First Shower

We have found so much laughter in our home with Baby GL these last few weeks.  His spirits are so great.  I even made my first attempt changing his g-tube button, which I have been avoiding for weeks. It's a daunting thing to think about.  This button goes into his stomach so when you take it out he has this exposed hole.  I managed to have my husband distract Baby GL while I deflated the mushroom that kept it in place in his tummy.  The mushroom, which is just a balloon, is filled with about 4cc of water.  So, syringe the water out, slowly wiggle the old button until it comes out.  Difficult task when Baby GL is squeezing into his stomach, contracting the muscles.  I can't imagine this is the most comfortable feeling for him.  I managed to get it out and getting the new one in wasn't bad.  It was just get through those contracted muscles and tissues.  Once in, syringe back in about 4 cc of water and POOF! We're done!  Now we hope the next time it comes out it's out for good.

Unfortunately, his eating habits lately haven't shown us he'll be getting that tube out anytime soon.  He finds playing with the bottle more entertaining than drinking it. He bites down then throws out a giggle an he knows you're watching.  It's out never ending battle, but it's also so darn cute.

Last night I had Baby GL laying tummy to tummy with me.  I tried tickling him in his rib cage area and he reacted with the largest smile and tuck of his head.  He was so so cute!  When he laughs he opens his mouth wide and then drives his head down into his hands. Every time I tickled him he did it so I think he has realized something new. That's the first time for tickling.

The greatest thing that makes me laugh with my husband and him is when he changes Baby GL's diaper.  Baby GL loves to press his feet into the floor to arch his back and lifts his head like he's looking behind himself.  Well, this is how he moves.  He jumps, jumps, jumps until he managed to get himself off his play mat and across the floor.  I've learned to put a blanket down next to the play mat and make him skooch himself to the play mat.  He proves to me over and over that this is not hard.  Well, now when my husband changes his diaper he jumps and skooches himself out of the diaper before my husband gets it fastened.  It takes him many tries until he finally can get that diaper on him.  He hasn't learned to move quickly like all us mother's of the world.  Daily, Baby GL shows us something new.

Today, I decided to introduce Baby GL to the shower.  It's bath day so why not try the shower.  Mommy and baby bonding time.  I took his oxygen off so not to make it an obstacle course in there.  I thought he may cry with the running water on his back, but he really seemed to enjoy it.  He looked for where the water was coming from and just took it all in.  I think he enjoyed being upright for the shower, as well as Mommy having to hold tight so he didn't slip out of my arms.

Our next thing on the agenda will be Monday.  We'll be having another swallow study to see if we've beat the aspirating.  Baby GL has been taking a bottle really well and shows us, by coughing, if he aspirates some.  That's a great sign and shows us he reacts to correct the aspirating.  

Developing

We've been getting over colds in our household.  Because of us getting a little sick we have to be very careful about not making Baby GL sick.  I think we did ok, he hasn't yet shown symptoms of a cold or anything worse.  We have been battling more with his feedings.  He did really well taking his bottle after coming from the hospital.  Now he doesn't seem much interested.  We have had to resort to more tube feedings which he's not crazy about.  We're back to his vomiting fits again.  I was so frustrated the other night with him not eating so I reconnected the feeding pump for a few hours just to get something in him.  It's a constant battle. 

The nurse visited this week.  His weight was only 11lbs 13.5oz.  Not much gain over the week, unfortunately.  It's hard to say why. He really can't get much more into his tummy so we know going up on the food isn't the answer.  We'll see this week if anything has changed.  Hoping for 12lbs.  The nurse seems to think we can be discharged again from her services.  Baby GL is doing very well and there isn't much that she does anyway.  Her visits are just to weigh him and check his vitals.  Even with discharge she'll be back once a month for his synergist vaccines.

We finally were visited by Birth-3, a program for children in need of developmental care.  They set up time with OT, PT and Speech teams to work with special needs children.  Once they are 3 if they still have special needs the school district begins offering assistance.  After our initial evaluation with a social worker we have to have an evaluation of his needs with therapists and that's not for a couple weeks.

We had the start of our follow-up appointments this week.  It was the big one measuring his development.  A lot of questions by the nurse about how he is at home.  That was followed up by OT, PT and Speech doing an evaluation on Baby GL.  They rolled out a carpet and all sat on the floor and played with him. Purposeful play.  They watched for how he grabbed things, was he able to reach across his body, bring things to his mouth, etc.  They even called out his name to see if he knows it.  He reacted and looked at the one speaking so he passed that test.  Overall, his movements and range of movements mimic a typical 4-5 month old.  Not too far off his corrected age of 7 months.  His vocals are closer to a 3 month old which is not surprising since he's been intubated so many times.  Their recommendation was to get Baby GL weekly visits with a physical therapist.  Birth-3 tends to not offer enough therapy services so we are mostly likely going to have to outsource our therapy.

After therapy we went upstairs for a hearing test.  He passed with flying colors.  No worries with him hearing.  in fact he shows up he hears so well that he's actually oversensitive.  He is startled by most any sudden noises.  Also by any quick things happening in his range of sight.  I guess it's typical with some babies and preemies.  That's another thing we'll be working on with him.

It's coming to a point that we will need to work even more each day on his needs.  His favorite thing is being on the floor playing.  While I'm sitting here writing about Baby GL he just let out the loudest burp. Just shows how big he's getting.  Anyway, once he's on the floor he manages to scoot himself up the floor.  He arches and kicks his feet and moves right off his play mat.  That alone is huge progress in our eyes.

Sleep Baby, Sleep

We are so thrilled to have Baby GL back home.  It's taken a few days to adjust to his schedule.  On Monday he went to see his Pediatrician. He was very impressed with how great his lungs sounded.  He lowered his sedative dosage as part of the weening process.  Today we'll be calling the Pediatrician to adjust dosage again.  It's a slow process to prevent withdrawals.  He still will continue getting his 2 daily Lovenox injections. We have an appointment set up for an ultrasound in a few weeks to check the blood clot.  If all looks clear we'll be able to get off the blood thinner.

So we've been playing around with Baby GL's feedings.  The first few nights he was home he was really restless, which made us restless because we wouldn't sleep.  He came home on the schedule he was on prior to going into the hospital.  We were able to tweak that a little bit.  He would get 2.5 oz of formula 4 times a day and then an overnight feeding by pump into his g-tube.  Well, the 2.5 oz was very easy for Baby GL to quickly consume so I bumped him up to 3 oz. He managed that with no problems.  His reflux seemed to really improve over these last few weeks which keeps him from vomiting.  So with the 3 oz he was getting less pumped overnight.  We still saw how restless he was so I adjusted a little more.  Instead of only getting 4 feedings by bottle we began feeding him all by bottle, which begins at 8am and finishes at 11pm.  The luxury of have a g-tube is that he can get a bolus feeding when he's sleeping so the final 11pm feeding is usually fed all through the g-tube.  The last couple nights we've been on this schedule, Baby GL has slept so peacefully and slept through the night again.  I can't say the doctors will agree with our methods, but I can see how much better Baby GL is.

The nurse came on Tuesday to check in since now we are back on her services.  He was weighed and we must be doing something right.  He was 11lbs 11oz and 23 inches.  He's really been gaining well which is great since he lost so much in the hospital.

Baby GL has really been showing us how big he is.  Only in this last week I've seen so many changes.  We were able to get a teaspoon of rice cereal in him by spoon, which he seemed to like so we'll continue working on that.  He is doing so much better lying on his tummy. He'll push up a little but will just be lazy most of the time and suck his thumb.  He seems to fall asleep anywhere now.  I could never get him to lay on my chest and fall asleep.  Now he seems to really love it, but only on Mommy, not Daddy.  This morning he fell asleep playing on his back under the play gym.  I think after everything that has happened he's just finally getting into his own.  He's happy and comfortable and I think he really knows the difference when he's home compared to being in the hospital.  

Coming home again.

What a week we've had.  So after Baby GL's freeing episodes he manage to come to a nearly full recover.  After getting put on CPAP we got the news that he may be able to try high flow.  That's fast progress because usually it's CPAP for a few days then high flow.  He was on CPAP maybe 24 hours and when we returned to the hospital we found him on only 1/2 liter of oxygen.  Turns out they tried him at 4 liters and his saturations were consistent at 100%.  By the afternoon, when we came to see him, he was down to .5 liters. That's almost home oxygen settings.  Huge recovery from being extubated 2 days prior.  By the next day he was on .25 liters which is his normal home oxygen settings.  He just impressed us with how quickly he recovered.

During this time getting off the higher amounts of oxygen there were some cultures drawn looking for any bacteria or viruses.  He had struck a fever a couple days so they were searching for a reason for it. Results came back with a bronchiolitis virus.  Not a common one that the nurses had heard of, but apparently a baby had been in recently with the same virus.  It's treated just like any other virus, with antibiotics.  The virus didn't seem to affect baby GL's attitude.  Later on they found MRSA which is another type of virus, one that is contagious so the staff had to wear their gloves and gowns every time they came in his room.

While intubated Baby GL was pretty heavily sedated.  With that came a journey of weening of the sedation.  It's a very slow process.  He would ween off one med, but change to another that was not quite as strong.  The nurses grade him on a scale watching the signs of withdrawal.  A couple things they watch for were his irritability, trembling limbs, and even sucking. The nurses took his obsession with pulling his oxygen cannula in his mouth as excessive sucking.  We had to reassure them that the cannula game is something we've played for months.  It can definitely get confused with excessive sucking.

So something we found out days after discover and treatment was that Baby GL had a perforated eardrum.  The nurse was briefing us about new meds including an ear drop when we found out. Surprise to us.  I guess they were able to get on top of it to treat it without major damage.  We found out later the virus he had could cause ear infections.  We just hope it won't mean he'll get ear infections regularly.

By Tuesday, Baby GL moved to the 8th floor.  He wasn't in need of the ICU any longer.  Great news, but for us, we prefer the ICU where he gets regular attention.  We knew, though, discharge must be close. In the move the hospital staff managed to leave behind the glass angel ornament Babcia (Grandma) gave him for Christmas.  Housekeeping didn't find it important when they came across it and tossed it in the trash.  The hospital was very nice about trying to replace it for us, but it was a lost cause.  There's always something that happens when we go to the hospital.

Some goals to meet before coming home were to get back to our regular feeding schedule.  Speech worked on his bottle feedings and even made an attempt with applesauce.  He did pretty well, typical first food issues, but we were given the go ahead to keep trying.  

Baby GL will come home getting daily Lovenox injections.  Something very familiar to me since I took that during my pregnancy.  While he had a picc line near his clavicle a blood clot developed so he needs the blood thinner to break it up.  I had to learn the injections with the nurse for us to get that checked off our discharge list.  He'll get those twice a day for a total of 6 weeks when they'll perform another ultrasound to look for the clot.  We also had to learn his other meds because he's still in his weening process from the sedation meds.

Well, after all that, Baby GL came home last night.  It was a wonderful feeling, but I could feel the anxiety creeping in.  We really want to keep him safe now and we worry that we're not doing enough to protect him from all the germs and illnesses floating around.  I don't know that we can keep him completely unexposed.  My husband was so happy to have him home he slept on the couch next to him in the bassinet.  He was awaken by the nurse coming by the check on Baby GL.  His weight has come down, 11lbs 3oz.  He looks very healthy, though.  

We've spent all today getting reacquainting with our care habits and his habits.  The biggest issue is keeping that cannula out of his mouth, an impossible task. We can see some of the withdrawal symptoms coming out so we are trying to be really on schedule with is sedation meds.  All week we've been listening to him cry very quietly with his very horse voice from being intubated.  Today he's showing improvement, his coos just get louder each time.  The scratchy cry is pretty cute, though.  Come Monday he'll be seeing the pediatrician to see about adjusting his sedation meds.  Hopefully he'll see improvement so we can get him off those meds.