We have had long nights this weekend! (And, I anticipate another tonight.) Normally we suction Ethan when he goes to be at about 7:30 pm. Rarely will we suction him again before 6:30 am. However, this weekend we have been suctioning non-stop (so it feels) at night. Everything else is fine, except for slight retractions. I think I will be calling the pulmonary clinic in the morning because I am fearful something more is going on with Ethan. The other odd behavior is Ethan seeming like he is really trying to talk...a lot. Much more so the past few days. He isn't making any noise though.
If you read this tonight, please pray for a calm night for all of us, but mostly for Ethan. Poor guys needs some good sleep!!
Sunday, May 31, 2009
Saturday, May 30, 2009
More teeth?
Ethan has been feeling a little yucky the past 48 hours. He is very junky and has been suctioned at least double his normal amount. He doesn't have a fever, or any other signs of a cold. His secretions are normal. He is retracting a bit (working hard to breathe) and seems upset at times. But, we can't put our finger on what is wrong. He is still sleeping from last night! I was up for most of the night and from 2-4 am the night before with him. He wasn't awake, but sounded horrible and needed frequent suctioning so that he can breathe well. Interestingly though is the fact that his saturations are really high. He as been between 96-99 for most of the morning. He isn't tachypneic this morning either. Just the retractions.
One new thing is that he seems to be trying hard to talk. We don't know if the size of his trach is bothering him or if he is just taking in a lot more air from his upper airway. I am going to let him sleep as long as he needs, as sleep is so important. He is keeping his heart rate down as he sleeps too, so it doesn't really add up. That is why for now, I am chalking it up to teething. Who knows!?
One new thing is that he seems to be trying hard to talk. We don't know if the size of his trach is bothering him or if he is just taking in a lot more air from his upper airway. I am going to let him sleep as long as he needs, as sleep is so important. He is keeping his heart rate down as he sleeps too, so it doesn't really add up. That is why for now, I am chalking it up to teething. Who knows!?
Wednesday, May 27, 2009
Park
Today Ethan and I went on a long walk to the park. I was curious what he would be able to do, considering he is attached to an oxygen tank. Everything age appropriate (with the exception of the slide) worked for us. As you can see from the pictures below, he sat in the cute ladybug and was able to use the swings. The oxygen tubing is long enough that I was able to put the tank on the ground and still give Ethan enough slack so that he could gently swing. He was very busy investigating his new surroundings, but he was a happy guy. At one point, he even fell asleep in the swing.
The first picture is of Ethan showing us that he may be getting too big for his swing.
This one cracks me up because he looks like he is driving with his one arm resting on the stroller and the other on the steering wheel!
The first picture is of Ethan showing us that he may be getting too big for his swing.
This one cracks me up because he looks like he is driving with his one arm resting on the stroller and the other on the steering wheel!
Monday, May 25, 2009
PMV update
I have continued to increase Ethan's time on the PMV. He is up to about 20 mins. We still aren't hearing much out of him, but I did use our stethoscope yesterday and could hear tiny noises. His coughs are different and I can still feel air coming out of his mouth, so I know he is using his upper airway.
I spoke to a dear friend of mine about it and she wasn't surprised that he hasn't made noise quite yet. Think of your lungs/upper airway as a vacuum. If the suction in the vacuum is disrupted, then the suction is not as great. That is to say that since Ethan has had a disruption in his subglottic pressure (i.e. the "vacuum") from the trach, he is not used to having any pressure to force air past his trach. Now that he is given some of that pressure back with the valve, he doesn't realize that he can make noise. We tried to get him to laugh with the valve on, but he didn't laugh until after I took it off. Maybe soon?
I spoke to a dear friend of mine about it and she wasn't surprised that he hasn't made noise quite yet. Think of your lungs/upper airway as a vacuum. If the suction in the vacuum is disrupted, then the suction is not as great. That is to say that since Ethan has had a disruption in his subglottic pressure (i.e. the "vacuum") from the trach, he is not used to having any pressure to force air past his trach. Now that he is given some of that pressure back with the valve, he doesn't realize that he can make noise. We tried to get him to laugh with the valve on, but he didn't laugh until after I took it off. Maybe soon?
Friday, May 22, 2009
Passy-Muir Valve
The Passy-Muir Valve (PMV) is meant to give Ethan the opportunity to start to vocalize. Developed by a quadriplegic, it uses a closed valve system that only allows air to enter the trach, but not exit. Instead, all air must be pushed past the trach, and up through the vocal chords, to then engage the upper airway. We received our PMV yesterday. I tried it on Ethan a few times, normally for no more than 3-5 minutes each time. It fits onto the end of Ethan's trach and you can put it on or take it off quite easily.
Each time I tried it, I kept Ethan on his pulse ox monitor so that I could judge how he was doing. It has to be such a new feeling for him to use his upper airway. I haven't heard any vocalization per se, but I can tell that he is moving air up his upper airway. His saturation levels stay in the 90s and his heart rate remains normal. I don't know if it will truly work with the size trach that he has. And, I don't know that he knows what to do with the sensation of air in his upper airway. I guess for now it will be a good training tool for using his airway. It is encouraging that he remains stable on the monitor. However, 3-5 minutes isn't very long, so I hope the duration can increase in the coming weeks.
We have waited 13 months to hear our baby's voice. So, I guess, my heart was set on hearing something (besides a little grunting) as 75% of kids make noise the first time they have the PMV fitted. If his trach was one size smaller, the theory is that we would hear him make noise all the time. But, I skeptical about that too. It all depends on the level of collapse his trachea has. If his PAs are still putting too much pressure on this trachea and bronchi, then a smaller trach won't yield a different response. However, his current trach is quite big for him. I know of older kids that are in trachs smaller than Ethan's. His large trach size is due to when he was on the ventilator and also because of the level of collapse in his trachea. We want to ventilate him as much as possible and if the trachea is going to collapse against a smaller trach, then he has that much less area to move air through. I just have to be patient.
Each time I tried it, I kept Ethan on his pulse ox monitor so that I could judge how he was doing. It has to be such a new feeling for him to use his upper airway. I haven't heard any vocalization per se, but I can tell that he is moving air up his upper airway. His saturation levels stay in the 90s and his heart rate remains normal. I don't know if it will truly work with the size trach that he has. And, I don't know that he knows what to do with the sensation of air in his upper airway. I guess for now it will be a good training tool for using his airway. It is encouraging that he remains stable on the monitor. However, 3-5 minutes isn't very long, so I hope the duration can increase in the coming weeks.
We have waited 13 months to hear our baby's voice. So, I guess, my heart was set on hearing something (besides a little grunting) as 75% of kids make noise the first time they have the PMV fitted. If his trach was one size smaller, the theory is that we would hear him make noise all the time. But, I skeptical about that too. It all depends on the level of collapse his trachea has. If his PAs are still putting too much pressure on this trachea and bronchi, then a smaller trach won't yield a different response. However, his current trach is quite big for him. I know of older kids that are in trachs smaller than Ethan's. His large trach size is due to when he was on the ventilator and also because of the level of collapse in his trachea. We want to ventilate him as much as possible and if the trachea is going to collapse against a smaller trach, then he has that much less area to move air through. I just have to be patient.
Wednesday, May 20, 2009
Pool time
It has been quite hot the past few days. I ordered a pool for Ethan that is perfect for his age. It hooks directly to the hose and has little fountains that can get higher with greater hose pressure. The only drawback is that the water is cold. I ran it for a bit a few hours before our pool time and let the sun warm the water. It worked until all the warm water was gone. But, he did well. As you can see from the pictures below, he didn't enjoy the first moments. Maverick was a great assistant, as he distracted Ethan. After that initial moment Ethan seems to enjoy it, though he was very busy trying to take in all the new sounds and sights of the backyard.
He has been doing better the past four days, although he has had massive vomiting the past 24 hours. It isn't quite time for a growth spurt yet but maybe he is changing up the pattern.
He has been doing better the past four days, although he has had massive vomiting the past 24 hours. It isn't quite time for a growth spurt yet but maybe he is changing up the pattern.
Sunday, May 17, 2009
Sleep...for us all!
Holding Ethan's fever at bay helped immensely last night. Yesterday afternoon he took a 4.5 hour nap and then slept well all night. He also slept in this morning. Once he got up, I took his temperature and his fever finally broke. Yay! And, he started vomiting again, so we know that he must be feeling better. (Of all ways to know that your child is feeling like himself!!) I still have his oxygen up and haven't been able to wean him down yet, but we will work on that in the coming days.
It was nice to see his heart rate down again as well. When he was trying to sleep the past couple of days, his heart rate would be up in the 150s, which for sleeping, is quite high. Normally during naps his heart rate is between 108-119 and at night it is in the 80s or 90s for the most part. That is one reason that it is so important that he sees a doctor when he gets a fever. With cardiac disease and pulmonary disease, one can't be too careful! Thank you for all of your prayers! It is so nice to see Ethan rolling around and playing again!
Pictures are below from the E.R. He was very happy once he got his Motrin!
It was nice to see his heart rate down again as well. When he was trying to sleep the past couple of days, his heart rate would be up in the 150s, which for sleeping, is quite high. Normally during naps his heart rate is between 108-119 and at night it is in the 80s or 90s for the most part. That is one reason that it is so important that he sees a doctor when he gets a fever. With cardiac disease and pulmonary disease, one can't be too careful! Thank you for all of your prayers! It is so nice to see Ethan rolling around and playing again!
Pictures are below from the E.R. He was very happy once he got his Motrin!
Saturday, May 16, 2009
Feeling better
Ethan had a restless night sleep. It seems that the fever impacted his breathing and his pulse ox was all over the place. We would see a dip especially when the Motrin was wearing off. Craig was up from midnight to three and I was basically up from three until Ethan woke up. His alarm was going off constantly. This morning I gave him both Tylenol and Motrin when he woke up. He was so tired that he went back to sleep for a couple of hours. But, when he woke up the second time, he was feeling much better. Lots of smiles and laughs. He has been jumping in his exersaucer.
We will continue on the Tylenol/Motrin regiment throughout the next 24 hours. With the mix, this morning his temperature was normal. I really want to make sure that we keep the fever at bay so that his breathing calms down and we can turn down his oxygen. (I turned it up at 3:30 this morning.)
I have been attempting to upload pictures, but there must be something wrong with the blogger website, as I can't get them to upload. I will do so when I can.
We will continue on the Tylenol/Motrin regiment throughout the next 24 hours. With the mix, this morning his temperature was normal. I really want to make sure that we keep the fever at bay so that his breathing calms down and we can turn down his oxygen. (I turned it up at 3:30 this morning.)
I have been attempting to upload pictures, but there must be something wrong with the blogger website, as I can't get them to upload. I will do so when I can.
Friday, May 15, 2009
Back home
We are back home and Ethan is tucked away, sweetly sleeping in bed. Poor guy has had a rough 24 hours. And still, even with the Motrin, he continues to have a fever of at least 101. At this point, we are chalking it up to incoming teeth. All doctors feel that it isn't a reaction to the MMR. Which, can I just say, is a little confusing?! I mean, all of the written and oral warnings (given to us by the doctors) about reactions to MMR said that any reaction would surface 7-12 days post shot. So, I was a little confused about that. Oh well.
His lungs looked good, as did his urine and ears. There really isn't anything else to cause the fever. Both Craig and I feel good that we got him checked out as his 102.6 fever was nothing to take lightly.
Ethan seemed to respond well to the Motrin, as his demeanor completely changed about 20 minuets after he got it. He was laughing and smiling. We feel great about our experience there, as the nurses and doctors were wonderful. Our E.R. doc is friends with one of the fellows in the pulmonary group at Children's. He told us to say hello from him the next time we are there. Such a small world. We also told Ethan that if he really wanted to see medical personal, we could arrange a social visit and that he doesn't need to be so dramatic about teeth coming in! :)
We hope and pray that Ethan will get a good nights rest and really shake whatever is the problem.
While I was still nursing him, I had stashed away some breast milk with the thoughts that should Ethan get sick, a little bit of mama's milk would help out. I pulled out the rest of it and gave it to him before bed. Hopefully it will aid in his recovery.
On a totally different subject, the pattern of vomiting and yet gaining weight continues. Ethan was up big time and is now 21 lbs 1 oz. Our home nurse just kept repeating, "this doesn't make any sense" and "how did he gain any weight?" My answer was, "because it is Ethan and Ethan writes his own book!"
Craig and I are very tired at this point and deeply appreciate your prayers.
His lungs looked good, as did his urine and ears. There really isn't anything else to cause the fever. Both Craig and I feel good that we got him checked out as his 102.6 fever was nothing to take lightly.
Ethan seemed to respond well to the Motrin, as his demeanor completely changed about 20 minuets after he got it. He was laughing and smiling. We feel great about our experience there, as the nurses and doctors were wonderful. Our E.R. doc is friends with one of the fellows in the pulmonary group at Children's. He told us to say hello from him the next time we are there. Such a small world. We also told Ethan that if he really wanted to see medical personal, we could arrange a social visit and that he doesn't need to be so dramatic about teeth coming in! :)
We hope and pray that Ethan will get a good nights rest and really shake whatever is the problem.
While I was still nursing him, I had stashed away some breast milk with the thoughts that should Ethan get sick, a little bit of mama's milk would help out. I pulled out the rest of it and gave it to him before bed. Hopefully it will aid in his recovery.
On a totally different subject, the pattern of vomiting and yet gaining weight continues. Ethan was up big time and is now 21 lbs 1 oz. Our home nurse just kept repeating, "this doesn't make any sense" and "how did he gain any weight?" My answer was, "because it is Ethan and Ethan writes his own book!"
Craig and I are very tired at this point and deeply appreciate your prayers.
At the ER
I am writing this from the ER at our local hospital. After great advise, considering Ethan's medical history, we decided to go with an ER instead of Urgent Care.
So far, everything is looking fine. The motrin they gave Ethan is working well. His urine, x-ray and ears look fine. Despite the motrine, he still has a 101 temp though. We are waiting to hear back from the doctor about that. So far we have had a wonderful experience here and it looks like we will be able to go home soon. More to update then.
So far, everything is looking fine. The motrin they gave Ethan is working well. His urine, x-ray and ears look fine. Despite the motrine, he still has a 101 temp though. We are waiting to hear back from the doctor about that. So far we have had a wonderful experience here and it looks like we will be able to go home soon. More to update then.
Going in
We are going to take Ethan to an Urgent Care to see what is going on. While the doc at Children's said we don't need to come all the way down there, the fever level made her a little concerned. Please pray as we go and take Ethan to a place that we are not familiar with (meaning it is not Children's) and deal with doctors who are not familiar with Ethan.
Fever update
Ethan's fever seemed to stay at bay for a bit after his nap his afternoon (though it didn't fully break). Well, according to thermometer that our home nurse uses, it did break, but I don't trust that one. It is one of those temporal lobe ones and it came up as 97 degrees. However, right after she left I took his temperature using two methods and it was always above 100 degrees.
This afternoon the fever has returned with a vengeance. I am awaiting a call back from the doctor, as Ethan's fever has hit 102.6. Poor thing. He looks a little sad and getting a smile is a lot of work right now. Still no other symptoms though. Will keep you updated. Time to cuddle on the couch.
This afternoon the fever has returned with a vengeance. I am awaiting a call back from the doctor, as Ethan's fever has hit 102.6. Poor thing. He looks a little sad and getting a smile is a lot of work right now. Still no other symptoms though. Will keep you updated. Time to cuddle on the couch.
Fever
Yesterday afternoon I knew something was wrong when Ethan held onto my shirt as I tried to put him down. He is not a clingy baby at all and sure enough, he had a fever. Since he has no other symptoms (and we don't count the vomiting since it is a daily thing anyway) we are thinking it is one of two things: either his upper tooth is coming in or he is having a reaction to his MMR vaccine. Reactions normally don't appear until 7-12 days after the vaccine and his fever is right on schedule. It is also possible that both are bothering him. The fever has yet to break as of this morning, but I hope it will soon. I was up close to 10 times last night trying to get his alarms to stop going off. His fever is lower this morning and he did keep down his feeding from last night. He does not have any of the other signs of a reaction, including the rash, so that is good. Please pray for him today.
Thursday, May 14, 2009
Working hard
Below are some pictures. I am working on uploading three videos, but there seems to still be a problem with it. I will keep working on it! We are waiting for Ethan's speaking valve to arrive. We don't know if it will work because his trach is quite big for him, but it is worth the try. I would be amazing to hear him laugh! 
This week has lent itself to endless vomiting. Yesterday I went through every single piece of bedding and blankets that I had. Last time this happened, Ethan had a massive growth spurt, so maybe that is happening again. But, since Sunday night, there has been a steady stream of laundry. Plus, when he vomits, it isn't spit-up. Trust me, this is no spit-up! This is at least 30-40 mls per time. He may be getting an upper tooth as well.
We are working on sit to stand and crawling. He can pull himself up if he is sitting on a bench or higher surface. He has a tendency to lean back on his heals and point his feet out, so we are working on using toes. It just never ceases to amaze me how many things we have to teach him because he "missed" the natural progression by being in the hospital. For example, showing/teaching him how to go from sitting to crawling or from tummy to four-point to sitting. I watch other babies do it with such ease and yet with Ethan, it just takes time. Sometimes it can be hard to be patient and not compare him with other babies. Or to look and realize that we are so far from a particular goal. I know he will get there and he will do so when he is ready. I also know that he has had quite the first year of life!! I just try to remind myself how far he has come already.
He likes to honk the horn and "drive."
Getting ready to move
He was very proud of his standing.
If you look closely, you can see his two bottom teeth.
Craig and I were laughing so hard last night. Ethan would chew on his pickle and then raise it in the air as juice would run down his arm.
Then he did the same with the biscuit!
Tuesday, May 12, 2009
Pulmonary
I am so thankful for our nurse at the pulmonary clinic. She works directly for our doctor and I called Sunday night and left a lengthy (very lengthy) voicemail expressing my confusion with the pulmonary vs. ENT bronch situation. She is absolutely fantastic and got to the bottom of the situation right away. When she spoke with our pulmonary doctor, he said flat out that HE will be the one to perform the bronch in June. I was so happy to hear that as it was our desire as well. That means that there will be no general anesthesia, just a little sedation. So, yes, the only down side is that Ethan's circumcision would have to be a different day, but that is ok. Plus, I would rather that because the echo can take a bit of time and if he is under general anesthesia for that, it is much more than just a quick trip under for a circumcision. We are working on the date and hope to have one soon.
It never fails to amaze me how the Lord just figures it out. Ok, more like He always had it figured out, it just took us humans a little longer to get it. We need to keep remembering that He does have a plan and it is one that will be glory to Him. And it is one that is the best for Ethan.
It never fails to amaze me how the Lord just figures it out. Ok, more like He always had it figured out, it just took us humans a little longer to get it. We need to keep remembering that He does have a plan and it is one that will be glory to Him. And it is one that is the best for Ethan.
Monday, May 11, 2009
Feet up
For some reason, Ethan loves to sleep with his right leg in the air, leaning against the bumper. This is normally how he falls asleep and will remain this way for quite some time. The colorful sock is our attempt to outsmart a 13 month old.
You see, Ethan has figured out how to take his pulse ox off and does so with full knowledge that one of his sleepy eyed parents will have to come and visit him. We have watched him on the video monitor go through the steps of pulling off a sock (before, when it was just a regular sock) and then the pulse ox. At that point, he cranks he neck to watch the door to his room because he knows that one of us will have to come up. Very clever. But, Craig and I also like to think we are clever, so I put this very colorful sock that we were given by the lady I had run into at the mall. (Her son was Max.) Well, it has worked like a charm and he can't get it off...yet.
His new trick is rolling over in bed onto his tummy. We are very proud of him and it is a great achievement. However, one must now outsmart the 13month old because when he has a g-tube that is hooked to the side of the crib, along with other attachments, it can lead to a bad situation if he goes too far. How do we allow him to have this new found freedom, yet make sure he doesn't pull anything out, take anything off, etc?!? To be figurerd out hopefully soon. They are fun new challenges.
Saturday, May 9, 2009
Facing Forward
Ethan seemed to enjoy his new perspective while coming with me to do some grocery shopping today. I love the new car seat. One of the best parts is the way that the shoulder straps fit him. In the infant carrier, the straps would often rub against the "nose" on his trach when we would tighten the straps. This normally led to coughing, which led to him vomiting all over himself and the car seat. Now that the straps are made for older babies, they attach at more of a V and don't hit the "nose." Very helpful!
It was super easy to install.
Comfy enough to sleep
The BEST teething "toy" ever!
It was super easy to install.
Comfy enough to sleep
The BEST teething "toy" ever!
This is how I found Ethan the other morning. He loves to discover what is on the other side of the bumper. He was fast asleep. (And don't worry anyone, he is hooked up to monitors!) :)
Playing with his balloons.
Playing with his balloons.
Friday, May 8, 2009
Lots of updates
It has been a very busy week. Yesterday I took Ethan to his 12 month (which is now really a 13 month) well baby check. Afterwards I had to attend a work function down in Denver, so I dropped Ethan off with our friend Erin (a former NICU nurse) for a little play time. Craig went down to pick him up as I had to stay overnight and attend another function all day today. It worked out well and we are so thankful for our dear NICU nurse friends!
Ethan's check-up went really well. His pediatrician was extremely impressed at his development and placed him right about where he should be on his adjusted schedule. Ethan even is at the 50th percentile on his adjusted scale. (Though I don't know many babies who ever fall right on "track.") I had many questions on my list to go through with our doctor. I have to say we have one of the best pediatricians! And, since he has known Ethan from his NICU days, there are no gaps to fill.
Ethan received one vaccination. Normally at a year there are four recommended vaccinations, though our doctor's office tends to do two at 12 months and the other two at 15 months--just to break it up a little for those little bodies. There are two that I am not going to give Ethan (chicken pox and Hep A) so that means that he just got one yesterday and will receive one more in July. I love how they give shots. It is the same way Ethan was given them in the NICU (for the most part, post intubation). Ethan sits on my lap and I give him a "bear hug," hold his arms in mine, while the nurse gives the shot. I just think that he does so much better knowing that he is already being held. This is the same way he has always received his Synagis shots. I like it much better than holding him down on the exam table.
Our doctor still isn't concerned with the lack of eating. After all, Ethan is just around the 9/10 month mark, adjusted. And, in a few areas, he did place Ethan as "young" as 8.5 months. Regardless, he was simply amazed at Ethan's progress. Compared to typical preemie babies--meaning those who don't have open-heart surgery or the difficult breathing issues that Ethan has had--our doctor feels that Ethan is just improving immensely. We have been given the clearance to make Ethan hungry by waiting longer to feed him, in the attempts that hunger will help drive the desire to eat baby food. And, I am also able to put about an ounce or so of baby food down his g-tube to get his system used to digesting real food.
Ethan is now the proud owner of a forward facing car seat! Craig and I just finished putting the car seat in my car (well Craig installed and I took pictures). I can't wait to see Ethan in it tomorrow! His girth was getting to be difficult in the infant carrier and that position often led to vomiting, should he need to be suctioned while bucked in. He weighs 20 lbs 11 oz.
My only confusion from yesterday stems from the upcoming bronch in June. (I don't have a date set quite yet because we are going to coordinate with cardiology to get a good echo.) My pediatrician said that ENT has to perform any bronch in which there will be a determination for decannulation. But, whenever ENT does the bronch, it is done under general anesthesia as opposed to simple sedation that the pulmonary folks use. The only benefit to general anesthesia is that Ethan can have his circumcision at the same time, along with an echo. (I would rather Ethan have anything that is under general anesthesia while he has an airway, as I am quite frightened of intubation!) However, my preference, doctor wise, is for our pulmonary doctor to perform the bronch. There are many reasons why, but most of all it is because our pulmonary doctor has been with Ethan from the beginning (of our stay at Children's) and I feel that he just knows Ethan better. The ENT would be the same ENT from the past so she is aware of Ethan, but I still like pulmonary better. However, if ENT has to give the final "approval" then I don't want to have to subject Ethan to two procedures. Needless to say, I am trying to get to the bottom of the situation. Between the two groups I was also told two different stories as to how they will decannulate. One method is the step down method, while the other is to just take it out.
Once I get more information and a date, I will pass it along. Either way, I do like that we will be able to get a good echo since Ethan won't be moving. Now it is very hard to keep him still. He is always busy. He can rotate on his belly and does a sort of backwards army crawl. (Though I think he is still surprised when he goes anywhere.) He can't go far, as he does get tired. But, he will rest and then prop himself back up.
I do need to post more pictures soon, and I hope to do so this weekend. Thank you all for being so patient. Oh, and one last thing about our appointment was that we got to see Ethan's main NICU doctor. It was so exciting because he really hasn't seen Ethan since we left. Ethan gave him a BIG smile and laugh.
Ethan's check-up went really well. His pediatrician was extremely impressed at his development and placed him right about where he should be on his adjusted schedule. Ethan even is at the 50th percentile on his adjusted scale. (Though I don't know many babies who ever fall right on "track.") I had many questions on my list to go through with our doctor. I have to say we have one of the best pediatricians! And, since he has known Ethan from his NICU days, there are no gaps to fill.
Ethan received one vaccination. Normally at a year there are four recommended vaccinations, though our doctor's office tends to do two at 12 months and the other two at 15 months--just to break it up a little for those little bodies. There are two that I am not going to give Ethan (chicken pox and Hep A) so that means that he just got one yesterday and will receive one more in July. I love how they give shots. It is the same way Ethan was given them in the NICU (for the most part, post intubation). Ethan sits on my lap and I give him a "bear hug," hold his arms in mine, while the nurse gives the shot. I just think that he does so much better knowing that he is already being held. This is the same way he has always received his Synagis shots. I like it much better than holding him down on the exam table.
Our doctor still isn't concerned with the lack of eating. After all, Ethan is just around the 9/10 month mark, adjusted. And, in a few areas, he did place Ethan as "young" as 8.5 months. Regardless, he was simply amazed at Ethan's progress. Compared to typical preemie babies--meaning those who don't have open-heart surgery or the difficult breathing issues that Ethan has had--our doctor feels that Ethan is just improving immensely. We have been given the clearance to make Ethan hungry by waiting longer to feed him, in the attempts that hunger will help drive the desire to eat baby food. And, I am also able to put about an ounce or so of baby food down his g-tube to get his system used to digesting real food.
Ethan is now the proud owner of a forward facing car seat! Craig and I just finished putting the car seat in my car (well Craig installed and I took pictures). I can't wait to see Ethan in it tomorrow! His girth was getting to be difficult in the infant carrier and that position often led to vomiting, should he need to be suctioned while bucked in. He weighs 20 lbs 11 oz.
My only confusion from yesterday stems from the upcoming bronch in June. (I don't have a date set quite yet because we are going to coordinate with cardiology to get a good echo.) My pediatrician said that ENT has to perform any bronch in which there will be a determination for decannulation. But, whenever ENT does the bronch, it is done under general anesthesia as opposed to simple sedation that the pulmonary folks use. The only benefit to general anesthesia is that Ethan can have his circumcision at the same time, along with an echo. (I would rather Ethan have anything that is under general anesthesia while he has an airway, as I am quite frightened of intubation!) However, my preference, doctor wise, is for our pulmonary doctor to perform the bronch. There are many reasons why, but most of all it is because our pulmonary doctor has been with Ethan from the beginning (of our stay at Children's) and I feel that he just knows Ethan better. The ENT would be the same ENT from the past so she is aware of Ethan, but I still like pulmonary better. However, if ENT has to give the final "approval" then I don't want to have to subject Ethan to two procedures. Needless to say, I am trying to get to the bottom of the situation. Between the two groups I was also told two different stories as to how they will decannulate. One method is the step down method, while the other is to just take it out.
Once I get more information and a date, I will pass it along. Either way, I do like that we will be able to get a good echo since Ethan won't be moving. Now it is very hard to keep him still. He is always busy. He can rotate on his belly and does a sort of backwards army crawl. (Though I think he is still surprised when he goes anywhere.) He can't go far, as he does get tired. But, he will rest and then prop himself back up.
I do need to post more pictures soon, and I hope to do so this weekend. Thank you all for being so patient. Oh, and one last thing about our appointment was that we got to see Ethan's main NICU doctor. It was so exciting because he really hasn't seen Ethan since we left. Ethan gave him a BIG smile and laugh.
Monday, May 4, 2009
Welcome home!
It is nice to have Craig home again! Ethan and I went to the airport to greet him. There weren't many people waiting by the international flights, so that was nice. And, the timing was perfect. We got there, I got some coffee and we literally waited five minutes before Craig came out. It was nice not to wait very long.
I hope to get back to the regular routine now. The hardest part was the sleeping--or shall I say-- the lack thereof. It wasn't that Ethan's alarm would go off that often, but I was trying to sleep really light so that I would hear them if it did. When both of us are here, we feel that we can sleep regularly because one of us is bond to hear the alarm. But, with only one person, you go to bed at night not wanting to sleep too soundly for fear of not hearing the alarm. By the end of the week I was very tired and ready to sleep. (One of my favorite pastimes!)
Besides that, Ethan and I had a good week. He has improved greatly on his rolling over capabilities. For a long time now he has been able to roll from tummy to back, but, back to tummy is harder because he has to go over the blue tubing. He finally got it late last week, though at times I have to hold his foot to the floor to give him the leverage to get over the tubing. Now he also gets a bit frustrated if he tries and tries and just can't get over the tubing. As soon as he is on his tummy he pushes himself up as if he is ready to go! He is getting much stronger. Our PT feels that he should be on the move very soon. That is exciting. And, now he is more interested in toys, so that is an additional incentive. Although, he still prefers "talking" to anyone (and everyone) with his eyes and smile. Ethan is much more concerned with being in on the conversation!
I hope to get back to the regular routine now. The hardest part was the sleeping--or shall I say-- the lack thereof. It wasn't that Ethan's alarm would go off that often, but I was trying to sleep really light so that I would hear them if it did. When both of us are here, we feel that we can sleep regularly because one of us is bond to hear the alarm. But, with only one person, you go to bed at night not wanting to sleep too soundly for fear of not hearing the alarm. By the end of the week I was very tired and ready to sleep. (One of my favorite pastimes!)
Besides that, Ethan and I had a good week. He has improved greatly on his rolling over capabilities. For a long time now he has been able to roll from tummy to back, but, back to tummy is harder because he has to go over the blue tubing. He finally got it late last week, though at times I have to hold his foot to the floor to give him the leverage to get over the tubing. Now he also gets a bit frustrated if he tries and tries and just can't get over the tubing. As soon as he is on his tummy he pushes himself up as if he is ready to go! He is getting much stronger. Our PT feels that he should be on the move very soon. That is exciting. And, now he is more interested in toys, so that is an additional incentive. Although, he still prefers "talking" to anyone (and everyone) with his eyes and smile. Ethan is much more concerned with being in on the conversation!
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