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. 

I Knew It was Coming

Today was the day.  Hopefully the only one, but I know by this point in this process there could be others.  I knew it would come, the day when my lack of sleep combined with small complications from Asher makes me a bit more emotional and the day a bit more stressful.
Last night actually went really well, with Asher waking up to take 3 1/2 ounces of his bottle at midnight when they took all his stats.  The best news of all . . . still no chyle, so things are looking good for no chylothorax this time around.  I have prayed and prayed that he wouldn’t get it this time, and it looks like Heavenly Father has answered our prayers.  Asher went back to sleep quickly, only to wake up at 3:00 when he needed some more medicine.  He went back to sleep quickly, so I didn’t even give him a bottle then.  He woke up again at 6:00 and took another 3 1/2 ounces, and the same thing again at 9:00. 
Dr. King came by this morning and said that if things continue in this direction, we could be going home tomorrow or Sunday.  I told him Sunday is early enough for me, because I know things won’t be quite as peaceful and quiet for me or for Asher once we get home.  :)  I also knew from experience, as he said that, that anything can happen to throw that timing off, so to not plan or count on it until it happens.  Just after his visit, the nurse came in and took out his central line, the IV that was in his neck.  Asher got a bit upset about this, but he calmed down and fell asleep in my arms when she was done.
However, just before noon, Asher all of a sudden jerked awake and started crying, quickly elevating to pretty intense crying with few breaths between.  He went from pink to deep purple in a matter of minutes, so I called the nurse and we had to bring in a team of other nurses to help him calm down and get his breath back as his O2 sats dipped into the low 40’s.  We had been just giving him tylenol with codeine alternated with ibuprofen, and I think that just wasn’t doing enough for him.  His nurse had the respiratory tech come in and look at him, because he isn’t take too deep of breaths, but everything sounded good in his chest and lungs.  He is just “guarded” with his breathing, which means he isn’t take as deep of breaths because he is in pain. 
To top it all off, during his “purple” episode, his IV in his hand, the only one left, pretty much was shot after they put the morphine in, so they had to have the IV tech come in and find a new line, which is always a challenge with Asher.  One great thing they have here though is a child life specialist, so she came in and sang to Asher and distracted him while they found a line.  She tried one foot, then tried to find one in his head before she finally was successful in the other foot.  I was glad in a way because he likes to sleep with his hands up by his face, but his one hand was always all wrapped up to keep that IV safe.  Now with it on his foot, it will give him a little more mobility.  After that, his nurse gave him another dose of morphine, just so that he could keep resting where he had had such a rough morning. 

Asher all tuckered out and resting after the first round of morphine:

This afternoon, the surgeon’s P.A. also came by.  He removed Asher’s pacer wires, and he said we should be able to remove his drainage tubes tomorrow once they do one final chest x-ray in the morning.  All of this wore Asher out, so his eating hasn’t been as good today.  He took an ounce at noon once he calmed down, and an ounce and a half this afternoon. 

Round two of resting:

I have done pretty good through all of this, but it is hard sometimes to see him going through so much pain and discomfort, and feeling like there isn’t much you can do.  I just keep remembering the scripture in Doctrine and Covenants, Section 123, that says to “cheerfully do all things that lie in our power, and then may we stand still, with the utmost assurance, to see the salvation of God, and for his arm to be revealed.”  I just try to remain positive, to pray and have faith, to care for Asher in the best way that I know how, and then to watch for His “arm to be revealed.”   I feel so blessed though that he his making good progress, and so, so, so happy that he will be able to continue to drink breast milk and even breastfeed again soon since he doesn’t have any chylothorax.  Whenever things become slightly stressful, I just think of all the ways Asher has been blessed through all of this, and they are so many!  
Meanwhile, the other boys have been so good and having fun with Grandma.  During the summer, we love to go get free lunch in the park.  My mom has taken them a couple of times this week, and then to the library.  I guess they found some Sonic comic books, and they have been checking out new ones of those and reading them for hours each day. 

The boys came up this afternoon to visit, and my mom sat in the room with Asher for a minute while I took them upstairs to the tie dying activity they had going on.  It was nice to get out of the hospital room for a minute and to be with the other boys for a break.  They had fun making their shirts, and we even made a little onesie for Asher.  I’ll have to take a picture of them once we rinse them out and wash them.  They also had fun playing in the play room, and Davis found some games to play on the TV in our room, so he enjoyed doing that.

James and Landon eating craisins and watching Davis play games; Davis playing some Pacman.

 

James loves the toaster in the play room.  He kept pushing it down and jumping when it popped up.

 

Grandma and Landon doing a puzzle, and James watching the helicopter land.

 

James was excited to find this bowling set.  He lined them all up, then handed one ball to himself and one to Grandma and said, “Grandma, you do it with me.”  He got pretty excited each time he knocked one over, and he would jump up and down and yell, “Yay!” 

 

If you look closely, you can see his tongue out while he rolls the ball.

   

With all of this going on, it’s almost hard to remember to celebrate, but today is our 11 year anniversary!  Even though we are spending it in the hospital, I’m glad we are able to celebrate Asher’s progress, and the fact that we have these two surgeries behind us now.  I don’t know what I would have done without Shane through all of this.  He is always there for me on the rough days.  Asher also turns three months old today.  It’s amazing to think how much life has changed, how much he has been through, and how much I have learned and my perspective about a lot of things in life as changed these past few months.  Shane and I did celebrate a little by getting some takeout dessert from Red Robin.  Yum!

Tonight, Asher has been much calmer.  When Shane got here after work, he gave him another blessing that he will be able to feel better and better regulate his pain.  Asher has taken his last two bottles really well, back to drinking the three to three and a half ounces again.  He seems more content and is resting peacefully now.  They brought in the mobile he liked so much last time, and he has enjoyed looking up at that too.
  
Tomorrow, we have an early x-ray and and EKG.  We look forward to them taking out two more drainage tubes (that drain from his plural cavities), or maybe even all of them.  Once those have been out for a little bit, he can get his last IV out because he won’t need his antibiotic anymore, and hopefully stop his telemetry (the probes/stickers on his chest that monitor his heart beats).  We also hope he poops!  He hasn’t for two days, and I think that is part of the reason he’s been in pain.  They finally gave him a suppository tonight so we’ll see if that works.

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.

Glenn Recovery–Day 1

It has now been a little over 24 hours since Asher came out of surgery.  Things have gone pretty much on schedule for him today.  Shane and I slept up here last night.  The bed, while great to have one, isn’t too soft, and there are machines that are going off and beeping throughout the night.  Despite all of that, I think I was tired enough that I fell back asleep pretty quickly each time I woke up.  I did have to get up around 4 to pump also.  This morning, around 9:00, they removed Asher’s breathing tube and took him off the ventilator.  They also removed one of his drainage tubes, and moved the other one to a small bulb to collect fluid instead of the big bucket on the floor. 

He was a bit restless and uncomfortable, and his blood pressure was a little higher which can indicate pain, so after they took the breathing tube out, she gave him half a dose of morphine to help him relax and rest, and it seemed to really help.   He has only briefly opened his eyes, but mainly just starts moving around when he is needing more medicine.  His cry is still weak and his voice scratchy, like he needs a big cough, mainly from the throat irritation from his breathing tube.

This afternoon, around 3:00, we were able to give him a bottle of glucose water.  It was nice to finally get to hold him.  He was excited to finally get something to eat.  He took about half of the bottle, but then he had to cough, which is so painful for him, and he fell asleep once he calmed down.  I held him for awhile while he slept, and when he woke up about an hour later and took the rest of the bottle and half of another one. 

   

 

My mom brought the boys up this afternoon, and they had fun playing some Bingo and winning some fun prizes.  They have great child life activities here, with fun things going on every day for the patients and their siblings.  They were excited to see Asher for the first time, and they gave him soft kisses on the head before leaving to go home.

Tonight, he finally got to have some breast milk.  He started out with two ounces, and he sucked it dry and was upset there wasn’t more  He had to be happy with his pacifier for now.  He can have more next time if he responds well to this one.  We are praying his tube drainage remains clear so that he doesn’t have chylothorax and have to go on his yucky formula again, but we will know more after about 24 hours of being on breast milk.  We are hoping that tomorrow we will be able to move out of the ICU and down to the pediatric floor.