Wednesday, November 18, 2009
Tuesday, November 17, 2009
Surgeries....Again.
Nathanial, Ethan, and Noah have been in speech and development therapy for almost a year now (wow!) and so it was time for their bi-annual hearing screens to go with their evaluations for their IFSP's. Nathanial passed his, but was right on the line of a need for a medical referral. The general consensus was, though, that he is hearing well enough to be at a learning level. So he was ultimately not referred on, which was good because he just got a new set of tubes a few months ago. Noah failed his hearing test massively - completely missing entire tones. He did not hear things no matter how loud they got. Ethan failed massively, also, but heard all the tones, just at very loud levels. So they were referred back to Dr. B for an evaluation.
When we went in, it was discovered that Noah's one tube fell completely out, the other was just barely in, and there was a lot of fluid behind both eardrums. Ethan's tubes were both in place, however they were plugged completely, so no longer working. He also had a lot of fluid behind both eardrums. We decided to go ahead with surgery for both of them.
They went in today and Noah knew when we got to the floor just exactly what was going to happen and started sobbing. I was able to distract him with a new blankey and teddy eventually. (I love the hospital that we go to for this - it is very progressive and very comforting for little people, especially considering it's in a town with a population of about 9,000 people.)
Ethan went first, which was a huge help because he doesn't have the propensity for drama that Noah does and he feeds off Noah. He got right in the little wagon and said "bye-bye" to me and was off. He was done in about an hour and Dr. B came in to chat with me. He had a ton of thick mucus behind both eardrums, which was drained and his adenoids were "huge." She feels his speech and hearing should be drastically improved now. His one tube was also fairly buried in his ear, so she had to do a little more "work" to get it out. She said we will probably see more bleeding from that ear than the other three ears and just to know that was why. As soon as they took Noah back, they came and got me for Ethan in the recovery room. He was saying miserably "mommy, mommy, mommy" over and over. Once I started to hold him, he did much better. We got in a lot of cuddle time while Noah was in surgery. Ethan also had/has some breathing congestion now, but they said that should clear up in a few days. He wasn't so bad that he needed a breathing treatment (like Nathanial) which was reassuring; they just heard a lot of "gunk" in his lungs afterward.
Noah went next and because Ethan went without much fanfare, Noah got in the wagon and said "bye-bye" to me, also. Noah had a ton of pus behind both eardrums, so was given iv antibiotics while also being given fluids (Ethan also received iv fluids). Dr B is not sure if he will ever get back some of the tones he totally missed (there was indication of damaged nerves from birth on for those tones), but they are "not tones he really needs." Interesting....
Noah had some dramatics coming out of anesthesia (as always) so one nurse came to cuddle with Ethan while I went back to recovery with Noah. He did better after I got back there and was able to hold him, but still had the little sobbing-breathing problem and would just break into more sobs on occasion.
Ethan drank right away and ate an entire popsicle, but Noah refused. He was not allowed to have the IV pulled until he drank 6 oz of juice and half a popsicle so they could see that he would indeed drink and not vomit when he got home. It took him a good 45 minutes to decide he wanted to go home bad enough to drink anything. As soon as he did, we were GONE.
This afternoon, both are rather hyper and not wanting to rest or nap at all. I believe they may be ramped up on pain killers, but they need to rest. They are recovering well, though, and really don't seem to be in any pain...by now we should be almost out of the effects of the pain meds they had at the hospital!
When we went in, it was discovered that Noah's one tube fell completely out, the other was just barely in, and there was a lot of fluid behind both eardrums. Ethan's tubes were both in place, however they were plugged completely, so no longer working. He also had a lot of fluid behind both eardrums. We decided to go ahead with surgery for both of them.
They went in today and Noah knew when we got to the floor just exactly what was going to happen and started sobbing. I was able to distract him with a new blankey and teddy eventually. (I love the hospital that we go to for this - it is very progressive and very comforting for little people, especially considering it's in a town with a population of about 9,000 people.)
Ethan went first, which was a huge help because he doesn't have the propensity for drama that Noah does and he feeds off Noah. He got right in the little wagon and said "bye-bye" to me and was off. He was done in about an hour and Dr. B came in to chat with me. He had a ton of thick mucus behind both eardrums, which was drained and his adenoids were "huge." She feels his speech and hearing should be drastically improved now. His one tube was also fairly buried in his ear, so she had to do a little more "work" to get it out. She said we will probably see more bleeding from that ear than the other three ears and just to know that was why. As soon as they took Noah back, they came and got me for Ethan in the recovery room. He was saying miserably "mommy, mommy, mommy" over and over. Once I started to hold him, he did much better. We got in a lot of cuddle time while Noah was in surgery. Ethan also had/has some breathing congestion now, but they said that should clear up in a few days. He wasn't so bad that he needed a breathing treatment (like Nathanial) which was reassuring; they just heard a lot of "gunk" in his lungs afterward.
Noah went next and because Ethan went without much fanfare, Noah got in the wagon and said "bye-bye" to me, also. Noah had a ton of pus behind both eardrums, so was given iv antibiotics while also being given fluids (Ethan also received iv fluids). Dr B is not sure if he will ever get back some of the tones he totally missed (there was indication of damaged nerves from birth on for those tones), but they are "not tones he really needs." Interesting....
Noah had some dramatics coming out of anesthesia (as always) so one nurse came to cuddle with Ethan while I went back to recovery with Noah. He did better after I got back there and was able to hold him, but still had the little sobbing-breathing problem and would just break into more sobs on occasion.
Ethan drank right away and ate an entire popsicle, but Noah refused. He was not allowed to have the IV pulled until he drank 6 oz of juice and half a popsicle so they could see that he would indeed drink and not vomit when he got home. It took him a good 45 minutes to decide he wanted to go home bad enough to drink anything. As soon as he did, we were GONE.
This afternoon, both are rather hyper and not wanting to rest or nap at all. I believe they may be ramped up on pain killers, but they need to rest. They are recovering well, though, and really don't seem to be in any pain...by now we should be almost out of the effects of the pain meds they had at the hospital!
Friday, November 13, 2009
Hannah's Gaining!!
Hannah had her follow up today in Iowa City with Dr. V and Dr. A. It went AWESOME!!! I have been feeling very defeated and frustrated because it appeared her weight gain was very slow. She has been gaining three ounces a week every week since she was discharged and then she gained eight last week. She gained four ounces this week, according to their scale (it's difficult to say if this is accurate because it is best that she is weighed on the same scale every time at the same time of day in the same place, etc., etc.). So I told the nurse my frustrations. I felt that it should be more, as she is still eating table food, drinking calorie enhanced milk, nursing, and being tube fed. Dr. V came in and was thrilled with her gain. She charted it out for me (below) and said it was an awesome gain overall! Yay!! Five grams per day is maintenance and ten grams per day is weight gain. She was hoping/expecting Hannah G to gain ten grams per day....Hannah is really gaining eighteen grams per day on average!!! WooHoo!!! It made me feel so much better to see it all plotted out. Plus, not only is she gaining, but I'll explain the charts below which were all very encouraging.
Because she has gained weight, we are also going to increase her Pediasure feedings overnight. Now she will be getting 12 ounces over a ten hour period, which will continue to push her weight up, which in turn pushes her length up. Ultimately, she needs her length to be between 30-50th percentile and then her weight to match that somewhere on the chart. Baby steps - and we are getting there quicker than I prayed for!!
Miss Hannah G today - at almost fourteen months {in a few days!}.
The chart above is what Hannah had been doing. As you can see, she dropped drastically, then leveled out. And you are seeing correctly, at 12 months, she was below the number "12." Then, today, at almost 14 months, there was a huge uptake again!!
Above is Hannah's head circumference...from hospitalization on October 9 to today, November 13 (see the increase???).
This is Hannah's length - again, hospitalization to today...another increase!
One of the more exciting ones....Hannah's weight. See how much closer she's getting to the bottom of the chart?!?!?!!! We're almost at 3rd percentile!!! The first "X" is her birth weight percentile for comparison...that's the percentile mark we're shooting for to get her off the tube.
The best one by far....her weight to length comparison. She is now on the chart!! Which means that, proportionately, she is doing super!!! Finally they are matching up somewhere on a chart!!!!
Because she has gained weight, we are also going to increase her Pediasure feedings overnight. Now she will be getting 12 ounces over a ten hour period, which will continue to push her weight up, which in turn pushes her length up. Ultimately, she needs her length to be between 30-50th percentile and then her weight to match that somewhere on the chart. Baby steps - and we are getting there quicker than I prayed for!!
Miss Hannah G today - at almost fourteen months {in a few days!}.
The chart above is what Hannah had been doing. As you can see, she dropped drastically, then leveled out. And you are seeing correctly, at 12 months, she was below the number "12." Then, today, at almost 14 months, there was a huge uptake again!!
Above is Hannah's head circumference...from hospitalization on October 9 to today, November 13 (see the increase???).
This is Hannah's length - again, hospitalization to today...another increase!
One of the more exciting ones....Hannah's weight. See how much closer she's getting to the bottom of the chart?!?!?!!! We're almost at 3rd percentile!!! The first "X" is her birth weight percentile for comparison...that's the percentile mark we're shooting for to get her off the tube.
The best one by far....her weight to length comparison. She is now on the chart!! Which means that, proportionately, she is doing super!!! Finally they are matching up somewhere on a chart!!!!
Wednesday, October 21, 2009
Wordless Wednesday - October Fun!
So far this month, we've had some attitude....
And we've had some mechanical fun...
And we've decided we don't like our picture taken; but will smile once...
When our sister gets to wear Baby Legs, so do we!!(even if that means sometimes they are {very} pink)
We like to be matchy-matchy...
We like to be matchy-matchy...We love the fall and playing together!
Monday, October 19, 2009
Hannah and Austin and H1N1
Sometimes it seems life gets going and I forget to update...or I can't find two minutes in which to do an update. Last week was a crazy busy week.
Hannah has had her NG tube for over a week now and she is starting to adjust to it. She pulls it regularly at night, but she leaves it be during the day. She no longer has to use her arm restraints during the day and that is a huge relief. We got a lot of looks over that one, but it was the only way to keep the tube in! She started getting smart at night and she will wait until I am out of the room for a while and then remove her arm restraints. She does still wear them at night because otherwise she will pull the tube out. Most of the time she leaves the tube be, even without restraints on, during the night, but if she wakes up in the morning and is left alone, she will pull it. And she's getting very quiet in the morning, so you are never quite sure when she's awake and when she's asleep. My solution to that has been to get her up and out of her room as soon as I wake up. A few nights ago, she got very smart and we still can't figure out how she did it. She pulled her tube out - with both arm restraints on. I have no idea how she managed, but she did. The next night, she pulled it out, with restraints on, at the beginning of her feed. I went in like I usually do and checked her three times. I just checked to be sure it was still attached to her cheek, because she was kind of laying on it. She pulled it and I had no idea. I even went in and checked it again, plus then checked it when I disconnected everything and flushed her line. Steve woke up and went in to get her and her hair was matted to her head and her jammies and sheets were full of Pediasure. I now turn her over when I go in to check on her to be sure it is still in place.
Other than the fights over leaving her tube in place at night, she's doing pretty well. The triplets have not once attempted to pull it out. I am so pleased with that! Noah was checking her out the very first day and I told him "No, that makes owies for Hannah" and he has since left her completely alone. He even told Nathanial "no...owies!" one day just for looking at Hannah! It is so nice to not have that worry!
Austin was home all last week with influenza A. He said he was sick on Monday, but he's been having a lot of anxiety again lately so I assumed it was that sort of sick. I left him be, but he didn't really perk right back up around 9 like he usually does. Monday night, he started sounding awful and went to bed by 6:30! Tuesday he woke up and was just miserable and I knew he couldn't go to school again. So I took him in to the doctor, figuring it was just a cold but I knew we needed an excuse slip if he was going to miss two days. And it wasn't...he tested positive for Influenza A. We've been told that they do not run the H1N1 test because it is so very expensive but that it is too early for the seasonal flu, so we can be relatively positive he had H1N1. He was immediately put on Tamaflu, as was the rest of the family so that we could avoid anyone else getting it.
On Wednesday, I took him back in because he was having a lot of trouble breathing and said it felt like someone was sitting on his chest. The doctor he saw then said to just increase his inhaler use and add Mucinex. I was a little frustrated because he didn't believe me at first when I told him he had tested positive for the flu; then he suddenly thought maybe he should be tested for the flu; then after about 10 minutes he finally understood and looked in his chart. He didn't understand my concerns about his breathing, either, but Austin has asthma, a heart condition, and a neaurological disorder...all of which put him at a much greater risk for complications from the flu. Very frustrating. He did seem a bit perkier for about an hour that afternoon. Thursday he had a few hours of perky-ness and he was back to fighting with me by Friday afternoon. He probably could have gone back on Friday, but I wasn't sure and just figured better to be safe than sorry. Today is his first full day back and he had a ton of homework over the weekend to catch up on. Thankfully, he's a strong student and in some very un-challenging classes so he won't take much to keep up.
Noah, Aidan, Hannah, and I all got colds out of the deal, but none of us came near what Austin had and I think Tamaflu helped keep it not so bad for us! Prayerfully, we will now have healthy winter season!
Hannah has had her NG tube for over a week now and she is starting to adjust to it. She pulls it regularly at night, but she leaves it be during the day. She no longer has to use her arm restraints during the day and that is a huge relief. We got a lot of looks over that one, but it was the only way to keep the tube in! She started getting smart at night and she will wait until I am out of the room for a while and then remove her arm restraints. She does still wear them at night because otherwise she will pull the tube out. Most of the time she leaves the tube be, even without restraints on, during the night, but if she wakes up in the morning and is left alone, she will pull it. And she's getting very quiet in the morning, so you are never quite sure when she's awake and when she's asleep. My solution to that has been to get her up and out of her room as soon as I wake up. A few nights ago, she got very smart and we still can't figure out how she did it. She pulled her tube out - with both arm restraints on. I have no idea how she managed, but she did. The next night, she pulled it out, with restraints on, at the beginning of her feed. I went in like I usually do and checked her three times. I just checked to be sure it was still attached to her cheek, because she was kind of laying on it. She pulled it and I had no idea. I even went in and checked it again, plus then checked it when I disconnected everything and flushed her line. Steve woke up and went in to get her and her hair was matted to her head and her jammies and sheets were full of Pediasure. I now turn her over when I go in to check on her to be sure it is still in place.
Other than the fights over leaving her tube in place at night, she's doing pretty well. The triplets have not once attempted to pull it out. I am so pleased with that! Noah was checking her out the very first day and I told him "No, that makes owies for Hannah" and he has since left her completely alone. He even told Nathanial "no...owies!" one day just for looking at Hannah! It is so nice to not have that worry!
Austin was home all last week with influenza A. He said he was sick on Monday, but he's been having a lot of anxiety again lately so I assumed it was that sort of sick. I left him be, but he didn't really perk right back up around 9 like he usually does. Monday night, he started sounding awful and went to bed by 6:30! Tuesday he woke up and was just miserable and I knew he couldn't go to school again. So I took him in to the doctor, figuring it was just a cold but I knew we needed an excuse slip if he was going to miss two days. And it wasn't...he tested positive for Influenza A. We've been told that they do not run the H1N1 test because it is so very expensive but that it is too early for the seasonal flu, so we can be relatively positive he had H1N1. He was immediately put on Tamaflu, as was the rest of the family so that we could avoid anyone else getting it.
On Wednesday, I took him back in because he was having a lot of trouble breathing and said it felt like someone was sitting on his chest. The doctor he saw then said to just increase his inhaler use and add Mucinex. I was a little frustrated because he didn't believe me at first when I told him he had tested positive for the flu; then he suddenly thought maybe he should be tested for the flu; then after about 10 minutes he finally understood and looked in his chart. He didn't understand my concerns about his breathing, either, but Austin has asthma, a heart condition, and a neaurological disorder...all of which put him at a much greater risk for complications from the flu. Very frustrating. He did seem a bit perkier for about an hour that afternoon. Thursday he had a few hours of perky-ness and he was back to fighting with me by Friday afternoon. He probably could have gone back on Friday, but I wasn't sure and just figured better to be safe than sorry. Today is his first full day back and he had a ton of homework over the weekend to catch up on. Thankfully, he's a strong student and in some very un-challenging classes so he won't take much to keep up.
Noah, Aidan, Hannah, and I all got colds out of the deal, but none of us came near what Austin had and I think Tamaflu helped keep it not so bad for us! Prayerfully, we will now have healthy winter season!
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