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.

Eat, Baby, Eat

It's been a huge challenge, how do we feed Baby GL.  From the beginning we've battled how to get the proper nutrition for Baby GL.  He wasn't good at taking a bottle at the beginning so we had to skip even working much on it for quite some time.  Now, when we thought we were through all our battles we are coming back to needing to skip it again. Baby GL just doesn't want to take enough to thrive without a g-tube feeding.  We've had even more issues with his reflux so when we do get a good feeding it just comes right back up.  The challenges are never ending, so it seems.

The newest recommendation by the pediatrician is to add some rice cereal to the formula to thicken it up.  Well, that just added more challenges.  It was so thick it was difficult to get through the bottle. The end result was a screaming, hungry child. I finally gave up and brought out the feeding pump and fed him the rest of the bottle though the tube.

We need to get though these challenges in order for Baby GL to grow. His weight today was 10lbs 12oz, which is only a 4oz gain in a week. We hope for an ounce a day and with the vomiting and not eating we are hitting a brick wall in progression.

Aside from all the feeding challenges, Baby GL is doing great.  There's been a concern about his reoccurring cough.  We had a chest x-ray done just to rule out pneumonia and we did.  His lungs look pretty good, actually.  We have been told to just keep doing what we're doing. I have a feeling the reflux is playing a role in the cough.

Thanksgiving went very well.  No turkey for Baby GL, not even his sweet potato.  With the battling we've had with feedings I've been too distracted to remember trying solid foods again.  I don't think he's missed it too much.  As long as he has something to chew on he's pretty satisfied.  We're ready for that first tooth anytime now.

Our day to day now is to just get him fed and keep him entertained. He still loves his bouncer and I got him a large FAO Schwartz plush lion that he just adores.  He loves to look at it and play with it's face.  It seems to keep his attention well.  I think we're getting more laughs from Baby GL now, too.  He's full of smiles but it's that belly jiggling laugh I'm waiting for.    

Solid Food

We have officially recycled the milk storage containers in the freezer by using them for baby food.  Baby GL has been on mostly all formula now for about a week and a half.  We started that when we opened the last milk from the freezer.  I do nurse a little bit, but he goes through stages of wanting to nurse and times he's just too impatient to work for it.  It is a relief not having to remember the 3 hour schedule I was on. We made it over 8 months so I feel good about the nutrition for Baby GL.  Mixing formula has actually made it easier to prepare meals for him.  Up until now it's either been waiting for milk to thaw or quick running to the pump.  I think if Baby GL didn't need the extra calories or nursed without the necessity of a shield to latch on we may have been able to go longer.  I will keep nursing once or twice a day just to give him a transition period.  I think it's more for myself that it's difficult to let go.

Baby GL seems to have recovered from whatever he may have caught last week.  Every once in a while he has a cough, but the Albuterol clears it up pretty effectively.  Even with a little cough and illness Baby GL kept up his smile and cheerful glow.

Baby GL's new favorite toy is his bouncer.  We have officially retired the swing.  That swing was with him in the NICU so I guess he's had his fill.  He wants to be more active now. Lots of kicking and grabbing. In the swing he would jump so much he nearly jump over the edge. We've concluded he must be teething, too.  With everything he puts in his hand it will get to his mouth.  Even his pacifier is a toy.  He chews on it more than sucking.  He'll pull it out swing it around and manages to get it back to his mouth.  I bought him a ball with textured spikes to get him feeling and he will grab it with both hands and lift it to his lips. There's nothing that won't go to his mouth.  His cousin gets a little jealous of Baby GL in the bouncer.  He even tried to get in with him which is never a success.  He plays with all the toys on it and will snuggle in next to Baby GL a little.  It's very tender to watch.

With Baby GL teething he's lacking an appetite.  It's been a struggle to get him to take much by bottle.  The g-tube has been getting a lot of use just to make sure he gets what he needs each day.  Baby GL uses the bottle nipple again as a teething toy.  He's figured out he can bite down on it and he'll pierces his lips around it.  The problem is that he lets the milk dribble down his chin instead of drinking it.

He doesn't want to take a bottle, but he does want to chew on things so the only solution was to try some solid food.  Yesterday was a huge milestone.  I prepared some sweet potato and watered it down with formula.  I only put small dots on his spoon to try it.  His first few tastes resulted in a curled lip and a look of disgust.  After a few tries he seemed to enjoy a little something in his mouth.  He even managed to give me a few good swallows.  I didn't get much in, maybe a quarter of a teaspoon but it was a good start.  I tried again today and I got pretty much the same response aside from the curled lip.  He helps the food down with a finger or four.  What I found to be more effective was putting some food onto a teething brush so while he got a little gum massage he sucked the potato off.

We are so excited to go into the holiday season with Baby GL.  We are making so many memories already and we feels so fulfilled by him.
 

New tube, new cough

So we had a successful transition to the g-tube last week.  The removal of the G/J-tube was pretty easy and the new mic-key button went in quickly.  We were able to have it done right in clinic, no need for radiology like we needed to replace the G/J.  The one shocker is that if the mic-key button breaks or falls out, more like is pulled out, I will be the one to replace it. Not sure how comfortable I am with that, but when or if that time comes I will have to deal with it.  It's actually quite a small device.  Maybe only a couple inches if that.  It has a balloon as the other devices have that just gets filled with water once inserted and it stays in place. With the button we are able to disconnect the feeding tube so that all that he has throughout the day is this small 1/2 inch diameter button that sticks out about 1/4 off the skin.  It is much easier to take care of compared to what we've had up until now.

The weekend went pretty smooth aside from a worsening cough.  I started doubting my decision to change his tube because he was vomiting a lot of his milk.. At times it was like the occasional spit up.  I did have the nurse come on Monday to get him checked because the vomiting is when we worry about aspirating.

The nurse actually said he sounded pretty good in his lungs.   She instructed us to do his Albuterol treatments every four hours to help open his lungs. The hope was to break up whatever was there and reduce his cough. The great news was that even after his issues he managed to gain weight, bumping him to double digits, 10lbs 1oz, 21 inches.  What a relief to see the scale go up.

Unfortunately, we continued to have issues with that cough.  He wasn't keeping much milk down at this point.  By Wednesday we were calling the nurse.  We were going through towels and many changes of soiled clothes.  We ended up getting him into his pediatrician to take a look at him.  The nurse worried it could be pneumonia again.  I can't help but laugh a little at every new event that happens because it feels like we'll never move away from these worries and problems.

Well, the pediatrician had a better reaction to Baby GL's symptoms. He tested his oxygen saturations to see if he was getting enough.  The recommendation was to bump him up to .5 liter from his .25 liter just to get him past this.  We were to continue with 4 hour Albuterol treatments, and he put him on a cycle of both Amoxicillin and Prednisone.  The Prednisone worried me only because I know how it affected me and couldn't image how it would affect a small infant.

We got our answer that night when Baby GL awoke at 12 midnight and never went back to sleep.  We rocked, we soothed but nothing calmed him.  He had a fever, about 101, so we were trying to bring that down. His hands were like fire. We ended up, by about 6am, giving him a bath.  It seemed to help, and he did sleep, but only a couple hours, maybe.  By late morning his fever spiked 102 so I called the nurse and the pediatrician.  The Pediatrician's recommendation was to ride it out. Between the two meds they would resolve whatever was happening, but sometimes they take 24 hours to kick in.  The nurse came to check on him and was still worried as she was the day prior.  However, we were told to wait.  I did ask about giving Baby GL Pedialyte.  When I fed him he took a bottle like he had never been fed before.  Those signs showed me he was maybe dehydrated.

As the day progressed he did take a couple ounces of Pedialyte and his fever came down.  His cold hands returned, what a relief to feel those clammy, cold, saliva-soaked hands.  Even through the fever Baby GL was such a trooper.  He was smiling and cooing as he had before. I noticed a lot of relief when he finally got a good long nap.

By Yesterday Baby GL was pretty much back to normal.  No more fever, no more vomiting, just happy smiley baby.  PT even came on and he showed off as he does like he never had been sick.  We tried him in his bouncy saucer this time.  He's still small for it but with a pillow under his feet and a blanket behind for a small support he did great. Baby GL actually liked it.  We didn't want to prop him too much because our goal is to strengthen his core and neck muscles.  He's being doing much better at supporting his head.  So this is our new toy. Between the bumbo and bouncer he'll be busy. I think his favorite is just lying on his back on his play mat. He can't get enough of his lion.

I think one of my favorite moments happened this morning.  Baby GL welcomed us with his gurgly "Good Morning" talk.  He wakes with conversation, which is much more pleasant than cries and screams.  I spent 30 minutes this morning listening to his stories.  He is so articulate that you can almost imagine the words he's trying to make. There's a quiet, interested voice during conversation, then the occasional excited squeal, followed by more soothing coos.  Even his tongue and mouth action changes as if there are words developing there.  Maybe other parents don't think those coos and gurgles are as meaningful.  Baby GL continues to exceed our expectations of how quickly he'll progress that every moment is so meaningful and memorable.  One thing I forgot to add was that when the nurse came back on Wednesday she weighed him again, 10lbs 4oz.  

Halloween Scares

I never should have called Baby GL boring.  He made up for it this week. We have been battling how to change his feedings.  If it was up to the doctors Baby GL would be on a tube feeding for another 6 months or more.  Well, as the parents we are woken up midway through the night by our child screaming.  His schedule has been nursing and oral feeds during the day then tube feedings into the jejunum part of the tube which directs the milk into the intestine.  It completely bypasses the stomach leaving him feeling very empty and hungry.  After all day eating he gets hungry at night even though he's get a full feed.  

To try and combat this I decided to try feeding him into the gastric part of the tube Friday night.  It would be just as he had all his time in the hospital, everything going to his stomach, just in smaller amounts over a longer period of time.  It was a very successful weekend doing the feeds this way.  He went three nights without any major issues.  He still deals with the gas and I think he gets full towards the morning without having a break in the feedings, but otherwise I feel he felt better.

One thing we started noticing more of was a leak in the tube which was a whole another issue.  I've noticed in the past that the jejunum port doesn't have a really tight seal so I would find yellow stains on Baby GL's clothing.  Especially over the weekend, with not using it, I noticed it even more.  It's disturbing because you wonder what is it that is coming through the tube.  With his gastric feeds I did notice a little milk coming through the jejunum, but still with a yellow substance, too. I ended up taping the port closed to prevent the leaks which could only be a temporary fix.

The nurse came on Monday as she does weekly.  I told her about the tube so she was able to contact the GI clinic about getting it looked at. I needed to go through Speech and the doctor that did his swallow study before I got the okay that I was doing things correctly.  As a result they agreed to remove the G/J-tube and replace it with a G-tube button like he had for about a week in his second visit in the hospital. It will be such a relief to do away with the G/J tube.  It's awkward and has caused us more issues.  I think it's slowed his progression towards full oral feeds.   

With the nurses visit I was relieved to find I did something right in his feeds because he gained 8 oz.  Now he weighs 9lbs 14oz and 21 inches.  I've tried to be very careful in measuring the amount of food he gets as well as trying to increase his amounts in oral feeds.  The one thing I'm finding is that my freezer is nearly bare of milk.  I'm not sure I feel ready giving him just formula, but I think I will be able to continue nursing and just formula as the supplement.

So after all that we still had more issues last night.  Around 2:30am I woke to his feeding pump alarm telling me his food was empty.  When I went to take it off  everything around it was wet. The gastric port now is leaking.  What a headache.  At about 6am I tried reconnecting his feeding and I couldn't get a tight connection.  Even with tape and a clamp it leaked and left me doing another load of laundry.  Because of the leak Baby GL didn't get his full amount of feeds for the night and I'm not sure what to do to get through tonight.  My husband and I discussed a trial run with overnight oral feeds.  We may be forced to try it tonight. 

Well, after all that, Baby GL had his first Halloween.  We didn't go trick-or-treating, but we did dress up.  I was so excited to find a giraffe headband so he wore that a few times last.  Saturday, while sitting with his uncle he had his Trick -o- Treat tee.  My sister and I escaped to a haunted house for a night out without kids.  My sister and nephew dressed up to trick-or-treat on Sunday. They went as mama and baby bumble bees.  Baby GL wore the pumpkin his cousin wore his first Halloween.  I wasn't sure it would fit because it's a newborn size. He's almost 8 months and not quite 10lbs, but we are almost to the next set of clothing.

So now we are looking forward to tomorrow.  I worry a little if we're making the right decision switching him.  Last night with a bottle Baby GL started coughing and his whole bottle came up on me.  That's when it's scary because it's on the way up you worry about aspirating. He seems to be fine but our nurse will be coming to check him out today just to make sure his lungs are clear.

Aside from all our drama, my husband and I commented on Baby GL's voice. In the NICU we worried if his vocals would recover from his repeated intubations.  Well, we have be reassured of his recovery, loud and even louder.  He loves talking.  He gets louder everyday and his vocalizations are changing.  It's incredible to witness those changes.    

No appointment

We've had a pretty calm couple weeks, lately.  The only crazy thing was that I frantically got Baby GL together in only a matter of minutes on Friday to get him to an appointment that was a mistake.  It was an appointment I had rescheduled but it was still on the print out I had from the clinics.  It was an 8:15am appointment so when I awoke at 7:15am I remembered, but also doubted myself.  Oh, well.  There will be these moments of craziness and absentmindedness that we will have to get comfortable with.

Aside from that mishap things have been going very well.  We are so impressed by Baby GL and his progression.   OT and PT continue to work with him. He still needs a lot of work on his mobility but there had been much improvements.  I use the Bumbo chair to practice his sitting up and we hold him up on our shoulder most of the time to get his head control.  His tracking with his eyes has greatly improved.  He's even looking for Daddy now, which, usually it was just me.  I can't complain about that.  His morning ritual is time on his play mat playing with his toys.  He grabs them and brings them to his mouth and talks to them.  Its his own morning workout.

So we've been working more and more on his feedings by bottle and nursing.  With that his diet is as caloric.  As a result his weight this week is the same as it was the prior week.  No weight gain, however, no weight loss.  He's also still 20 inches but that's not going to change quickly.  The goal is an ounce a day so now he's a little behind.  I am working on tracking his feedings better so I know how much to set up for his overnight G/J-tube feeds.  Hopefully we'll see a weight gain this week.  Judging by his clothes you would think he gained a lot last week.  

I think Baby GL's favorite pastime now is laying on our shoulder sucking his whole fist.  He gets nearly the whole thing in his mouth now.  He's been trying two at a time now, too.  Sometimes he switches it out with one hand and a pacifier.  Anything to fill his mouth until he eats next.  

It's been such a turn around watching him eat.  He went from choking up with every suck to eating so quickly he wants more.  I think back just a couple months and can't believe the progress we've made.  We wondered how long we'd need to feed him through the tube and it was hard to see an end in sight.  Now we see him taking solid foods within a couple months.  My anticipation for those moments get me so excited every morning when I wake up. 

I want hear stories from other mothers.  I am sure that I'm not the only one going through these daily routines.  Whenever I go to a appointment I meet other mothers with similar issues.  One woman I met had a son that was born at 23 weeks, 1lb 4oz.  He had cataract surgery at the age of 2 1/2.  He a very feisty little boy, but you look at him and would never know anything was wrong.  I really admire those mothers for all the wonderful work they're doing.

Bumbo chair - Wednesday, October 20, 2010

Baby in his Tiny Gdiaper

I made the comment to the nurse the other day that I'm running out of things to share about Baby GL.  His life has gotten pretty normal, which is wonderful news, of course.  We aren't running out everyday to catch doctor's appointments.  We actually have one this week on Friday.  It's a flu clinic, which, I honestly couldn't tell you what the doctor will do at the appointment.  Other than that one we just have the regular visits from the nurse, OT, Speech and PT.  


Last week we began nursing during the day in place of me pumping and Baby GL getting the continuous feeds.  Speech recommended I journal when we nurse to get an idea of home much he's taking.  With nursing he just gets straight milk.  On his continuous feed I fortify the milk to with formula that comes out as 27 extra calories.  I also add vegetable oil to his feeds.  We wanted to make sure he still was gaining that ounce a day even without the fortifying and extra oil.


The nurse came on Monday to weigh him as she does weekly.  The great news is that he gaining exactly 7ozs from Monday to Monday, 9lbs 6oz..  She gave me the go ahead to keep doing what I've been doing.  It changes a lot in scheduling out his meds, but it's nice not to have to set up the pump for his continuous feeds.  We nurse every 3 hours or so and then come evening, about 9pm, he'll go onto the feeds at a rate of 46ml per hour.  I usually run it between 8-10 hours.  


Aside from gaining weight, OT and PT seem to be pleased.  Our goal is to continue working on his mobility.  We even pulled out the Bumbo chair today.  PT wants me to give it a try to stretch out his hamstrings and get him to tones those torso muscles to sit up.  He's so cute it in, but it only lasts a few minutes before he gets upset.  I'm hoping he'll make progress in relaxing those tight muscles all throughout his body.  We do our daily baby yoga twisting and stretching.  At least he enjoys that.  

No eye surgery - Saturday, October 16, 2010

Baby GL has been doing great this week.  We've made some changes to his feedings.  Instead of trying to get in a few hours of continuous feeds during the day we are nursing and bottle feeding and leaving the continuous feeds to overnights when he sleeps. The bottle doesn't go very well.  He is so eager for it that he chokes up on the milk once he figures out it's not his pacifier.  Even then he gets too excited.  When you take the bottle away he screams, but then he's too worked up to get control.  For the most part I nurse him.  He does a great job nursing.  We have been just watching how long he nurses and he goes for an easy 30 minutes, which is how long our speech therapist recommended.  He does seem to fall asleep before 30 minutes in up sometimes.  

Baby GL's weight as of Monday was 8lbs 15ozs.  We are probably over 9lbs by now.  He is really filling out.  His cheeks are the fullest I've ever seen them.  

Our only appointment this week was his eye exam on Thursday.  We finally reached the point the doctor was looking for.  He will not need laser surgery and we actually don't need to go back for 6 months. Most of his appointments are spread out now into the spring which gives us a little break.  It also means he's doing great.  

I think our goals are to work on his oxygen, which is nothing we can really help.  He'll get to that point as he grows.  We are hoping with the increased oral feeds we could get rid of the G/J- tube in a couple months.  The biggest thing we're working on is his tight muscles. We've gotten some exercises to work on stretching him out especially through the legs and relaxing his shoulders.  We basically do our own baby yoga at home.  He really enjoys it, surprisingly.  He lets me stretch his legs up towards his head, which babies should be able to touch their feet pretty easily.  I also do gentle twists in his torso.  That has the added bonus of helping his release some gas.  I was working on his twists yesterday to help him have a bowel movement.  He isn't quite regular, which is a slight concern.  A little glycerin and we can get things moving.  However, we don't want to have to keep using the glycerin.  

We work on tummy time, too, when we do his exercises.  He's not as thrilled with tummy time, but he's getting better.  He loves being on his play mat playing with the toys that hang above.  His sight, I think, has much improved because he really locks on to different shapes and colors.  He'll look around just for anything interesting to look at.  The tv is a big one for him.  He doesn't care what's on.  Just the lights and movement gets him watching.

Today I stocked up at the farmer's market on squash and sweet potato. I'm looking forward to starting spoon feeds with Baby GL.  I'm thinking by December he'll be 6 months, corrected age, and we'll be able to give it a try.  

Baby GL is growing so quickly now.  It's amazing to compare this time with the time we had with him in the hospital.  It's definitely more pleasant now having him home learning his quirks and behaviors and how they change.  I think he realizes he's home, too.  He looks for us and knows we'll come running to his cries and coos.  So young and already outsmarting us. 

Busy with doctors - Friday, October 8, 2010

It has been a pretty busy couple of weeks.  Last week we were at Children's Hospital 3 days.  Monday was his eye exam, still on the edge of needed laser eye surgery.  We'll be back in 2 weeks.  Tuesday we had a nurse visit at home, which is a pretty easy visit.  It's nice not to have to bundle him up to take him for weekly visits to a clinic.  Wednesday was our longest day. In the morning we visited the Neonatal Clinic, or so I think that's what it was called.  There he gets checked out for how far along his growth is, which on the chart he's about the average size of a 2 week old.  She checked his eyes, which preemies have issue with their nerves so Baby GL tends to look back and forth a lot.  He will lock on something but his eyes seem a little "loose" yet.  We'll go back on a few months for a hearing test and some other milestone check-ups.  After that appointment we had to have some labs done for his Endocrine appointment the following week. He wasn't thrilled to have blood drawn from his arm.  However, that's the first time I've seen him give blood like a big boy. We continued our day to the ENT clinic where the doctor stuck something in Baby GL's ear, nose and throat. Everything looks good, though.  That was the first time being seen since he had the cysts removed from his throat.  We won't need to go back for 6 months to that clinic.  We spent about 6 hours at Children's that day.

We continued our week with a visit from OT in our home Thursday.  We had to skip speech this week because we were too busy Wednesday for her to come.  OT has been impressed with Baby GL.  She's noticed so much improvement in his movements.  He talks and coos, grabs for things and follows objects and people with his eyes much better than he had prior to his second hospital visit.  

By Friday we were in the Pulmonary clinic. That was a great visit, actually. We did a trial of his breathing without oxygen to see his saturations. Unfortunately, his saturations were not where they should be so he will continue with the oxygen.  Off oxygen they want to see upper 90s-100% oxygen saturation.  He was more in the lower 90's so he's close.  The one great news was that we were able to do away with the apnea monitor.  He hasn't been having any apnea episodes so the monitor was pretty quiet. Every so often he would set of the low heart rate, but it was usually when he was in a heavy cry.  He tends to hold his breath as does every other child when they get terribly upset.  It feels freeing to get rid of one thing from him.  Now he really only has the oxygen so he's much more mobile. Less to get tangled up in.

Later on that Friday we had our 6 month visit to the pediatrician.  Even though he was towards the end of his 6th month it still worked out for his immunizations.  Baby GL did get his 6 month immunizations, skipping the Hep B so that we could give him his first flu shot.  He'll have a second in a couple months.  The poor little man had 3 shots total, but the nurse gave him sparkly band aids. They were so shiny the his 1 yr old cousin had to try to steal them right off Baby GL's leg. He did pretty well with is vaccines, but he did end up with a 102.5 temp later that night.  I had already started him on Tylenol for his legs.  I figured it wasn't a pleasant procedure have 3 needles stuck in his tiny legs.  By early morning his temp subsided and we were back to normal.

Baby GL is definitely keeping us busy.  Our appointments only continued into this week.  The home nurse came Monday along with OT and Speech. It makes for a long morning.  Tuesday we were in the Endocrine clinic which looks at his thyroid levels.  Baby GL takes a thyroid med daily do to home hormone deficiencies with his thyroid.  The thyroid his so crucial for brain development, so that's how I understand it.  He'll probably stay on those meds until he's a year old and he's producing those hormones fully on his own. 

Thursday was our next big day.  We had an early visit with the GI clinic, Gastroenterology.  They deal with his G/J-tube for his feedings.  His tube area has actually bee a little infected so we've been treated it with a steroid cream.  Things are going well enough, though with his tube and feedings that the doctor said if, by some chance, we would need to replace the tube again because of another clog or it falls out we could try just a G-tube rather than the G/J.  The whole idea was to help Baby GL get bigger and reduce that reflux that causes him to aspirate if he spits up.  So all good news.  We followed our GI appointment with the long awaited swallow test. We went to Radiology where Baby GL was put on camera to see how he swallows.  A dye is added to his milk so that when we bottle feed him we can follow where the milk is going.  The first suck he aspirated, however, he reacted and started to cough.  He didn't cough right away but he did react which is a very good sign.  We started with a special needs bottle, but he wasn't getting much so we switched to a slow flow.  He did really well with that one.  What we want is for him to suck/swallow/suck/swallow and continue with that pattern.  He did that and did not aspirate.  

What does all that mean for feeding him?  Well, we were given the go ahead to continue feeding trials.  We are not going by volume, though, we are now measuring the amount of time he feeds.  Our hopes are to get him feeding more orally and slowly reducing the amount we give my the tube. We can't push too quickly, but I think within a few months we'll be all by bottle.  We even found out that in a couple months when Baby GL is 6 months, corrected age, we'll be able to start spoon feeding trials.  The doctors says there are some babies that never really get the bottle, but do really well with spoon feeding so we're very excited for that.  Maybe by the holidays we'll have a great gift of feeding.  

I did try nursing yesterday without pumping first.  Baby GL did really well and he was so so excited.  I have to be quick with the pacifier when I stop or he'll blow up with screams.  This morning I tried a bottle and it wasn't as successful.  However, his reaction to aspirating was really good.  He immediately began coughing which is a really good sign.  I will probably continue more with nursing since he controls that better.

We had one last visit today, by PT.  It was the first time we've had PT visit. OT deals a lot with shoulders, head and arms, where PT goes below the waist.  She worked with his legs and also his head control.  Seeing how he reacts to tummy time and practicing rolling over.  He did great.  My job is to continue the massages I've been giving him and to keep exercising him. He'll already dong yoga at only 7 months.

So after all that Baby GL's updated weigh is 8lbs 12oz.  He still about 19 inches but he is filling out fast.  We are actually getting snug in some of our newborn clothes.  I'm not ready to put those away yet.  He is officially 7 months old now.  I always giggle a little when people ask me how old he is.  When they hear 7 months their eyes get very wide in disbelief.  Even the nurse at the pediatrician gasped when I told her he was having his flu shot.  She though he was only a newborn.  Soon we won't be having those surprised faces, though, because I know he'll catch up and start running around with his cousin.  Just give him time.  I'm in now hurry for him to grow up. 

Back to the ER - Tuesday, September 28, 2010

When I was hoping for a relaxing weekend I ended up with the complete opposite.  Once again we took a trip to the ER.  After a long afternoon of trying to feed Baby GL through a clogged G/J-tube we ended up taking a trip to the hospital.  So the J part of the tube is where we feed Baby GL.  This part goes through the stomach to the Jejunum, part of the intestine.  This tube is actually tapered so it gets quite small towards the end.  With this new tube it's critical it gets proper care and unfortunately I wasn't properly taught.  Once we are done with a feeding the tube has to be flushed, but with a lot more water than I was giving.  Between the milk and meds it's very easy for the tube to get clogged.  So, after all my failed attempts on Saturday the only thing to do was go to the ER.  No doctors offices open on a Saturday evening and we needed to feed Baby GL.  

I spent about 4-5 hours sitting with Baby GL in the same room we had during our last visit to the ER.  Thank goodness for a tv because it was a long, boring visit.  After a few hours the doctors tried to get some info on if we could feed Baby GL through the gastric part of the G/J-tube.  That part is just like the tube he had which fed him in his stomach.  He's at more risk to spit up and aspirate feeding into the stomach, though.  After more time passed the ER doctor came back to tell us the Interventional Radiology will come in Sunday morning to replace the tube.  I have to admit I was impressed that a team that doesn't work weekends was coming in on a Sunday. Baby GL's Baptism was on Sunday so I made sure to tell everyone I saw about it to make sure we'd get out on time. 

The procedure was quick as was the original.  I wasn't there the first time so I had no idea what to expect.  It was basically a lot of rooting around to remove the old tube.  I watched on the monitor while they slowly removed the old tubing exposing the hole in Baby GL's belly.  The new tube was put in it's place.  Seeing the tube and how the procedure was done gave me a better understanding of it.  Now we are changing our habits on our cares knowing that it could easily happen again.

Baby GL's baptism was so beautiful.  It was a wonderful day.  A lot of family and friends we finally able to meet him.  He was so content during the ceremony and slept through the party.  Still, I think he really enjoyed.  

His most current weight now is 8lbs 5.5ozs, 19 3/4 inches.  He's packing on the pounds quickly now.  He really warms our home with his pudgy little cheeks.  My husband and I took our first family walk today. It was the perfect day to get him out to enjoy the autumn weather. Not sure he'll be up for a sledding trip this year, but we'll get out as much as we can before it gets to bitter for him. 

Having him home - Thursday, September 23, 2010

It's so nice to have Baby GL back home.  It took a couple days to get back into his routine and make the adjustments to his new meds and feeding schedule.  He's on continuous feedings now, but we are weening him to a point of having time off the feeds.  We will work up to a schedule where he'll be fed 8 hours overnight and then two 3 hour feeds during the day.  It equals 14 hours feeding and 10 hours off which I think will be great for Baby GL continuing a normal baby life.  We do still get to practice bottle feeding and nursing.  I've actually been directed to nurse as much as I can after each time I pump to keep him practicing.  Hopefully we won't need to keep this up for a terribly long time but it will be months.  He needs to get bigger and have all the right parts functioning to prevent his aspirating issues.

Baby GL spends most of his day in one of the many chairs and swings we have for him.  I think the most difficult time of day is early morning.  Baby GL has problems with gas so he gets very irritable even while he sleeps.  That means I don't get a great amount of sleep because he is constantly wiggling around and baby grunting.  One thing we will probably try is venting his tummy overnight to relieve the gas.  He can't be constantly burped on the continuous feed so you have to find other ways to relieve the air he takes in.

Baby GL's most current weight is 7lbs 15ozs and 19 3/4 inches. He's getting so big so quickly now.  I was so pleased to hear the nurse say that he's pretty right on for his actual age, which is about 3.5 months.  He grabs for things, he sucks his fingers, he's been holding his pacifier, and now he starting to coo a lot more.  His eyes are getting better at locking on you and when he hears us he looks for us.

We could not be prouder of the journey we've been on with Baby GL.  He amazes us eveyday.  My Husband just sits up all night watching him and talking with him in his native Albanian.  I'm working on the Polish (very little) and English but I think we'll be pleased with whatever language he chooses.  I think Baby GL and his cousin will just make up their own language with how many they are being exposed to.

I feel so blessed to have a husband that gives me time to sleep, but yet he feels the need to be right by Baby GL's side.  He works with him on different developmental goals.  One thing he love to do is hold his hands and gently lift him from an already inclined position. Baby GL is really great at tucking his head and lifting up as he should.  He has such strong muscles.  The wonderful thing is that even after everything Baby GL has been through he is really such a happy baby.  He smiles and doesn't cry that much, well, at least not yet.  I'm sure things will change once he realizes we are wrapped around his tiny little finger.

Coming home again - Sunday, September 19, 2010

So Thursday we were planning Baby GL's homecoming for Friday.  The goals were to move him from a continuous feed onto his normal bolus feeds every 3 hours.  This doesn't sound like it should be complicated, but thanks to the inexperience of a resident Baby GL had a few problems.  On a continuous feed Baby GL gets 20 ccs of milk over one hour.  On a bolus feed he gets 60 ccs over about 20 minutes.  The process of weening to bolus, as done in the NICU, was to move slowly decreasing the time that it takes to give 60 ccs.  Maybe working down from 3 hours to that 20 minutes.  The resident decided to skip that weening process and tried to feed Baby GL that 60 ccs right away. Well, the outcome wasn't good.  Baby GL ended up aspirated and dropping his breathing to the point of turning a shade of blue.  This incident could've cost him a lot more time in the hospital which is nothing compared to what could have happened.  

Because of that incident the resident recommended the GI doctor come see Baby GL for his issues with aspirating and reflux.  So Friday when we were expecting to take Baby GL home, instead we were going to meet with the GI doctor and I was swelling with anger.  On the phone I spoke with the nurse, the resident and then finally this GI doctor. After hearing his opinion about what Baby GL was doing he recommended a couple procedures.  One of them being surgery, which as a parent makes your stomach sink.  I was so angry to hear that we needed to take action on something that was a mistake that could've been prevented.  It was really just the icing on the cake.  Our whole experience in the hospital was less than satisfactory.  We missed the care he had in the NICU.  The nurses were so cold and just treated him like another number coming and going.  It was so disappointing to witness.  

On that Friday when I arrived at the hospital, about ready to raise the roof, that resident was saved by a very pleasant and helpful nurse.  I vented my frustrations to her and she was nothing but wonderful to listen and take such great care of Baby GL.  She went out of her way to make him comfortable which was so appreciated.

I did get a chance to speak to the GI doctor while I was there and cooling down from my rampage.  He reviewed the procedures we discussed over the phone, with pictures. The first was major stomach surgery that would stitch the top of the stomach to shrink the opening. That would reduce most of the reflux from being able to escape from the stomach.  This was not something I was about to put my child through.

Our next option was to do a G/J tube.  Baby GL already has a G-tube that we feed his directly into his stomach.  The G/J tube would be in place of the G-tube by directing a tube through the stomach and directly to the intestine.  With the stomach empty there wouldn't be much of anything to reflux.  With this option Baby GL would have to be on continuous feeds only because the intestine could not handle a full 60+ cc feeding in a short amount of time.

The only other option we had was to do nothing and only be on continuous feeds to help digestion.  Still that would not reduce his chances to reflux and possible aspirate.  I felt that we needed to doing something to prevent another episode of aspirating.  If it happened at home and we couldn't get him to the hospital on time, I hate to imagine what could happen.  The decision was made to do the G/J tube.  

After the GI doctor reassured me that on a G/J tube Baby GL wouldn't be constantly connected to a feeding tube I felt better about that choice.  My concern was that if he went home on continuous feedings how would he have baby time.  We are able to make a schedule of his feedings that would leave plenty of time throughout the day where Baby GL wouldn't need to be eating and we could do tummy time and may learn to crawl.  The other great news was that we could continue working on oral feeds.  I could continue giving small amounts of milk through a bottle and nursing.  It was the best choice to make under the circumstances and to keep him safe at home.  The best news came from our wonderful nurse when she told us the procedure could be done 

Saturday morning and we could get Baby GL home on Sunday.  

The procedure was very quick and there was no need to medicate Baby GL.  He probably doesn't even know the difference.  He was really amazing going through all these procedures and still being smiley and happy.  

Baby GL is now 7 lbs 6 ozs and growing fast.  He did come home today.  It was frightening putting him in his car seat after what happened the last time, but he took it like a troop.  Keep the pacifier near by and let him look out the window.  He's spent most of the day sleeping and hanging out with Daddy.  We start again getting used to a routine, but it's well worth the time knowing he's home again.  He's getting ready for his coming out Baptism party with his cousin, he's even been practicing his wave.