Happy Easter!

First of all, Happy Easter!  It is a bit different to wake up Easter morning in a hospital room with a one-week old baby instead of home with three little boys running around the living room searching for eggs, but it was still a glorious morning with beautiful blue skies out my window and a beautiful, growing-more-healthy-and-strong-everyday baby to spend the time with.  I was able to spend a little time reading on lds.org too, which was a nice relaxing Sunday activity.

Asher with his mohawk and camo blanket:

Last night was a long night with Asher.  I wasn’t quite as stellar as Shane at getting him to take the bottles, but he did all right.  He usually took about a third by bottle, so I was happy with that.  That’s a good point to work from.  He also had a bit of trouble with his oxygen saturation levels (the amount of oxygen reaching his outer extremities) from about 2-3 a.m., and after the alarms had gone off several times, they finally turned on a little bit of oxygen for him again.  That is pretty normal, where they will go on and off the oxygen for awhile until they are ready to be off fully.  They turned it off again this morning, and he has been doing good since then.  He now doesn’t have the oxygen tubes in his nose!

 

One of the main frustrating things is that he is still gagging/throwing up.  He did it again this morning, and then this afternoon too.  We switched to a slow-flow nipple, to a lower calorie formula, and to slightly less volume to see how he does with that.  The doctor said that sometimes the feeding tube can cause them to gag more than normal.  We’ll see what the next 24 hours brings.  It could also be that he is a baby that has reflux issues too.  I hope we can get it resolved soon.  Shane came and gave him a blessing after church, so we hope that will help.  I just feel so bad for him every time he gags and throws up.

Meanwhile, the boys had fun looking for the Easter eggs around the living room this morning.  After church, lunch, and James’s nap, they came up to see me, and we spent a little time outside looking in their Easter baskets and enjoying the beautiful sunshine.  My mom stayed up with Asher so Shane and I could go home to eat dinner as a family.  It was a much-needed break from the hospital.  Shane and I are both staying up here tonight, so we’ll see how that goes!

             

Happy Easter everyone!

My favorite Easter video I found on lds.org today.  I’ve seen it before, but it was definitely worth hearing again:

I especially love the quote when he says, “Because Jesus walked such a long, lonely path utterly alone, we do not have to do so.”  I am especially grateful for that on this Easter day, that there is nothing we have to go through in this life alone.  I don’t think I could do this without that knowledge.

Moving to the Pediatric Floor!

Today was a huge day for Asher.  He moved out of the Peds ICU and into the regular pediatric ward.  He also was weaned off his last little bit of oxygen this afternoon, and has been breathing room air since then with no problems!  The rooms on this floor are much more quiet and private, with a closed door instead of a big window along the entire front of the room, a shower in the room, and less equipment.  Before the move, Asher also had a great night with Shane staying over with him.  He took 100% of every bottle, and didn’t have to use his feeding tube at all.  He also had his two side drainage tubes removed, so he only has one drainage tube left in the middle, which they should remove in the day few days. 

The view of the Fremont bridge from our old room:

All of that progress must have worn him out a bit, because today’s bottles have been more like 30% by bottle, the rest by the feeding tube.  He also threw up/spit up a ton twice today, once after his feeding tube (she thinks she did it too fast), and once after a feeding.  We’re going to try the slow flow nipple next time to see if that helps.

Our new room:

   

Tonight, we gave him a little sponge bath to clean him up a bit.  His nurse was pretty excited that he had enough hair to actually comb, so she styled his hair with a nice Mohawk hairdo.  She said he needed a fighter look because he’s a fighter.  :)  

My mom came up with me this morning for awhile while Shane took the boys to Landon’s baseball practice, fed them lunch, and had a nap (he deserved one too after his long night!).  My mom had a fun Easter egg hunt for boys in the afternoon.  Each egg had words that they assembled into a clue to find some Easter goodies she had brought.  It was a GORGEOUS day - mid 70’s and beautiful blue skies.

 

I came home for a few minutes to watch them color eggs before heading back up to the hospital.  We had some glitter eggs and some marbled eggs too, and the boys had fun making different ones.  I always love decorating eggs, and wished I could have stayed to decorate some with them.

       

After coloring eggs, they had fun playing outside while Shane mowed the lawn.  Our neighbor brought over a box of drumstick ice cream cones, so they all were excited to enjoy one of those.  We talked to the boys about maybe telling the Easter bunny to deliver their baskets up here for them to get after church so that I could be there when they see them.  They decided that was a good idea, and Landon made sure to write the Easter Bunny a note before bed so that he would know where to take them.  It says, “Dear Easter bunny. Please leave the eggs at Asher’s room in the hospital.  Thanks!”  Hopefully the Easter Bunny gets the message.  :)

 

A Much-Needed Day with Asher

Sometimes, as we go through this experience with Asher, Shane and I feel so buoyed up and positive, and then there are days, as Shane described it to me yesterday, that we feel like Peter, sinking in the water and struggling to keep our minds focused on our faith in Heavenly Father and his plan for our little Asher.  Wednesday and Thursday have been days that were a bit more like sinking, as we found out about Asher’s chylothorax setback and his dislike of the formula he has to have, his steadiness with his oxygen flow and not seeing much decrease or progress there, and other things.  Even though there are so many miracles, sometimes the discouragement settles in, and we momentarily lose sight of the reassurances we have felt in the past.  Last night, I read the words of the disciples as they were in the raging sea while Jesus slept, when out of fear they went to Him and asked “Master, carest thou not that we perish?”  I felt as if I was being asked the same question Jesus asks them, “Why are ye so fearful?  how is it that ye have no faith?” 

Today was a day of small but sure answers to prayers for Asher. We just need to remember Christ’s words, “Peace, be still.”  Asher showed some good improvements today.  He has been taken off his high-flow oxygen, and he’s just receiving a little bit of oxygen, barely above the percentage of regular room oxygen.  Our cardiologist had been out of town, but he stopped by this afternoon and told us that Asher is ready to move out of the pediatric ICU and to the regular pediatric floor.  His chylothorax seems basically cleared up, so he should be ready for breast milk in four weeks instead of the six we were first told.  The one negative thing is that the conduit that sends his blood to his lungs is already a bit restricted, so he may have to have his second surgery, the Glenn on the earlier side of things instead of later.  They usually like to do it between 3 and 4 months, but it sounded like it would be more like three months, or maybe even just shy of that.  We will just have to pray that his conduit stays open and clear and doesn’t restrict anymore, and that Asher can grow and develop the veins to his lungs so he will be ready for the second surgery when the times comes.  Asher also did better with a couple of his bottles, and awesome with one of them.  It just gave me hope to have more and more success with the bottle in the future.  I’m new to this bottle-feeding, as I have only fed my boys bottles on occasion  when they were older, so it is a learned skill for me too!

Asher was more alert for periods throughout the day too, so I got to be there for him to see when his eyes opened.  Shane came up after work and had some nice cuddle time with him too.

     

Meanwhile, the boys had another great day with Grandmas.  This was Christie’s last day here, so she spent the morning at home with the boys, then came up here with Kelly to see Asher on her way to the airport.  We were glad to see Asher wake up and get a chance to look around at Grandma before she left.  It will be crazy to think about how much he has grown before she comes back the first of June for a visit!  We have been so blessed to have her here to support us during this last week.  Between her and my mom, Shane and I had no worries about the boys or things being taken care of at home. 

The boys had a fun day, making nests out of shredded wheat, and playing with some eggs with chick faces on them.  My good friend Kara called up my mom this afternoon and asked if they wanted to all walk to the park, so they got to go to the park and play outside in the beautiful spring weather we’re having.

 

Tomorrow we move to the peds ward!  We’ll see how different/the same that is from being here.  I plan on staying up overnight all the time once he’s there.  Shane is going to stay tonight with Asher too.  Our nurse case manager said things are looking good to maybe go home in a week or so.  We’ll see what this next week brings.

A Sleepy Day and Easter Egg Hunt

Today Asher turned one week old!  It seems like a lifetime ago since he was born with all that has happened.  Although it has had its amazing moments to see the miracles happening, I’m glad the stress of the first week is over!  Today has been a sleepy day most of the day for Asher.  When I got here this morning, they told me that he was a bit fussy through the night, so I guess he is getting his sleep in today.  That’s probably not a good sign for his night nurse though! They have mentioned a few times how he has an attitude, and lets it known when he doesn’t like something!  I guess he has to be a fighter that way. 

I have just tried today to not be disappointed with his amount of bottle intake versus his intake with the feeding tube, and to instead be glad that he can rest and try to recover and regain more energy so that hopefully soon he will have more energy to eat more.  They did finally take his central line out of his neck, and it seems like the fluid leaking from his chylothorax is very minimal and already pretty dried up, so hopefully that means it’s not too severe of a case and will heal quickly.  They switched him to a different brand of formula, but he didn’t seem to like that one much better.  It’s hard to know though if it’s just because he was so tired today, or if it’s because he doesn’t like the formula.  He still needs to get his oxygen down a little bit, and when he gets mad, his oxygen saturation levels drop significantly, so they are still watching those before they move us out of the PICU.

Here are just a few shots of the sleeping cutie pie:

 

And one shot of him showing off his scar (we need to ask the nurses for a new pacifier that isn’t pink!).  He still has a main drainage tube from the scar, and two on the sides that are draining where they chylothorax is.

Shane went back to work today, so I was up at the hospital alone for part of the day, but I also had my parents around for part of the time too.  I can’t drive yet, so they brought me up and stayed for awhile.  My dad is headed home today after being here for a  week.  I was so glad he could be here to meet little Asher, and to help entertain the boys when I couldn’t.

The boys had a bit more mellow of a day.  My dad wrote up a fun treasure hunt for them this morning, which had some books from grandma a the end.  The boys then had fun hanging around the house with Christie, going to the dollar store and the park, and then with my mom too once she got home.  Christie went and met Shane at work, and they drove up to the hospital together to see Asher.  When we got home, we had our Easter egg hunt.  Kent and Christie have, for the past few years, brought us tons of Easter eggs that they have pre-filled with candy for the boys.  Usually it arrives as a package in the mail, but this year Christie brought them out herself, and she was able to be there to watch the boys enjoy the annual Easter egg hunt.  It was already pretty dark outside, so the picture turned out a little bit dark.  They were excited to open up their eggs and find the goodies inside.   James exclaimed, “Wow, Look!” with each one he opened.