Free at Last

Baby GL is calling the shots now.  He managed to flail his arms free of everything.  He flailed so much his iv fell out, it wasn't in use anyway.  He flailed the other arm too, so much that his arterial line moved it's way loose.  The nurses do a really do job at making sure these lines are secure, so I can say this was not an easy task for the average patient.  Good thing for him, though, because now he has his hands back. I don't know how they expected a 9 month old baby to stay strapped down.  When I went in to see him he was fully bundled in a blanket with the sand bags they use for positioning him all laying on and around him.   All I saw was his face, but he was very sweet and fast asleep.  The nurses told me that every once in a while when they looked in on him he would manage to get one arm free. That is his personality.  He was never much of a swaddling baby.  It was comforting to hear my Baby GL was back to his feisty self.  Aside from that I was given the news that if all goes well, he'll be extubated in the afternoon.

We've made progress.  Yesterday afternoon Baby GL was extubated, no more tube.  He was put on the CPAP, which he knows very well. He was very happy to get rid of that tube.  The nurses told me he was in relief and immediately showed it after extubation.  After extubation they did an x-ray to see how his lungs were doing. Unfortunately, the right side wasn't looking good.  He had a breathing treatment with Albuterol around that point and he seemed to cough up a lot of junk from his lungs.  With his lungs still looking ill the doctors wanted to try that NAVA system with the CPAP.  It is a new technique that hasn't been used much yet, but it was successful for him while intubated.  When the doctor came in to check on him he was surprised at how comfortable and peaceful he was so they decided to hold off on any changes until later in the evening, after another breathing treatment and x-ray.  I was left sitting on the edge of my seat until after 8pm with the decision.

Come later in the evening Baby GL did manage to self-repair his lungs with the breathing treatment and rest.  His x-ray looked much improved so the doctors held off making any changes to his current oxygen settings.  That gave me relief.  There was the chance that if his lungs still weren't improving they were going to have to re-intubate which would set him back tremendously.  Do you see how Baby GL loves to live on the edge?!

I'm looking forward to see how our New Year will progress.  It's hard to image Baby GL as a toddler with all the fight he's given us as a baby. 

New Ventilator

Baby GL is still having a long nap, however, he has moments when he wakes up to make the nurses dance for him.  As of Sunday we had success removing the paralytic meds.  Baby GL is still sedated on a few different meds. He continues to get a fentanyl drip for pain and a couple others meds that keep him settled and calm. Yesterday we were able to come down on the dosage of sedatives, but when he has moments of discomfort and begins flailing his arms the nurse do have to bump a little extra to calm him.  It breaks our hearts to see him open his eyes that little bit.  You don't know if it's pain or drowsiness.  I just want him to sleep so I don't have to wonder if he's in discomfort. When that flailing begins the nurses have to try tying his arms down.  He has an arterial line still in one wrist and an iv in the other.  We gave him a pacifier to try to comfort him but I think it made it worse.  Baby GL likes to hold his pacifier now and to put a thumb or finger in with the pacifier.  He couldn't do that so he became more upset.  He even had that thumb stuck out and ready to go.

Something the doctors have been mulling over the last few days was if they should try a new breathing system call NAVA.  It works with the patient more. It takes an NG tube (through the nose), and a sensor, of sorts, is placed by his diaphragm.  The machine predicts the next breath so that it knows how much assistance to give, if any.  The machine allows Baby GL to do more of the breathing on his own.  The doctors decided yesterday was a good day to get him on it.  Turns out, he loves it. He has been calmer and on less oxygen since being on the NAVA ventilator.  He is still intubated, but hopefully this will move him faster towards extubation.

Due to the paralytics and sedatives the nurses have been working on getting Baby GL's gut working.  Those meds cause ours systems to slow down so it's harder to have a bowel movement.  He has had glycerin, some other drug, as well as a couple enemas.  With his system on slow motion his feedings have been held.  He was up to normal feedings with his formula a couple days ago.  I think its been a day or so he's just been on iv fluids to keep him nourished until they can start that formula again.   The problem with the formula was he wasn't digesting it well.

At this point we are just waiting on him.  His lungs are looking better each day.  Now on the NAVA ventilator he won't be getting the IPV breathing treatments that seemed to really clear up his lungs.  The only thing we can do is wait until he's ready.  My guess is he'll still be in the hospital another week if not longer.  It just means I'll be spending New Year's on the very uncomfortable hospital pull out.  However, I get to spend it with my baby.

Christmas Smiles

Baby GL is having a very long nap.  Once he wakes from all this I'm sure he'll keep us awake for days.  His condition is improving.  All of his tests came back negative, which means no RSV.  The doctor also says it's not pneumonia.  That's wonderful news for us because that means he's not aspirating and we won't need to deal with GI during this visit. Even though he doesn't have either of these severe illnesses he is still dealing with a nasty bug.  His lungs are just not strong enough to handle any kind of respiratory bug.  We hope once we're past flu season we wont have to worry as much.

Yesterday the doctors made an attempt to stop the paralytic meds. As I and my husband suspected, it didn't go well.  A sedative isn't strong enough for our stubborn Baby GL.  He never enjoyed intubation so we expected him to fight, which he did.  As a result he was put back on the paralytic.  He just needs to recover because when he fights he clamps down and can't get the great airflow he needs in his lungs.  They may try again removing the paralytic tomorrow.

Today the RT removed the ion meds from his breathing tube.  He's been weened over the last day.  The nurses also switched over his feedings and meds.  He's been on TPN IV nutrition and only small amounts of formula.  He's officially off the TPN now and moving to full formula feedings via g-tube only.  He's been getting an Epinephrine drip for the last couple days also they are weening.  The last thing they removed was the foley catheter.  Now they just weigh his diapers as they've done during past visits.  I think until tomorrow that's all the changes.

I stayed with Baby GL last night so that he wouldn't be alone in Christmas.  About 4am the nurses and RT came in for one of his breathing treatments, as well as another x-ray.  I had to leave the room for that.  Before I left I was pleasantly surprised that Santa didn't forget Baby GL.  He had some wonderful gifts at the foot of his crib waiting for him.  He got a Mr. Bump toy which brings back so many memories for me.  I loved the whole Mr. Men series and it just brought a smile to my face.  It was so sweet that he was remembered, even in the ICU.  He even had a visit from Santa on Christmas Eve morning.  One of the doctors grows out his beard and dresses up for all the kids.  It really warms a families heart to know the kids are being so well taken care of.

The most information we have for Baby GL coming home is that they are looking at Friday to be their goal for extubation.  I'm hoping it will be earlier.  It's really up to him, though.  Baby GL has always decided his schedule.  We had hopes to have him home sooner than a couple weeks but it doesn't look like that may happen.  He's in a safe, protective place for making him completely healthy so we can complain.  We'll have some time now to sanitize our home and make it very clean for when he does finally come home again. 

Santa's sleigh? Ambulance ride

There is a point when you look into your child's eyes and you feel like time has slowed for just a moment.  It's in that moment today that I felt fear overwhelm me and my adrenaline cruise control came on.  This morning I made a last minute appointment to see the pediatrician about a cough and heavy breathing that Baby GL has been having for about a day.  The cough has been an issue we've been dealing with on and off for weeks now, but yesterday it got progressively worse. We've had a few nights of little sleep due to his discomfort.  I feared that we were going to have an issue with putting him in the car seat since the last time we had breathing issues the car seat just accelerated the problem.  My feeling was correct and I watched as Baby GL turned dusky, eyes wide open, just staring at me.  He couldn't cry, not even gasp for a breath.  That was a moment I will never get out of my head. It only took a second for me to grab my phone and just dial the 3 numbers a parent dreads.

The moment I took Baby GL out of the car seat and laid him on the couch he was able to breath and cough.  As I was speaking to the responder on the phone he was kind of crying a little, but then soothing himself with sucking on his fingers.  It was only minutes and we had 3 EMTs in our living room.  There decision was made quick to just scoop him up and take him to the ambulance.  We decided Children's hospital was the best place to take him since he was there just months ago being treated for pneumonia.

The whole ride in I could hear him cry.  It was actually comforting because I knew he was breathing...and fighting with the EMTs.  Once at the hospital he was prepared with an oxygen bag, monitors, and a whole slew of doctors and nursing staff.  Deja vu, I think we've been here before.

One thing they did right away was measure his blood gas, which measures how much CO2 was in his blood.  His normal range is about 50-60.  Today, it was 100.  Intubation was brought up at that point. Since I've seen him intubated already so many times the doctors made the attempt to try a CPAP and see where his gases go.  It wasn't a successful try.  He fought the RT who tried to get the mask put on.  He was all fists in there.  The nurse nicknamed him "ALI".  We discussed sedation, but seeing his drop in saturations when he got excited the best decision was just to intubate.

After being sedated they were successful in intubating Baby GL.  The one thing about intubation is that it will give him a rest.  His little lungs have been working overtime.  After intubation in the ER they finally has a room ready for him in the Pediatric ICU.  Up there he was undergoing more tests and a pic line needed to be put in.  He had a pic line, an arterial line and a foli (? not sure about the spelling).  It's basically a line that I'm guessing goes to the urethra because it's meant to collect his urine to measure his output.  He needed restraints on his arms because of all the lines.

Since we were continuously being kicked out we took that as our cue to leave for a bit.  After a couple hours, now into the the early evening, the doctor called me back with an update.  There was a concern about Baby GL having some spasms in his arms so they wanted a head CT to check if he possibly had a seizure.  Then he continued to explain that since he does have a whole in his heart and his lung are already so damaged he his as higher risk for pulmonary hypertension.  Because of that he was being put on an type of inhaled ion med.  It was connected right to his breathing tube.

When we finally arrived back at the hospital there was still a lot going on.  The CT came out fine, no seizure.  However, he was dropping his heart rate which they are still going back to the idea of the pulmonary hypertension.  He was connected to the ion drug and had another x-ray to make sure his tube was correctly placed in his airway.  Due to our little Baby GL being such a fighter he needed to be not only sedated but given a paralytic for the time being until he can relax in his new settings.  The nice thing about the paralytic is that he will not remember any of this.

Most likely we will be spending Baby GL's first Christmas on the fifth floor of Children's hospital.  He'll be in good company, I think.  There are some other babies there.  Tis the season for RSV and other respiratory junk going around.  We just hope he won't need to be in there woo long. 

Growing

We are nearly to Baby GL's first Christmas.  Prior to Christmas coming, Baby GL had another synergist shot last week.  The nurse comes to give him his shot.  That one is very important to protect him from RSV which preemies are at higher risk at getting.  He'll get the shot monthly through the winter.  I can't say it's a pleasant visit from Gianluca.  He's never crazy about the band aid on his leg.

His weight during the visit was 11lbs 5oz, 23 inches.  He must have hit a small growth spurt because the time between 21-23 inches went very quickly.  I'm putting away more clothing now because there's no room to stretch his legs.  I find a lot of his clothing to make him feel better physically, because so many are huge through the tummy, but very short in the length.  For Baby GL, who has shorter legs and arms, it works towards his advantage.  He may not realize the sizing issues now, but I can and he will see his pictures when he's older.

Our day to day is pretty much the same, lately.  We've been trying to work more on his exercising.  We haven't had a visit from therapy in the last 3 weeks so we've been doing the exercises we were taught and extra we feel he'll love and benefit from.  Most of the time we're working on getting him to laugh.  We get goofy and he gets the "you're strange" look on his face.  However, we do crack a giggle sometimes. He seems to have a better mood in the morning so we'll see more smiles and giggles then.

We've been struggling with our sleep the last few nights.  Baby GL will begin screaming without even waking up.  Usually we can fix it with the pacifier, but it won't always last long.  It's like he knows when you get in bed and lay down because that's the point he'll explode.  This morning it occurred to me why he may be having some issues.  In an attempt to be a "health promoting" Mommy and get in the band wagon of brown rice I tried it on Baby GL. Apparently, there's a group trying to get parents off the habit of feeding white rice as the 1st food to babies.  I agree with the logic, but i think it's hard for Baby GL to digest which may be the reason for the sudden change in his sleep habits. As much as I would love to promote a health start to my son's diet I can't support his screams of pain.  In the Ayurvedic diet (Indian), brown rice is actually not great for easy digestion.  I will go back to the plain single grain rice for him and we will see if it makes the difference.  I hate to experiment with my son's meals but I just want to find what makes him most comfortable and promotes good growth.

Unfortunately, Baby GL is a little too young yet to take part in the holiday meal and many festivities of the season.  I get his attention when I sing him Christmas carols.  Again, I get that look of uncertainty from him.  I like to think he gets that it's a holiday.  He definitely knows it cold outside, because he gets bundled so tightly when we go out. Maybe no sledding this winter. 

No More Nurse

Snuggled and sleeping in my arms while I write.  Baby GL is doing great. We are snowed in for the day so it's perfect for a little lovin' time.  He is getting so clever each day.  He loves to pull his oxygen cannula down from his nose and suck on it in his mouth.  I'm constantly re-taping the cannula in his nose.  He's also getting closer to rolling. He kind of rolls up a little and drops to one side, but then straightens out to roll back to flat. He'll go back and forth while pulling on his toys on his play mat.  

This week Baby GL finally arrived at 11lbs, 22 inches.  We're hoping to get better results with the new feeding schedule.  His reflux seems to be improving.  He still will have some vomiting episodes.  This morning during his morning meal he vomited and looked at me giggling.  He doesn't giggle much so I just wonder what he was thinking at that moment.  Maybe "ha ha Mommy has to clean me up!"  

As we've adjusted to the new feeding schedule, we've actually made some changes.  Our hopes is to get off the feeding tube.  With a 2oz feeding, Baby GL does really well as finishing without the need to use the tube.  What we decided to try was bumping him up to 2.5oz by bottle each feeding, which would be 2oz less we've need to feed via pump overnight.  By doing that we may be able to move to one extra bottle feeding and even less time by pump.  It's a process and it takes time to make the adjustments.  Patience is not always on our side. We're trusting we know what we're doing because now we've been discharged from our weekly nurse visits.  She'll now only come once a month to give Baby GL his synergist shot to prevent RSV, which is a respiratory illness that affects preemies.   He'll still have his therapy visits so at least we're not completely on our own.

Each day is such a blessing for us. Now moving into the holiday season we are having so much fun with Baby GL.  I hope that we can get him out in the snow one of these days, but I'm not going to push it.  We'll just continue to spend our time snuggling and playing. 

9 Months Old

Officially 9 months old already.  I can't believe where the time has gone.  Three months ago we were still in the hospital.  In these last three months we've had a few scares, but Baby GL has battled everything with a smile on his face.  His most recent weight is 10lbs 12oz and still around 21 inches.
This week we visited the GI (Gastroenterology) clinic.  It was a good visit and one that opened our eyes a bit.  I went in concerned they were going to make us put the G/J tube back in with all the problems we've had with reflux and vomiting.  The GI doctor is most concerned about his weight. He made me feel better about the reflux.  I knew it was a typical problem in babies, but I didn't realize how common it was.  The recommendation to add rice cereal has improved his reflux greatly.  It's actually helped him sleep more soundly at night, too.  He's sleeping so well we can start using the Nap Nanny for play time.

One thing I've been struggling with is Baby GL's feedings. He hasn't been gaining weight as well as he should be.  Because of that I've not known how to feed him.  During the day he hasn't wanted to take a bottle very well.  I think he's had a stuffy nose.  Without a good amount through the bottle I'm left to feed him more at night, which results in him getting full.  At the GI clinic I was able to speak with dietitian who put together a feeding plan for us.  I didn't realize how wonderful it was to have that help. We used to have a speech therapist coming to the house to work with him but she just stopped coming.

The new feeding plan is 4 feedings during the day, 20z each. If after 15 minutes Baby GL doesn't finish the 2oz then we bolus the remainder into his g-tube.  Over a 9 hour period overnight we will feed him with the pump a little over 1oz an hour.  It amounts to 18.5oz a day. We still add the 2ml of oil and the rice cereal, also.  It's helped really push us to stay on schedule.  I posted the feeding schedule on the cabinet so there's no excuses from my husband or myself as to why a feeding didn't happen.  So far we've been pretty successful.  We'll hope for some good growth this week.

Aside from GI we did go to the pediatrician.  Baby GL was due for his second Hep B shot and flu shot.  He immediately started screaming with each shot.  He made it through the evening without a fever, which was very good.  However, he was a little restless leaving restless as well.

The pediatrician is somewhat concerned about his growth as it's charting.  He recommended we see a genetics counselor to maybe see if something genetically is happening.  We actually already had a time set up for July in our plan of specialist appointments. 

Baby GL is a small baby.  As much as we want him to grow, it's been nice to have a small baby for a little while.  He spent 6 months in the hospital, but we still brought home a newborn.  Baby GL's corrected age is just about 6 months, but he still in the tail end of newborn clothes.  I think we'll come to a point where he'll grow so quickly that he may skip a size.  We'll be hoping for the days when he was small.