  It is a beautiful hospital with amazing people taking care of Asher.

Welcome Home Asher!

Today, Asher turned two weeks old.  It seems like a lifetime ago that he was born with all that has happened in between.  I can’t believe it has only been two weeks.  It has been so amazing to see his progress every day, from getting off the ventilator, getting off the oxygen, improving on his feedings, getting out his drainage tubes, removing his feeding tube, and now finally going home.  We still have a lot to work on, mainly his bottle feeds and helping him gain more energy to eat, but I feel like he is steadily improving each day.  I look back at how far he has come in just even the last two days, and I feel like now he will just keep making steady progress in the right direction.

This morning, after the nurse weighed Asher, she came in and told me that his weight was up.  When the cardiologist came by this morning, he said we could go home today.  We still need to work on the volumes of Asher’s feeds, and he is still struggling a bit with the higher calorie formula (diarrhea and some occasional throwing up), but not as much as before. 

One last hospital bed picture (well, at least for this time around):

James came up with Shane to pick me up from the hospital.  They had a wagon to load up our stuff in, and James had fun riding in it while Shane took our stuff to the car.  He also found a bag of Doritos Shane had up there, so that kept him occupied for awhile also.  Before long, we were ready to go! 

 

Davis stayed home with Grandma to help get the house ready for Asher’s arrival.  When we got home, we saw him sitting in the window watching for us, and a huge grin broke out on his face!  We also found this note he had written on the front door.

 

Davis and James were so excited to hold Asher.  They each took a turn as soon as we arrived home.  I had to make them go away when I fed him his bottle because they wanted to be right there, giving him toys, holding up his doggy in his face, etc. while he tried to eat.  Poor kid.  Guess he might as well get used to it now.

       

A little bit later, they each wanted another turn, until they heard Asher making some sounds in his diaper.  Then they were done.  :)

 

Uncle Kelly also stopped by, and he got to hold Asher for the first time too.  I’m sure Asher will love his Uncle Kelly as much as his brothers do!

 

We didn’t get any pictures of Landon or my mom holding Asher, so we’ll have to do that tomorrow.  It is so good to be home!  We still have a long ways to go with Asher, but thank you to all of you who have been praying for us and following along on with Asher’s surgery and recovery in the hospital.  I can’t believe we have to redo it all in just a couple of months for his second surgery, but we’ve heard the recovery is much faster and easier the second time around.  Now we’ve just got to rest up, keep getting Asher to eat, and enjoy having this sweet little baby in our home.

One More Day (Fingers crossed!)

This morning, when Dr. King came by to check on Asher, he said his weight was down again a bit, and so they wanted to keep him through the afternoon to see how he did with the higher-calorie formula again.  I was very wary to try it, since I just hated seeing Asher spit/throw up, and I had seen it so many times before.  For his first feeding, he took 50 ml (he had been taking 70 ml of the lower-calorie one).  I didn’t move him for 30 minutes for fear it would make him throw up, but he kept it down. 

The next feeding he was really tired, so I only got him to take 40ml, so we did another 40ml only two hours later instead of three.  This evening, he has taken about 60 ml twice in a row, and still no throwing up!  His doctor and I decided together that one more night would be good to make sure he continues to do well with the higher-calorie formula.  I am hoping he gained a little so we can go home tomorrow.  We’ll see how he does through the night.

I don’t have too many pictures of today, but here’s just a few.

My mom brought Davis and James up for lunch again.  They were a bit too excited to “help” Asher with his bottle.

   

Asher sleeping, and his equipment in the background:

 

Asher’s board:  They have this board in the room to write down what Asher is doing, his plan, and goals.

 

We’re praying for a good night, some weight gain, and going home tomorrow!  We are so grateful that he has kept his higher-calorie feedings down today.