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.
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