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.