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.
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.
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