The next two weeks are going to be busy ones for the girls and I. Here's the run down:
Tues - Physical Therapy eval for Abby
Wed - Speech eval for both girls 10am and Feeding therapy at 11:15 (both at home)
Thurs - Play therapy (home)
Fri - Pulmonary appt. for both and follow-up chest X-ray for Natalie
next Mon - ear appt for both with hearing tests
Tues - Two year appt. with ped
Wed - regular feeding therapy
Thurs - regular play therapy
To be honest, the appointment I am most concerned about is the first one - the PT eval. One of the things they are evaluating is whether or not Abby needs braces on her legs to address the fact that she has starting turning her foot in when she runs or walks fast. It's not an aesthetics thing for me at all. It's more the crashing and burning of a fantasy.
The reality has been that, so far, the girls have largely escaped any real consequences and affects of their prematurity. Of course, feeding has been an issue, but even that respect, we have managed to avoid GI's and g-tubes. And, despite their very small size, their cognitive development seems to have remained unaffected.
Recently, however, we have started seeing gaps in our nearly perfect situation. When we started with their developmental play therapy, I actually thought they really didn't need it, but I figured it couldn't hurt and every little bit helps. In the past few months, however, I have seen areas in which they struggle. Our therapist, Elizabeth, (whom I adore) has also mentioned areas in which they seem behind. She has also commented on some currently minor sensory integration adaptations, such as Abby often sticking her tongue out while playing or concentrating on something (and unfortunately often when we are trying to get a picture:-)). I had previously worked with a child with Sensory Integration Disorder, have read some literature on the subject and have a few issues of my own, so I had been on the lookout for systems. I had already noticed that both dislike the feel of the grass on their feet (especially Abby) and also dislike it when their hands get dirty (again, especially Abby). Generally, these aren't terribly unusual, but every little thing makes me worry about more problems down the line.
Their recent developmental evals at SICC were also not what I expected. They tested at their adjusted age for everything but speech. Of course, in general, that's amazing for 26 week preemies. But, I was still surprised. I really expected them to do better in some areas. Maybe that's just my mommy pride, but they really do seem on track for their actual age in many areas. Again, I think that some things weren't tested, like receptive language, but, even I can admit there were things they struggled with. On the same day came the initial PT eval that suggested Abby needed to see PT for the braces eval. That was a bit of a surprise. Not the need for PT, or even that she was turning her foot in (I actually asked them to look at her and pointed it out), but the word "braces" kind-of threw me for a loop.
Again, it's not the physical presence of the braces, but the fact that I can envision Abby's response to them. I'm just so afraid she's going to cry and cry and try to take them off. And I won't be able to help her. I'll have to make her wear them while she cries and calls my name. The idea just breaks my heart.
Maybe I'm making it out to be worse than it is. I hope so. It just makes me sad that I will have to make Abby sad. Other than periodic immunizations and a chest x-ray, we haven't had to really put the girls through anything that bad since the ng tubes. And, that experience was just awful.
The other appointments are to address some other possible issues. Pulmonary is to test their lung capacity and see if they have residual lung disease. The ear appointments are to check their hearing (not worried about that) and to see if they are holding fluid in their ears and might need tubes. Their reoccurring ear infections necessitated that appointment. I'm not loving the idea of tubes either, but for some reason I'm feeling like their ears will be okay.
I feel a little guilty for worrying about what are really pretty minor issues. I really should be just overjoyed and grateful for how healthy they are. And I am. It's just that now our fantasy world has collided with reality and it's not nearly as fun.
Saturday, May 30, 2009
Amazing weigh-In
Ben weighed the girls tonight. Abby weighed in at 20#13oz and Natalie showed her whose boss at 20# 14oz.
Woo-Hoo!
Woo-Hoo!
Friday, May 29, 2009
Ahhh, Our First Throw-up
Little Abby is responsible for our first throw-up in 9 days. BUT, it came after she had about 12 oz of milk within a 30 minute period. I think she just drank too much. So, really, I don't think it should count.
Tuesday, May 26, 2009
A Little Time Alone
Natalie and Abby are away at Ya-Ya's Feeding Boot-Camp. We took them down Saturday and I will go to get them Wednesday. Ben and I are enjoying a little baby-free time. We had grand plans to do all kinds of cleaning, but mostly we've just been hanging out. We did clean up a little outside and mow the grass. I've also cleaned the girls' room and my office and Ben shampooed the carpets in the living room, hall and baby's room. So, I guess we weren't completely lazy.
In other news, I weighed the girls before they left and I am so excited. Natalie was 20 pounds 3oz and Abby 20 pounds 8 oz. We have a 8.5 oz gain for Natalie in about 72 hours. Abby gained 8 oz. Also, no one has thrown up since Natalie did Wednesday morning.
I can not tell you how absolutely fantastic this is. Half a pound in THREE days! That's unbelieveable. UNBELIEVABLE!!! I can't wait to see how big they are when they come back from Ya-Ya's. Abby might even hit 21 pounds.
I just can't believe that the solution may have been this simple - a milk protein intolerance. Oh, the pounds they could have gained....
In other news, I weighed the girls before they left and I am so excited. Natalie was 20 pounds 3oz and Abby 20 pounds 8 oz. We have a 8.5 oz gain for Natalie in about 72 hours. Abby gained 8 oz. Also, no one has thrown up since Natalie did Wednesday morning.
I can not tell you how absolutely fantastic this is. Half a pound in THREE days! That's unbelieveable. UNBELIEVABLE!!! I can't wait to see how big they are when they come back from Ya-Ya's. Abby might even hit 21 pounds.
I just can't believe that the solution may have been this simple - a milk protein intolerance. Oh, the pounds they could have gained....
Friday, May 22, 2009
Kinda makes you wanna go hmmmmmm....
So, day three of diary-free. Very interesting. We are using soy milk and adding olive oil and a scoop of duocal. It's hard to know exactly, but it's probably about 200-250 calories per 8 ounces, depending on how much olive oil we add.
Fact One: No one has thrown up since Natalie did Wednesday morning. Not even when they were crying. Coincidence? Hmmmmm.
Fact Two: Their appetites seem have increased significantly. Last night, (well, Friday am), I fed the girls about 1am. Abby ate about 5 or 6 oz. At 3am she woke up crying. Ben fed her 5 more oz. At 5:30, Natalie woke up crying. So, I fed her. (7oz I think). Since I was up, I also fed Abby again, who had awakened and was crying anyway. She ate 7 oz. At 10am I woke them and fed them. Abby ate 7 oz again. So, in a 9 hour period, Abby had about 24 oz of milk. TWENTY FOUR OUNCES!!!!! in 9 hours!!! That's just crazy. Coincidence? Are they simply recovering from their sickness and making up for the lost weight? Hmmmmmmm.
Fact three: They are eating solids better too. In particular, their newest food: oats and honey granola bars aka baby crack. They can't get enough of these things. One bar has 95 calories. They are eating about two a day. This evening, we had them in their chairs and there was only about half of one bar left, and Abby had it. I took it and broke it in half to give some to Natalie. Abby had a fit. Even when I gave her back her half, she wasn't happy. She wanted it ALL. Since it was the last one, we packed up and went to Target to get more (and a few other things). As soon as they saw the boxes they started pointing and grunting to have one. Once they have one, they chew away, happy as larks.
They have also eaten other food: soy yogurt (only vanilla - NOT peach), chicken nuggets, french fries, and Abby seemed to enjoy the hotdog she had tonight. Overwhelmingly though, granola bars are the favorite.
Fact 4: I could be imaging things, but I think their rash is getting better, especially on their arms.
Fact 5: I weighed Natalie this morning. She has gained 5.5 ounces since Wednesday morning.
Conclusion:
The only thing I can figure is that they are able to process the soy better than the milk and their stomachs are actually emptying faster ergo they are more hungry. That's the only explanation I have for Abby being physically capable of consuming 24 ounces without throwing up. Before, they could go all night without eating, throw up and you could see all the partially digested milk - 8 hours after eating.
We are pretty excited that we may have found a solution to their vomiting and slow weight gain. It's rather mind-blowing that all along it may have been as simple as an intolerance to milk protein. That brings me to my rant...why, oh, why, oh why, didn't this occur to one of the dozen doctors we have seen in the past two years???? One time, while they were still in the NICU, it was discussed and we went dairy free for about a week. They wanted to see if they would eat more. They didn't and it was abandoned. So far, all their throwing up has been blamed on reflux - which is apparently the catch-all for any unexplained vomiting. It's amazing that it has not occured to anyone before now.
I have to give credit where credit is due - since it never occured to me either. This has all been the idea of my sister. One of her best friend's newborn baby was crying for hours on end (blamed on colic and reflux). They did a little research, switched him to a non-dairy formula and *snap* - a completely different baby. So, once again, thanks to my sister, we may have been saved.
It makes me a little angry when I really think about where Natalie and Abby could be had we figured this out a year ago. They could weigh pounds and pounds more. They would be stronger and mabe even further ahead in their development in speech and other areas. They might have even been off the special pediatric drinks and just on regular soy milk. Maybe we still wouldn't be doing 4 bottles a day - for two year olds.
At least it looks like we may have some kind of solution to our ongoing problem. We can only hope this isn't a fluke and is the real beginning of the girls doing much, much better.
Fact One: No one has thrown up since Natalie did Wednesday morning. Not even when they were crying. Coincidence? Hmmmmm.
Fact Two: Their appetites seem have increased significantly. Last night, (well, Friday am), I fed the girls about 1am. Abby ate about 5 or 6 oz. At 3am she woke up crying. Ben fed her 5 more oz. At 5:30, Natalie woke up crying. So, I fed her. (7oz I think). Since I was up, I also fed Abby again, who had awakened and was crying anyway. She ate 7 oz. At 10am I woke them and fed them. Abby ate 7 oz again. So, in a 9 hour period, Abby had about 24 oz of milk. TWENTY FOUR OUNCES!!!!! in 9 hours!!! That's just crazy. Coincidence? Are they simply recovering from their sickness and making up for the lost weight? Hmmmmmmm.
Fact three: They are eating solids better too. In particular, their newest food: oats and honey granola bars aka baby crack. They can't get enough of these things. One bar has 95 calories. They are eating about two a day. This evening, we had them in their chairs and there was only about half of one bar left, and Abby had it. I took it and broke it in half to give some to Natalie. Abby had a fit. Even when I gave her back her half, she wasn't happy. She wanted it ALL. Since it was the last one, we packed up and went to Target to get more (and a few other things). As soon as they saw the boxes they started pointing and grunting to have one. Once they have one, they chew away, happy as larks.
They have also eaten other food: soy yogurt (only vanilla - NOT peach), chicken nuggets, french fries, and Abby seemed to enjoy the hotdog she had tonight. Overwhelmingly though, granola bars are the favorite.
Fact 4: I could be imaging things, but I think their rash is getting better, especially on their arms.
Fact 5: I weighed Natalie this morning. She has gained 5.5 ounces since Wednesday morning.
Conclusion:
The only thing I can figure is that they are able to process the soy better than the milk and their stomachs are actually emptying faster ergo they are more hungry. That's the only explanation I have for Abby being physically capable of consuming 24 ounces without throwing up. Before, they could go all night without eating, throw up and you could see all the partially digested milk - 8 hours after eating.
We are pretty excited that we may have found a solution to their vomiting and slow weight gain. It's rather mind-blowing that all along it may have been as simple as an intolerance to milk protein. That brings me to my rant...why, oh, why, oh why, didn't this occur to one of the dozen doctors we have seen in the past two years???? One time, while they were still in the NICU, it was discussed and we went dairy free for about a week. They wanted to see if they would eat more. They didn't and it was abandoned. So far, all their throwing up has been blamed on reflux - which is apparently the catch-all for any unexplained vomiting. It's amazing that it has not occured to anyone before now.
I have to give credit where credit is due - since it never occured to me either. This has all been the idea of my sister. One of her best friend's newborn baby was crying for hours on end (blamed on colic and reflux). They did a little research, switched him to a non-dairy formula and *snap* - a completely different baby. So, once again, thanks to my sister, we may have been saved.
It makes me a little angry when I really think about where Natalie and Abby could be had we figured this out a year ago. They could weigh pounds and pounds more. They would be stronger and mabe even further ahead in their development in speech and other areas. They might have even been off the special pediatric drinks and just on regular soy milk. Maybe we still wouldn't be doing 4 bottles a day - for two year olds.
At least it looks like we may have some kind of solution to our ongoing problem. We can only hope this isn't a fluke and is the real beginning of the girls doing much, much better.
Wednesday, May 20, 2009
The Battle of the (non)Bulge and the G-word
It's worse than I thought.
I weighed the girls today now that they seemed to have recovered (never mind that Natalie threw up AGAIN this morning in her crib.) Abby weighed in at 20lbs even - a loss of 12.5 oz in two weeks. Natalie was only 19lbs 10.5 oz. She was down 12 oz as well. She looks it too. Natalie looks so puny - and she seems unbalanced - like she's almost too weak to stand up. It's pitiful. Today is actually the first day since Friday that she is herself again.
My sister was here this weekend and after much discussion, and drawing on her vast experience with hundreds of babies through her sleep training business, we are now wondering if they have a mild milk protein allergy. Nothing dangerous, but just enough to make them throw up and have trouble digesting their pedisure. They have some signs: the vomiting and an ever increasing ezema-like rash on their thighs, arms, and back. So, we are trying a week of no-diary to see what happens. We are trying soy milk with olive oil plus stepping up the solids. We'll just have to see if it helps with the vomiting at all.
Since Natalie had been sick since Friday and was STILL throwing up, I took her to the doctor yesterday. As I expected, there was nothing visibly wrong with her - no ear infection, for instance. But, the ped was very concerned. We happened to see our regular ped so she knows them well. She threw around words like "failure to thrive", "potentional delays in developlement" and my favorite, "g-tube". She thinks we should consider it again so they can get the calories they need, which apparently is about 1200 a day. Honestly, I don't know how any kid gets 1200 a day. ADULTS can live on 1200 calories a day. They would have to drink 40 ounces of pedisure to reach 1200 calories. That is NEVER going to happen.
On the bright side, they seem quite hungry and interested in eating. Yesterday morning, I picked Abby up and she said, "eat, eat". I responded, "yes, mommy is going to fix you breakfast." I then set her down and she started howling. I picked her back up and asked her what was wrong. I said "tell mommy what you want..." Through her tears she said, "eat, eat". She wanted to eat right then. So, I put her in her chair, and she was very happy. I have also discovered they love granola bars - the oats and honey crunchy kind. At 190 calories for 2 bars, they are a great find. The girls have already each had one bar today.
Oh - I also just want to draw your attention to how Abby used her words to express what she wanted (eat, eat). I'm pretty excited about that, too.
So, the plan now is to try the diary-free route and feed them as much as possible. I am also going to check into have some allergy testing done. And before we even approach the g-tube route, we will have some other tests done, like a gastro-emptying test, and look into some medication that improve motility (how fast the stomach empties.)
That's the news for now - Abby and Natalie are head butting each other and I should probably pay attention...
I weighed the girls today now that they seemed to have recovered (never mind that Natalie threw up AGAIN this morning in her crib.) Abby weighed in at 20lbs even - a loss of 12.5 oz in two weeks. Natalie was only 19lbs 10.5 oz. She was down 12 oz as well. She looks it too. Natalie looks so puny - and she seems unbalanced - like she's almost too weak to stand up. It's pitiful. Today is actually the first day since Friday that she is herself again.
My sister was here this weekend and after much discussion, and drawing on her vast experience with hundreds of babies through her sleep training business, we are now wondering if they have a mild milk protein allergy. Nothing dangerous, but just enough to make them throw up and have trouble digesting their pedisure. They have some signs: the vomiting and an ever increasing ezema-like rash on their thighs, arms, and back. So, we are trying a week of no-diary to see what happens. We are trying soy milk with olive oil plus stepping up the solids. We'll just have to see if it helps with the vomiting at all.
Since Natalie had been sick since Friday and was STILL throwing up, I took her to the doctor yesterday. As I expected, there was nothing visibly wrong with her - no ear infection, for instance. But, the ped was very concerned. We happened to see our regular ped so she knows them well. She threw around words like "failure to thrive", "potentional delays in developlement" and my favorite, "g-tube". She thinks we should consider it again so they can get the calories they need, which apparently is about 1200 a day. Honestly, I don't know how any kid gets 1200 a day. ADULTS can live on 1200 calories a day. They would have to drink 40 ounces of pedisure to reach 1200 calories. That is NEVER going to happen.
On the bright side, they seem quite hungry and interested in eating. Yesterday morning, I picked Abby up and she said, "eat, eat". I responded, "yes, mommy is going to fix you breakfast." I then set her down and she started howling. I picked her back up and asked her what was wrong. I said "tell mommy what you want..." Through her tears she said, "eat, eat". She wanted to eat right then. So, I put her in her chair, and she was very happy. I have also discovered they love granola bars - the oats and honey crunchy kind. At 190 calories for 2 bars, they are a great find. The girls have already each had one bar today.
Oh - I also just want to draw your attention to how Abby used her words to express what she wanted (eat, eat). I'm pretty excited about that, too.
So, the plan now is to try the diary-free route and feed them as much as possible. I am also going to check into have some allergy testing done. And before we even approach the g-tube route, we will have some other tests done, like a gastro-emptying test, and look into some medication that improve motility (how fast the stomach empties.)
That's the news for now - Abby and Natalie are head butting each other and I should probably pay attention...
Sunday, May 17, 2009
Birthday Bust
Well, Friday was the girls 2nd birthday. Compared to last year's hoopla, this year was pretty anti-climatic and well, rather disappointing.We had good intentions and big plans. Ben took the day off and Auntie was due in Thursday night. We were headed to the zoo in Asheboro and then to my mom's for a joint birthday bash. (Mema's birthday is May 18th and my sister's May 26.)
Things started looking iffy on Wednesday when Abby suddenly took ill with runny poops and throwing up. She was also running a fever and was basically pathetic. She slept most of Wednesday and Thursday. By late Thursday, we were pretty certain the Zoo was out, but we thought we might salvage the trip to mom's if Abby was feeling better. Our biggest concern was that Friday would be about the same time Natalie might start getting sick. We were going to have to wait anyway since my sister, who realized around noon that the flight she thought left at 9:30PM actually left at 9:30 AM, wouldn't arrive until 10:30 Thursday morning, so we decided to wait and see.
Things were looking better Friday morning. Abby was more herself and things seemed promising. I took the girls with me to pick up Auntie while Ben packed some things at home. On the way, I stopped to get biscuits and sweet tea at Bojangles. While in the drive through line, Natalie threw up everywhere.
After cleaning her up and finally picking up Auntie, we were home and tried to decide what to do. We finally decided to give it a day, see how everyone was the next day, and
go then if we could.I was pretty bummed by this time. The girls were not themselves and their birthday was not shaping up to much of anything at all. I decided we should have a little birthday tea party (like Daddy did last year) and Ben picked up a cake while the girls napped. Our little party was cut short when Natalie threw up the banana she was eating. (I have it in pictures and on video,but decided to spare you all).
I lost count, but Natalie threw up at least 8 times between the Bojangles trip and midnight. It was so pitiful too. She was so hungry and was crying and begging for any cups or bottles she saw. She would drink like she was starving and before she was even through, she'd throw up. We tried to limit her to an ounce at a time, and then she would cry and reach for the cup. It was awful.
In the end, on Saturday, we decided Natalie should stay home (by now she was also running a fever, lethargic, and generally pitiful). I wasn't feeling so great myself, so Auntie took Abby and headed to mom's herself. We've heard since then that Abby has thrown up twice, so I'm not sure how good an idea that turned out to be. But, she no longer had a fever and seemed to be feeling okay so hopefully she is okay.
All in all, it was a pretty yucky birthday. We didn't even get a decent picture of the girls together on their birthday. I'm very sad about that. We never even pulled out the little cake Ben bought either. The only good thing is that the girls are too young to realize it's their birthday or care that it completely bombed.
I've decided th
at we will just have to play birthday one day next week - or maybe Saturday. We'll have a little cake party, sing happy birthday and maybe hit the Museum of Life and Science and see the bears. We'll just have to call it, "2nd Birthday, Part II".I did take pictures of the girls at 4:09pm and 4:10pm - the times they were born. They were sleeping so they aren't very interesting, but they are kind-of cute - especially Abby with her little bum up in the air:-)
I need to do my whole "emotional mommy" post, so I'll get to that later. I'm a little too bummed to do it right now. 
Even so, I do want to wish Natalie and Abby a very Happy 2nd Birthday. They are truly the joys of our lives and every day is a blessing with them. Ben and I are so incredibly lucky to have our girls.Happy Birthday Babies!
Thursday, May 14, 2009
Bring Out the Party Dresses!
On May 1, we attended our first official birthday party (for another child). Our dear friend, Bean (a nickname), was turning 6 the next day. Her part
y was a wonderful affair in her dad's back yard complete with cardboard house painting, trampoline jumping, a water balloon toss and the most sturdy pinata I have ever seen. (It took 3 rounds of about 16 kids wacking it with a metal bat before it cracked!)Despite my personal inclinations against anything dres
sy, it was actually really fun dressing the girls in their "party" dresses. My mom bought these adorable dresses and I couldn't think of any better place to wear them. I've started avoiding dressing them the same anymore because they look SO much a like now, I have a hard time telling them apart in pictures. So, for my sanity - and your - I fixed their hair differently. Natalie has the two little pig tails and Abby the pony tail an
d blue bow.Most of the games were geared to the older kids, but Natalie and Abby had a great time just wandering around. Abby found a Curious George monkey in the house and attached herself to it. She car
ried it around most of the party. It was really funny to me since we were at Steve's house 3 times a week and she had never paid much attention to the monkey. Maybe she felt like she needed a date for the party!I took some great pictures of the girls. It was a beautiful day and the girls looked beautiful (if I may say
so:-) Enjoy!Natalie
and Abby
Tuesday, May 12, 2009
If you have prayers to spare...
Please send some this way ---- www.checkingonnina.blogspot.com
This is a family from my micropreemie forum. I have kept up with them through their blog above.
Just over two years ago, in March 2007, Judith gave birth to triplets at 24 weeks. They lost one little girl about three weeks later. Another daughter died unexpectedly a few months later. Their remaining daughter, Nina, is a bustling 2.2 year old and absolutely adorable.
They have been very excitedly awaiting the birth of their son - due by C-section on May 20th. After such a difficult and devastating first pregnancy, they were thrilled that everything was going along perfectly.
Saturday, at 37 weeks, their son was born - stillborn - for no obvious reasons.
Personally, I can't not even begin to imagine the anguish they are feeling. There is no rationale in this world that can explain why a mother and father must bury 3 babies in less than 2.5 years. If it were me, I would begin to question everything I knew about a loving and compassionate God.
My heart breaks for this family. I can only hope that the loving and compassionate God I do believe in will surround them with His love and peace and, well, something, whatever will help them to survive this tragedy as well.
It's moments like these I'm am once again faced with the uncertainty of why we were so blessed while others suffer so much. Why have my Natalie and Abby survived and thrived while others have died and struggle so much? I could tell you a story every day of the lives, losses and trials of the brave moms and kids on my preemie forum. For those who know us and think we are so brave and have endured so much, I assure you what we have been through is NOTHING compared to many, many others. I wish I had an answer to my question. The best I can figure so far is that sometimes life just sucks. AND it's just really unfair. I could wax theological about the presence of sin in the world and how suffering was never God's plan, etc., but mostly I think the answer boils down to - life just ain't fair.
Please remember this precious family, and the families of the many who have lost little ones, in your thoughts and prayers.
Please remember this family in your praters
This is a family from my micropreemie forum. I have kept up with them through their blog above.
Just over two years ago, in March 2007, Judith gave birth to triplets at 24 weeks. They lost one little girl about three weeks later. Another daughter died unexpectedly a few months later. Their remaining daughter, Nina, is a bustling 2.2 year old and absolutely adorable.
They have been very excitedly awaiting the birth of their son - due by C-section on May 20th. After such a difficult and devastating first pregnancy, they were thrilled that everything was going along perfectly.
Saturday, at 37 weeks, their son was born - stillborn - for no obvious reasons.
Personally, I can't not even begin to imagine the anguish they are feeling. There is no rationale in this world that can explain why a mother and father must bury 3 babies in less than 2.5 years. If it were me, I would begin to question everything I knew about a loving and compassionate God.
My heart breaks for this family. I can only hope that the loving and compassionate God I do believe in will surround them with His love and peace and, well, something, whatever will help them to survive this tragedy as well.
It's moments like these I'm am once again faced with the uncertainty of why we were so blessed while others suffer so much. Why have my Natalie and Abby survived and thrived while others have died and struggle so much? I could tell you a story every day of the lives, losses and trials of the brave moms and kids on my preemie forum. For those who know us and think we are so brave and have endured so much, I assure you what we have been through is NOTHING compared to many, many others. I wish I had an answer to my question. The best I can figure so far is that sometimes life just sucks. AND it's just really unfair. I could wax theological about the presence of sin in the world and how suffering was never God's plan, etc., but mostly I think the answer boils down to - life just ain't fair.
Please remember this precious family, and the families of the many who have lost little ones, in your thoughts and prayers.
Please remember this family in your praters
Sunday, May 10, 2009
Happy Mothers Day!
Just wanted to say how lucky and blessed I am to be the husband to such a wonderful wife who is also a great mother. Natalie and Abigail, your mother is awesome! Johelen, you are the glue that holds our family together, which is just a nice way of saying you're stuck with us. Happy Mothers Day Wifey, I love you!
And to my mom, I am very thankful for all the love you gave me and Jeff and Jan as we grew up. I love you very much!
And to my mom, I am very thankful for all the love you gave me and Jeff and Jan as we grew up. I love you very much!
Wednesday, May 6, 2009
Happy Weigh In
I'm happy to report that the girls are still gaining weight! I weighed them today and was very pleased.
Natalie weighed in at 20 lbs, 6.5 oz. Abby was 20lbs, 12.5 oz.
Yea!!!
Natalie weighed in at 20 lbs, 6.5 oz. Abby was 20lbs, 12.5 oz.
Yea!!!
Saturday, May 2, 2009
SICC Report
Our evaluation and appointment at Duke's Special Infant Care Center (SICC) went very well - and very long. We arrived for our 9am meeting on time (for once for me) and rolled back into our driveway at 3pm - just in time for me to jump into the truck and make my 3pm dentist appointment (only 3 minutes away.) I'm honestly not sure what we did for 6 hours there - it didn't seem that long, but we did get a lot accomplished.
Here's the run down:
Weight & Height
Natalie: 20 lbs 2 oz! 32.5 inches.
Abby: 20 lbs and 32.5 inches.
We were pretty excited about this! Finally - 20 pounds and counting!
Development:
According to the Bailey Scale of Infant Development, Abby and Natalie both test at their adjusted age (20.5 months) in nearly every category: cognitive, receptive language and fine motor. As expected, their verbal expression was not as high and they tested between 16 and 17 months. Ironically, Natalie actually tested higher than Abby. Normally Abby is the chatterbox and Natalie more quiet. I will say that Natalie has come a long way int he past month. She has really started babbling and trying to repeat words you give her. Abby does more "jargon"; baby-speak in sentence form. For instance, she will point to something and say, "abba do dee doo?" She is clearly asking a question; the inflection of the words and tone is right, we just can't understand it. I have more to say on their language later, but this delay wasn't a surprise and in fact, it's documentation is somewhat welcome since we will now test to qualify for speech therapy for them both.
I do have a few words about their test results. I was a bit surprised they didn't test at or even above their actual age in some areas - especially language comprehension. According to some of the other developmental scales they test much better in several areas. I'm not sure exactly how the Bailey is different. It seemed to me they didn't even try to see how far above their adjusted age they could go. For instance, they had to identify three body parts and three pieces of clothing. "Where is your nose, your hair, your shirt, your pants?" Once they did that, the tester moved on. She never checked to see how many they could do. It just so happens that they can point to at least 15 body parts. Obviously, that alone doesn't jump them to a next level, but there are many things they can do that they never looked at.
I'm not sure what all that means, really. Maybe they were just trying to see if they were where they were supposed to be, and not the limits of what they can do. I don't know. At least we know they are on track for their adjusted age, which is really quite remarkable for 26.1 weekers and we are very, very proud of them.
More on the verbal expression ie. talking...
As I said, we were fully expecting some delays here. The girls really have made tremendous strides in the past few months - especially Natalie. But, they still don't really have very many words for 2 year olds. It's hard to say why. Maybe because they were premature, maybe because they are twins, maybe they would have talked later no matter what. Honestly, if they hadn't been premature, I probably wouldn't be that worried about it, especially since it seems every week they say more and more. But, since they are preemies, I see no reason not to use very resource available and help them as much as possible.
So, we have spoken to our CDSA case worker to set them up for evaluation for speech therapy. It just so happens that they stop adjusting for prematurity at age 2 which obviously works in our favor. Testing at 16 months isn't too bad if you are 20.5 months old. It's only a 4 month delay. But, if you tack on the extra 3.5 months, then the delay becomes nearly 8 months and that is certainly worth addressing. Therefore, we have evaluations coming up soon, and will begin Speech Therapy sometime in the next month or two.
Along with Speech Therapy, we will soon also begin Physical Therapy for Abby. I have recently been concerned about the way she seems to turn her right foot in when she is running. She also throws her arms back a bit when running. I had also noticed she seemed a little tight in her thighs; she has a lot of resistance when changing her diaper, for instance. So, I had PT look at her. She and the other doctors agreed that she seems to use her foot and arms to compensate when she starts to lose her balance. This likely indicates that her trunk muscles are not as strong as they should be. It also turns out they both have extremely flat feet ( one of the few things inherited from me - sorry girls). This causes them to "flap" their feet when running. You can hear it on solid surface floors that they sort-of have a clapping sound as their feet or shoes hit the floor. It's as if they aren't rolling their feet - heel, toe, heel when hey walk or run. They just slap them down flat-footed.
We've been given some exercises to help Abby with at home and the PT will help a lot as well. There is also the possibility that she will need some little braces on her lower legs to force her to keep her foot turned out the right way. It makes me sad to think of it, but I'd rather her have it done now than have problems later. I actually had a similar problem as a child and my parents were told I'd grow out of it. As a result, I have very flat feet and walk very much on the inside of my feet. It causes me a lot of pain in my ankles as well as very weak ankles which means I twist my ankles a lot, and sometimes actually fall right down. I don't want Abby to have the same problems later.
Other issues and discoveries:
The doctor felt Natalie's frequent pneumonias and both girls' reoccurring ear infections warranted further investigation. First up will be a trip to the pulmonologist for both to do some lung function testing. Premature babies are at risk for Chronic Lung Disease due to the scarring left by being on a ventilator when born. The girls have actually done very well considering they have not had any re hospitalizations since their discharge from the NICU (re-admits are very common for preemies). But, the last few months have been much more difficult, especially for Natalie. It's hard to say though how much of it is prematurity and how much is simply more exposure to other children. In any case, it's worth looking into therefore we will soon visit the pulmonoligist.
The ear infections will also warrant a visit to a specialist. Dr. G thought it appeared as if the girls had a bit of fluid in their ears and Abby's ears were especially waxy (again, sorry girls - that's a mommy thing). In light of the reoccurring ear infections and their delayed speech, an exam and opinion on ear tubes is in order.
The good news: The doctor was very pleased with their overall development and progress. She also did not seemed too concerned about their weight and I was thrilled not to get any lectures. She offered some suggestions to deal with the spitting up (which happens at least 5 times a week - maybe more). We may be giving Nutrum Junior or Bright Beginnings a try. Both are similiar to Pedisure but easier to digest and, of course, I think, more expensive and harder to get (special order from the pharmacy instead of on the shelf at Walmart or Target). We'll probably get some and give it a shot just to see if it makes a difference. It would be nice. We've given up on cleaning the carpet in their room. Now we just keep a towel spread out on the floor for them to throw up on - and to cover the already existing spots:-)
Overall it was a very good visit - if not very long. The girls were so tired. They were asleep in the car within minutes and slept when we got home until almost 6pm. It was a long day.
We are very pleased with how well the girls are doing, but the visit did offer a few eye-openers. Until now, Abby and Natalie have seemed to defy all odds and have met and exceeded all expectations. They seemed to escape the pitfalls of prematurity. It seems however, that it may be catching up with them a bit. Although flat feet and ear tubes are in no way limited to premature kids, I think we felt a bit much like we had dodged the premature bullet and our babies would continue to be pretty much perfect. We've been brought back down to earth, I think, and now face a number of the concerns many preemie parents face - including concerns over lung disease.
I think it goes to show however, how important it is for preemies to receive and continue to receive services that allow monitering for several years since it can take time for problems to crop up. As mentioned above, technically, doctors, therapists, etc. stop adjusting at age two because supposedly children are all caught up by then. Well, that's considered one of the biggest, and most annoying, myths among preemie parents. While it may be true that 36 week preemies are caught up by age 2, micropreemies are a whole different ball game. Obviously, some problems don't even begin to show up until 2 years, nevermind resolve themselves by then.
I have a feeling the next few months are going to be very busy. I'm not sure if I've mentioned it before, but I'm actually going to stop my babysitting job in the next few weeks. It kind-of breaks my heart, since the kids I watch are almost like my own and I'll miss them every day, but the girls have actually struggled more these past 5 months since I've started babysitting again. As always, it's the chicken and the egg argument, but it seems prudent to err on the side of caution. Also, the girls being sick throws a wretnch into the work plans of the kids' mother, which makes me feel just awful. So, no more work for me.
Aside from knowing I'll miss the kids so much, I'm happy we are making this move. I have felt like I never have time to play with the girls anymore the way we used to. I feel like I have been neglegent and I don't like it. I also think we are going to be pretty busy between Speech, Physical, Feeding, and Developmental Play Therapies. In between all of that, I also hope to travel some with the girls - to NY to see Auntie, to Luray to see Poppy and Nanny, and to Franklin to see Mema and Grammy. Folks, it's going to be a very busy next few months!
Here's the run down:
Weight & Height
Natalie: 20 lbs 2 oz! 32.5 inches.
Abby: 20 lbs and 32.5 inches.
We were pretty excited about this! Finally - 20 pounds and counting!
Development:
According to the Bailey Scale of Infant Development, Abby and Natalie both test at their adjusted age (20.5 months) in nearly every category: cognitive, receptive language and fine motor. As expected, their verbal expression was not as high and they tested between 16 and 17 months. Ironically, Natalie actually tested higher than Abby. Normally Abby is the chatterbox and Natalie more quiet. I will say that Natalie has come a long way int he past month. She has really started babbling and trying to repeat words you give her. Abby does more "jargon"; baby-speak in sentence form. For instance, she will point to something and say, "abba do dee doo?" She is clearly asking a question; the inflection of the words and tone is right, we just can't understand it. I have more to say on their language later, but this delay wasn't a surprise and in fact, it's documentation is somewhat welcome since we will now test to qualify for speech therapy for them both.
I do have a few words about their test results. I was a bit surprised they didn't test at or even above their actual age in some areas - especially language comprehension. According to some of the other developmental scales they test much better in several areas. I'm not sure exactly how the Bailey is different. It seemed to me they didn't even try to see how far above their adjusted age they could go. For instance, they had to identify three body parts and three pieces of clothing. "Where is your nose, your hair, your shirt, your pants?" Once they did that, the tester moved on. She never checked to see how many they could do. It just so happens that they can point to at least 15 body parts. Obviously, that alone doesn't jump them to a next level, but there are many things they can do that they never looked at.
I'm not sure what all that means, really. Maybe they were just trying to see if they were where they were supposed to be, and not the limits of what they can do. I don't know. At least we know they are on track for their adjusted age, which is really quite remarkable for 26.1 weekers and we are very, very proud of them.
More on the verbal expression ie. talking...
As I said, we were fully expecting some delays here. The girls really have made tremendous strides in the past few months - especially Natalie. But, they still don't really have very many words for 2 year olds. It's hard to say why. Maybe because they were premature, maybe because they are twins, maybe they would have talked later no matter what. Honestly, if they hadn't been premature, I probably wouldn't be that worried about it, especially since it seems every week they say more and more. But, since they are preemies, I see no reason not to use very resource available and help them as much as possible.
So, we have spoken to our CDSA case worker to set them up for evaluation for speech therapy. It just so happens that they stop adjusting for prematurity at age 2 which obviously works in our favor. Testing at 16 months isn't too bad if you are 20.5 months old. It's only a 4 month delay. But, if you tack on the extra 3.5 months, then the delay becomes nearly 8 months and that is certainly worth addressing. Therefore, we have evaluations coming up soon, and will begin Speech Therapy sometime in the next month or two.
Along with Speech Therapy, we will soon also begin Physical Therapy for Abby. I have recently been concerned about the way she seems to turn her right foot in when she is running. She also throws her arms back a bit when running. I had also noticed she seemed a little tight in her thighs; she has a lot of resistance when changing her diaper, for instance. So, I had PT look at her. She and the other doctors agreed that she seems to use her foot and arms to compensate when she starts to lose her balance. This likely indicates that her trunk muscles are not as strong as they should be. It also turns out they both have extremely flat feet ( one of the few things inherited from me - sorry girls). This causes them to "flap" their feet when running. You can hear it on solid surface floors that they sort-of have a clapping sound as their feet or shoes hit the floor. It's as if they aren't rolling their feet - heel, toe, heel when hey walk or run. They just slap them down flat-footed.
We've been given some exercises to help Abby with at home and the PT will help a lot as well. There is also the possibility that she will need some little braces on her lower legs to force her to keep her foot turned out the right way. It makes me sad to think of it, but I'd rather her have it done now than have problems later. I actually had a similar problem as a child and my parents were told I'd grow out of it. As a result, I have very flat feet and walk very much on the inside of my feet. It causes me a lot of pain in my ankles as well as very weak ankles which means I twist my ankles a lot, and sometimes actually fall right down. I don't want Abby to have the same problems later.
Other issues and discoveries:
The doctor felt Natalie's frequent pneumonias and both girls' reoccurring ear infections warranted further investigation. First up will be a trip to the pulmonologist for both to do some lung function testing. Premature babies are at risk for Chronic Lung Disease due to the scarring left by being on a ventilator when born. The girls have actually done very well considering they have not had any re hospitalizations since their discharge from the NICU (re-admits are very common for preemies). But, the last few months have been much more difficult, especially for Natalie. It's hard to say though how much of it is prematurity and how much is simply more exposure to other children. In any case, it's worth looking into therefore we will soon visit the pulmonoligist.
The ear infections will also warrant a visit to a specialist. Dr. G thought it appeared as if the girls had a bit of fluid in their ears and Abby's ears were especially waxy (again, sorry girls - that's a mommy thing). In light of the reoccurring ear infections and their delayed speech, an exam and opinion on ear tubes is in order.
The good news: The doctor was very pleased with their overall development and progress. She also did not seemed too concerned about their weight and I was thrilled not to get any lectures. She offered some suggestions to deal with the spitting up (which happens at least 5 times a week - maybe more). We may be giving Nutrum Junior or Bright Beginnings a try. Both are similiar to Pedisure but easier to digest and, of course, I think, more expensive and harder to get (special order from the pharmacy instead of on the shelf at Walmart or Target). We'll probably get some and give it a shot just to see if it makes a difference. It would be nice. We've given up on cleaning the carpet in their room. Now we just keep a towel spread out on the floor for them to throw up on - and to cover the already existing spots:-)
Overall it was a very good visit - if not very long. The girls were so tired. They were asleep in the car within minutes and slept when we got home until almost 6pm. It was a long day.
We are very pleased with how well the girls are doing, but the visit did offer a few eye-openers. Until now, Abby and Natalie have seemed to defy all odds and have met and exceeded all expectations. They seemed to escape the pitfalls of prematurity. It seems however, that it may be catching up with them a bit. Although flat feet and ear tubes are in no way limited to premature kids, I think we felt a bit much like we had dodged the premature bullet and our babies would continue to be pretty much perfect. We've been brought back down to earth, I think, and now face a number of the concerns many preemie parents face - including concerns over lung disease.
I think it goes to show however, how important it is for preemies to receive and continue to receive services that allow monitering for several years since it can take time for problems to crop up. As mentioned above, technically, doctors, therapists, etc. stop adjusting at age two because supposedly children are all caught up by then. Well, that's considered one of the biggest, and most annoying, myths among preemie parents. While it may be true that 36 week preemies are caught up by age 2, micropreemies are a whole different ball game. Obviously, some problems don't even begin to show up until 2 years, nevermind resolve themselves by then.
I have a feeling the next few months are going to be very busy. I'm not sure if I've mentioned it before, but I'm actually going to stop my babysitting job in the next few weeks. It kind-of breaks my heart, since the kids I watch are almost like my own and I'll miss them every day, but the girls have actually struggled more these past 5 months since I've started babysitting again. As always, it's the chicken and the egg argument, but it seems prudent to err on the side of caution. Also, the girls being sick throws a wretnch into the work plans of the kids' mother, which makes me feel just awful. So, no more work for me.
Aside from knowing I'll miss the kids so much, I'm happy we are making this move. I have felt like I never have time to play with the girls anymore the way we used to. I feel like I have been neglegent and I don't like it. I also think we are going to be pretty busy between Speech, Physical, Feeding, and Developmental Play Therapies. In between all of that, I also hope to travel some with the girls - to NY to see Auntie, to Luray to see Poppy and Nanny, and to Franklin to see Mema and Grammy. Folks, it's going to be a very busy next few months!
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