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.

New Room - Wednesday, September 15, 2010

Baby GL is getting closer to coming back home.  On Monday his oxygen was decreased to 2 liters at 100% oxygen.  His x-rays were improving but still showing some cloudiness in his upper right lung.  I guess with his lung disease it may take time to clear up, but the doctors don't sounds as concerned.  Baby GL spent most of the weekend being deep suctioned in nose and throat which he is less than thrilled with.  He had a lot that needed to come out, though.  I only wish I could bring that could bring that suction tool home with me.  The little suction bubbles just don't compare.

Yesterday Baby GL was down to .5 liter of oxygen at 100% which is low enough for him to come home.  He's not home yet, but he did move out of the Pediatric ICU. He's moving up in the world, all the way up to the 11th floor.  He has another private room, even with a full bathroom this time.  There wasn't a need for the constant care in the ICU any longer so a regular pediatric room is where he's recovering. Hopefully it's a short stay and he'll be home this week.  

Watching TV - Saturday, September 11, 2010

Baby GL is a little trooper.  Yesterday's x-rays showed more of the cloudiness in the lungs that we don't want to see.  Due to that they left him on 6 liters of pressure on the high flow cannula with 45% oxygen. Overnight Thursday he was down to 4 liters but with the x-ray results the goal was to open the lungs more to clear out the junk.  The good news is that they are not calling what he's had pneumonia.  It's more the result of shallow breaths and residual aspiration.  He is coughing a bit more now which is good to work out that junk.  

Other than hanging out and trying to sleep there really isn't anything he's doing.  I had to laugh when I went yesterday.  The nurse was trying to settle him so she pulled out the vibrating chair and propped the tv in front of him.  I walked into Barney and Friends.  He seemed to like it.  He fell asleep.  I may have to break the tv habit, though, when he comes home.  He probably liked having the noise and songs.  The other nurses kept finding music on the computer for him because all those baby musical toys time out too soon.  Baby GL is very clever.  He knows what he likes that is for sure.  

G-tube Button - Thursday, September 9, 2010

Baby GL is doing much better.  The x-ray shows his lungs are much clearer.  He still has a cough, mostly when he gets excited.  Today the only plan of action is to try him back on the high flow cannula at 6 liters, maybe 40% oxygen.  He's been on the C-PAP, with one day of high flow that wasn't very successful.  Now he shows signs of being annoyed with the C-PAP so it's time to try the cannula.

With Baby GL back at Children's Hospital we are still able to fulfill his appointments.  I was going to take him to switch out his feeding tube to the button on Tuesday.  Since he's in patient the team was able to come to him yesterday to get it done. With the button there isn't a long tube hanging around in his clothing for feeding.  It's now a tube that gets connected when it's feeding time and disconnected when we're finished.  Much nicer.  He also has another eye exam.  He was scheduled to go in today but since the doctor visits the NICU on Wednesdays she was able to come up to him in the PICU and have it done.  Still no need for surgery and they don't need to see him for 3 weeks.

Baby GL's most current weight now is 7lbs 2.5ozs.  That's actually down from when he was admitted to the hospital, but only by maybe an ounce.  He looks really healthy, keeping the nurses busy with his attitude.  He has needed some tylenol since he had his feeding tube switched over just to settle him.  I'm sure it wasn't a comfortable procedure.   

Our goal is just to work on bringing down his oxygen needs and then he'll be able to come home.  I think in the PICu they move more progressively to get the children him.  That's wonderful for us.  We would love to have him home again and we could only have faith that we won't need to go back to the ER.  

First night back in the hospital - Monday, September 6, 2010

A long night on the hospital pull out.  Baby GL is doing well.  All night he was on 8 liters of pressure on C-PAP, down to 60% oxygen from 100%. His CO2 levels are improving. Around 10am they turned the pressure to 6 liters.  The goal is just to continue weening his oxygen. Baby GL was a little restless last night so he was put on a light sedative to get him to relax his lungs and calm him.  Especially on C-PAP he fights and the mask comes loose.  

Today they will start feeding him his milk again.  I was forced to throw 4 oz of milk out yesterday that I had thawed for him.  It's difficult after 6 months to continue nursing with a pump and I can't keep up to his feedings so to see any of it dumped just exhausts me.  

Baby GL will have another x-ray this afternoon.  We are hoping to see the pneumonia clearing up.  We are expecting to be in the hospital a few more days until it's completely clear.   

Today our goal is to just let him heal.  It's a holiday at least so no worries about needed to be anywhere.  

To the ER - Sunday, September 5, 2010

Baby GL has had a busy week.  We started with a trip to his Pediatrician on Monday.  Tuesday we got his g-tube repaired which makes feedings so much easier.  We were actually able to bump up his appointment to get his g-tube button which will be flat to his flesh rather than a long tube sticking out.  

By Thursday we saw the visiting nurse.  His most current weight then was 7lbs 1oz.  Huge growth over the 7 days he was home.  By Friday we had a visit from OT and Speech.  They just came to access him and see where he's at with feeding and his muscle control.  

The nights are still a little exhausting which was expected.  He sleeps pretty much through the night, but come early morning he gets a little fussy and gassy.  He is on the continuous feeds through the night and I think he gets full going into the morning and just uncomfortable.

After a great week we were thrilled to go into a long weekend as a family.  However, Saturday didn't start great.  Unfortunately, Baby GL got a little full on his food and he spit up a lot of it.  When Speech came on Friday she gave us some tips on positioning him for better digestion which seemed to work, but we didn't try it that morning.  When he does spit up he tends to aspirate causing him to choke a bit.  Well, that left him with a bad cough going into Saturday evening, but he managed to rest.  

By later into the evening I was becoming more concerned about his cough.  We tried to suction his nose and mouth, which didn't go well.  I ended up gagging him which just made him spit up again.  With that he was wheezing more in his breathing so we tried an Albuterol treatment to open his lungs.  It seemed to work by making him more comfortable for a little while.  The concern was still there that he was working hard to breath.  Llazar ended up holding him through the night just to keep him comfortable and calm.  We continued the treatments through the night per pediatrician's advice as well as cutting his feedings down to half to help with his reflux.  It's that reflux that really causes a lot of his aspirating.

Sunday, Baby GL's 6 month birthday.  We celebrated with a trip to the ER.  Unfortunately, Baby GL's breathing got worse.  When we tried to get him into his car seat he turned blue and dropped his heart rate. Thank goodness for a heart rate monitor.  I held him in my arms while we drove him directly to the ER at Children's just to be safe.

The outcome after x-rays, aspirating pneumonia.  He showed a lot of fluid in his lungs so he was put on antibiotics for the pneumonia.  After all morning in the ER doing x-rays and multiple attempts to get an IV in we were finally transferred to the 10th floor into a private room under observation.  Admitting him took a long time.  Everyone asks the same questions over and over.  

I think after getting to the ER around 8:30am we finally left the hospital about 3ish.  We wanted to run home to shower and eat and just wake up then to return to the hospital.  Right as we got home the phone rang and we were told to get back, that they were moving him to the Pediatric Intensive Care Unit because his breathing wasn't improving. 

In the PICU he was put on C-PAP which was the added pressure to help reduce the amount of CO2 in his lungs.  There are a lot of new monitors and alarms.  He seems like he's getting comfortable.  I guess his right lung is where the primary pneumonia is.  We are waiting to see is there are any other concerns.  I has a touch of the flu when he came home so I could have caused some of this discomfort so they took cultures to see.  I'm angry at myself because I didn't realize I was sick until it was too late.  Allergies and stress are very distracting.  

So now we sit on the 5th floor of Children's hospital listening to the constant beep of a monitor praying that our little man will be just fine. What a way to celebrate a 6 month birthday.  He was only home 9 days and already he's back in the hospital.    

First pediatrician visit - Monday, August 30, 2010

Its was a pretty good first weekend.  It started out with a bump.  I managed to tear the end of Baby GL's g-tube so now it takes a lot of work to get his feeding done without leaking it out everywhere.  The nurses I spoke to kept telling me he'll need to have the whole tube replaced which was stressing us out.  After finally being able to speak to the surgery clinic we can go into tomorrow to have them repair the end with and adapter of sorts.  Thank goodness.

We took our first trip to grandma's house to visit with family.  I wanted to do it myself to get used to traveling with oxygen, monitor, diaper bag and car seat.  It wasn't as bad as I thought it would be.  It's good he doesn't weigh too much yet.

Baby GL had his first pediatrician visit today.  The car seat didn't go as smoothly as scheduled.  Just a slight slip in positioning and the alarm blares.  We finally got going and I managed to get a thermos of coffee in the diaper bag.  It was a hectic morning.  

At the doctor we weighed and measured him.  He's now 6lbs 12.5ozs and 18.5 inches.  Getting so big now coming up on 6 months old.  Not much else to report from the doctor.  We'll be going back in a month to get shots and flu shots.  I guess for him he'll get 2 rounds of flu shots. Then he'll get the RSV virus vaccine going into winter.   

Other than hanging out in his swing and other numerous toys he hasn't been too productive.  He's been so sweet and the time with him is so wonderful.  

First 24 hours home - Friday, August 27, 2010

We made if through our first 24 hours with Baby GL home.  It was a rough night for us all.  I think Baby GL needs some time to get adjusting to his new surroundings.  He didn't sleep at all last night.  The moment he would fall asleep his monitor would alarm that his heart beats were too slop.  We'll try a new sleeping position tonight.  All the rest of the time the  monitor hadn't gone off.  

Other than the lack of sleep we all made it through all the feedings, medications and breathing treatments.  My husband and I tried to take shifts as best we could.  After all is said and done we are just so happy that we have him home.  

Taking him home - Thursday, August 26, 2010

So much to know and learn.  Baby GL has just sat back while Mom and Dad have been put to the test.  We had to learn feedings, medications, lung treatments, and all his at home equipment.  It's a lot of information being crammed into a short period of time.  You would think that after 6 months this would all run very smoothly.  For the most part it has but it still feels like we need more time.

Tuesday night was my slumber night with Baby GL.  I learned his at home monitor system and lung treatments earlier in the evening.  I continued to also learn his medications and schedule.  We'll be doing most everything the nurses were doing but at home now.  On his home monitor we were able to go into the parenting room where I was alone with Baby GL.  He still had oxygen and his crib.  In order to make things a little easier for our nights Baby GL will be on a continuous feed even at home.  The pump only runs for 4 hours at a time so we still have to get up to add milk and reset the pump.  During our overnight Baby GL slept throughout must of the night.  He fusses a little and is an early riser.  It was really peaceful, thought, just having him to myself.  

All of Wednesday was dedicated to all the last minute items.  I must have met every department in the hospital; Speech, OT, Nutrition, Surgical, and more.  There were papers to sign, techniques to learn, even recipes for fortifying his milk.  

By noon Baby GL finally had his eye exam.  We've never been there for that so it was interesting to watch.  It was quick and he's not a fan of the doctor poking around his eyes.  The doctor gave him another 2 weeks until she'll see him again so great news for no laser surgery yet.
  
After the eye exam Baby GL went into the OR with the ENT doctor to have his throat and lungs looked at again.  Last time ENT saw him there were some cysts beneath his vocal box. The doctor decided it best to remove them.  That procedure went great.  The only thing I wasn't aware of was for the end of the procedure he needed to be intubated.  My understanding was that it was necessary because of the anesthesia they gave him could cause apnea.  That left us hanging because it's always unknown how long he'll need to stay intubated. After the procedure was complete and he was back in his room he was doing well enough to extubate.  Great news because keeping the breathing tube would've pushed back his homecoming.

Into Wednesday evening Baby GL had his car seat test which he passed.  I guess he really liked it.  Just something else to check off his list that the nurse actually had on the door with everything else that needed to get done before discharge. 

So Thursday; medications needed to be picked up, the resident doctor was scheduling all Baby GL's appointments, the picc line finally came out.  Baby GL was so close.  The amount of papers needing to be signed was crazy.  The list of appointments we have to remember to get to was even crazier.  He needs to go to the endocrine lab, ENT, eye doctor, hearing doctor, surgical, GI, his pediatrician and more.  We're booked out for a few months.

After all was said and done we finally got to go home.  Baby GL had his first ride in his car seat.  He wasn't thrilled at first to get bundled in but after we got into the car and started moving he just watched out the window like a natural road tripper.  Most people find the car seat cumbersome enough to carry, well, with Baby GL we had the car seat, the oxygen tank and the home monitor.  We didn't have the diaper bag yet which will just be something else to carry.  

He's at home, he's crying and fussy, but we're working hard to make him just as happy as we are to finally have him home.  

Preparing for homecoming - Sunday, August 22, 2010

It's been a busy week.  Baby GL is doing wonderful.  He is still on .1 liter/100% of oxygen flow.  His CO2 levels have remained low with that amount of oxygen which is a great sign of continued lung development. 

On Tuesday Baby GL had a visit from cardiology checking his heart. Because of his lung issues cardiology looks at the heart for signs of extra pressure in the heart the lung issues may have caused.  It's very confusing exactly what they were looking for.  However, the echo results were good so no worries from his lung issues.  The cardiologist did find hole in his heart which is pretty normal for small babies.  There isn't anything that they'll do at this point but keep an eye on it. Sometimes these holes close up on their own.  Because of the size of his the cardiologist thinks it may not close on it's own so maybe in a few years he'll undergo a procedure to fix the hole.  It will not affect his way of life having the hole, but repairing it will bring on a little more energy he may of not know he never had.  

Wednesday Baby GL had another eye exam.  He is on the border of needing laser repairs on his eyes but it's not yet time.  He'll be seen again next Wednesday and regularly until we know that everything is fine.  The risk involved is that his the blood vessels grow so much that the retina may detach.  This is why the exams are so important.  It's again a typical thing to see in these preemies.

Other things that have been happening are my husband and I learning how to use and care for the g-tube.  Slowly he's gone up on the amounts of milk.  Gradually he would go up in the amount of milk and how quickly the give it too him using a timer that expresses the milk over a period of time.  The process with help him better tolerate the milk.  Now he is at 57 cc's over 30 minutes.  He may already be on full bolus feeding which is when the milk is just manual put in the syringe without the need of  timer device.  We have to know how to clean around it and position it for comfort and use.  In about 6 weeks he'll move to a NICU button which won't be a long tube but a flatter button that is more flush to skin.  That will be much easier for bathing and dressing.  

Baby GL still has a picc line in his leg and it will remain there until he is on those full bolus feeds and I believe until after he's seen by the ENT doctor again.  It's not being used now but it's not easier to take it out them put it in again if he'd need it.  

On Friday Speech did a swallow study on Baby GL.  He's been taking feeds from a bottle pretty well, about 10-15 cc's maybe once a day when Speech comes to work with him.  However, the therapists knows his habits so after 3 sucks they stop and let him compose himself. More than that and he chokes.  The swallow study shows if he's protecting his airway when he drinks.  Unfortunately, Baby GL does not which is why he beings choking on his milk.  So this means that he will continue to work with Speech and hopefully as he grows older he will learn.  His g-tube will be his primary form of eating until then, but the good news is that he still gets his pacifier.  Baby GL would be so angry if I took that away from him.  

Baby GL has officially grown out of his first preemie clothes so I'm packing that up now.  His weight has varied so he's still about 6.5 lbs. He reached 3 kilos at one point but has lost a little since so he will be having more calories added to his feedings I'm sure.  

So our busy week has really been a result of Baby GL finally being discharged and able to come home.  The plan is set for Thursday, August 26th as Baby GL's homecoming.  The nurses have been so wonderful putting together a plan of his discharge which is why he's had visits from nearly every department in the hospital.  Today I and my mother will be going in to have infant CPR from the nurses.  Each day I go there is something new I need to learn and prepare for.  I've done so much laundry and set up all his things at home so that we are ready for him coming home.  His car seat is ready and going to the hospital today and he'll have his car seat test to make sure he can still keep his saturations in his car seat, breathing and heart rate.  Tuesday I will learn Baby GL's at home monitoring system and stay overnight with him in the hospital doing all his cares.  Wednesday is reserved for any equipment that needs to come home, preparing prescriptions and any other loose ends.  The nurses want us to have a good nights sleep before he comes home on Thursday.  Almost 6 months and we're in our final days until he comes home to us.

There is one thing that can put a halt in his homecoming.  If on Wednesday his eye exam shoes the need for laser repairs then his homecoming will be put off a few days.  Aside from that I think we're ready.  I think he's ready.  My husband and I have been overwhelmed with emotion with the news of him coming home.  It's been so long but it's funny how it feels like it's so soon.  I am so excited to know that I will be with him at home everyday to care for him.  We've missed so much already and now we don't want to miss a thing.    

New picc line - Saturday, August 14, 2010

Baby GL is doing so great.  My timelines are getting a little messy with how quickly things have been moving.  Sometime yesterday Baby GL moved down to .25 liters of oxygen pressure with 100% oxygen.  When he comes home the oxygen can only be on 100% so it's about taking the pressure down.  This morning I see he's now down to .1 liter which is home settings.  Very exciting.  

However, before he can come home he needs to be taking full milk feeds.  Only once did they try a continuous feed of 2-4 cc's of milk.  After finding he was mysteriously stooling blood he was taken off.  Nothing has come up as a cause yet for the blood.  Yesterday sometime the blood stopped.  He hasn't had anything since.  

They decided to put in a picc line for his fluids since that will be more long term.  Baby GL has already had iv lines going into his hands and feet and now his head.  To prevent having to constantly restart ivs a picc line would be better.  

A picc line was attempted yesterday but the nurses were unsuccessful so this morning Baby GL went down to radiology, if I remember that correctly.  That team was more successful placing a picc line in his leg than goes into the groin.  I guess that's normal.  I walked in this morning to see Baby GL with the resident doctor and nurse holding his leg because he was bleeding out quite a bit from the site of the picc line.  The bleeding stopped, but he was given morphine to keep his still.  He moves around so much causing some bleeding from the picc line site.  Because of that loss of blood he may need another transfusion.  His blood count was low but a decision was make to wait until tomorrow to see if Baby GL can recover some on his own.  

The great news is that because there is no mysterious bleeding any longer he was able to get his milk back.  He went back onto the 2 ccs of continuous feeding every hour.  Hopefully he will be a happier baby having some food in his tummy and we can get his bowel moving.  

Curious symptoms - Thursday, August 12, 2010

Baby GL is having another good day.  The only concern was that around 4am the nurse found blood in his diaper.  The cause is still a little unknown.  X-rays show that everything seems to be fine so the only explanation is something left over from surgery.  As a precaution, Baby GL was taken off his feeds and put on an antibiotic.  

Aside from that he's continued to go down on his oxygen needs.  He's now on 2 liters with about 25% oxygen.  The time he needs a little more oxygen is when he's restless because he's very hungry.  Hopefully he'll get milk tomorrow.  The pacifier can only distract him so much.   I was able to do some oral cares this morning with milk. Hopefully he'll be so excited to bottle feed after all this. 

Wednesday, August 11, 2010

Baby GL is adjusting to having surgery.  He is still intubated with the hopes of moving to high flow of 4 liters of pressure.  The tube really bothered him through the night and was needed morphine to call himself.  I was told that by 6am he finally settled.  He got so upset he clamped down and needed assisted breaths with an oxygen bag. Hopefully extubating will relieve the stress on him and allow him to relax and heal.  The problem occurs that with some of the meds and if Baby GL is too out of it he will let the machine do his breathing for him.  Today he's been taking more of his own breaths which we hope will be enough to extubate.  
He still hasn't been given milk.  We are waiting on his bowel to start moving and the nurses say it sounded much livelier than yesterday so that's good news.  A diuretic was started yesterday to relieve some fluid retention.  It's typical after having gotten a blood transfusion.   
Aside from that he's doing everything that is typical of a baby after surgery, I guess.  I got a look at part of his stitches yesterday and thing seem to look good.  Once again we just wait.  We've had a little set back with the breathing tube but I feel confident he'll catch up.