Testing 1-2-3

Okay - this is a test of picture and video posting. If you happen to catch it while it's up - don't be confused:-)




I'm trying to figure out how to put little videos on here ...bear with me!

Play Dates Times Two

Wow - two play dates in one week! We are regular social butterflies. Today my friend, Paula, and her darling daughters, Rachel and Michelle, came to visit. They were all so sweet with the girls. It was so great for mommy to have someone to talk to as well. I'm honestly not sure when I last left the house. I'm trying hard to organize some kind of social interaction every week. So, if anyone wants to sign up...

Watching Rachel and Michelle interact and play was fun. At one point they were running in a circle from the living room to dining room to kitchen to living room. One was pulling a string with a ball on it (a cat toy) and the other chasing her. I just laughed and said, "that's what I have to look forward to". There's something about running in circles kids love. Walker and Blaire always did that - ran round and round through the house pulling their stuffed animals or riding a little car. It was so cute. When Ben came home just before everyone left, he watched the girls with the biggest grin. He too commented, "that's what we have to look forward to". Then he added, "and I can't wait." He almost looked like he had tears in his eyes:-)


Thanks so much to Paula and the girls for keeping us company. We're happy to have you anytime.

A Play Date

Today was a pretty good day. Mostly:-)

The day actually didn't start very well. I over slept, and at 11am, the girls refused to eat anything. That put me in a rather ill mood. I've been very worried about Natalie and her weight gain. We weighed her last Tuesday and she had only gained 4 oz in the two weeks prior. Every ml she doesn't eat worries me.

Ben was home for lunch, of course, and that always helps with the feeding. I had managed to get a shower and clean up a little. If you've seen my house, you'll know this is quite an accomplishment. I tell people when they come over they have to play the "Pretend Game". You have to pretend you don't see the mess.

At 1:45, we had a play date. The children I was babysitting for when I was pregnant came over. Liam, Abbey, and their mom, Kelly, had not yet met the girls. It had been about 5 or 6 months since I had seen the kids, and they were so big! Especially Abbey. There is a big difference between 15 months old and 19 months old! It was so great to see them and Kelly and talk to an adult - and kids who can talk back.

Kelly and I talked about their feeding issues. Kelly made the point that it's hard to look past the present to the future. At whatever stage one is in, it's easy to think it will always be this way. For instance, when a newborn doesn't sleep through the night the first few months, you think she'll NEVER sleep through the night. A few months later, it's all forgotten. I thought she had a great point. Yes, the girls don't eat well, but 3 months ago, we were trying to get them to eat 30mls per feed. Now we already up to 100mls. In three more months, we may be at 130mls. This too shall pass.

Here at the end of the day, Abby has had a pretty good day. Natalie - not so much. But, we weighed them earlier and our scale says Natalie has gained 6 oz since last Tuesday. If it's correct, that's amazing. Maybe I am obsessing after nothing.

Another good thing is that for the first time in weeks, okay, months, our house looks half-way decent. As long as you don't go into the office, you can see the floor is every room. Now that is a good day.

Happy 9 month birthday!

Wow - Natalie and Abigail are 9 months old. How did that happen! Check out their adorable pictures. At the 8 month mark, Abby hammed it up for the camera. This time it was all Natalie. She was just beautiful. I'll post the full photo shoot as soon as possible.

At 9 months (5.5 months adjusted) here's what they are up to:

Both girls are officially sitting up! Well, they can sit up for several minutes on their own, so I guess that's official. I wouldn't leave them alone like that though. Abby is getting really good and pulling her body up and straighting her back to sit up straight. We've really been working on those ab muscles and it shows!

Natalie and Abigail have also discovered their toes (an important ab muscle exercise). Again, Abby is a bit more interested. Sometimes she just holds on to them and looks around. They also like to kick a lot - sometimes up in the air and sometimes at toys I hang or hold in front of them.

Abby is really on the move. Just in the two-three days since when I started this post and now, she has advanced in leaps and bounds. She has begun to scoot backwards while on her tummy. She can also turn in all directions to reach for toys. She will lean and balance on one hand while reaching for or holding a toy. She is also trying SO hard to move forward. She will see something in front of her that she wants and she reaches and reaches and just can't quite get there. But, she's very close. Today (Thursday) she has really been trying to rock up on her knees. She got very close several times. Crawling is just around the corner...

Natalie can also turn around on her tummy and as of today, I think is starting to get the idea of pushing backwards. Natalie is much better at flipping from her back to her tummy than Abby though. She can turn over very well. Natalie is more content to be more still and play with one toy than reach for everything in sight (like Abby).

Both girls are very vocal and love to "talk" and talk. They will engage in "conversation" with you and it's delightful. They are still the happiest babies I've ever seen. The only times they fuss are when we wrap them up and put them to bed and they aren't ready to sleep, or when we try to feed them. The smile and laugh and play all day.

We are solucky to have the most beautiful, happy babies in the world.

Okay - I'm back!

Good grief ! How the time flies. Have we already been home from my dad's for over a week? I think I'm still recovering. Part of recovery is catching up on blogging, and I have a lot to report.

Be sure to scroll down and catch up on all the latest news!

The Parent Test

Yesterday was quite an adventure. We left my dad´s in Luray, VA around 11am. The trip is generally 5.5 - 6 hours. With the girls, you have to add at least an hour for a feeding stop. Natalie also had a very bad diaper rash that we wanted to stay on top of with frequent changes. We figured we'd be home about 7ish.

We were moving right along despite multiple stops: several diapers changes, two feedings, and a fussy Abby who we checked a few times just in case of a poopy diaper. Around 6pm, we were about 35 miles from Durham. We were very happy. The girls, who are really amazing travelers, had had about enough and were getting fussy.

Just ahead, we begin to see the bright lights of the big ole city of Durham. But wait, that's not Durham. It's the site all parents traveling with children dread: the tail lights of slowing traffic.

We were around exit 212 on I-85 South. We were in the left lane and our first mistake was not immediately getting over and taking the exit before it was too late. But, it was too late. Much too late. Through conversations with Jeff and my mom, we learned of brush fires in the area closing down parts of the interstate as well as other highways. Traffic was being re-routed at exit 209 onto highway 158 to a spot further down 85. So, 3 miles. That can't take but so long, right?

Almost two and a half hours, a road-side pee break, and a half-a-dozen broken traffic laws and behavior that would initiate a DCS investigation, we finally made it to Highway 158. We reached our home around 9:30pm - 10 hours later.

10 hours in a car with two screaming babies is not a lot of fun. I can't say that I blame them. They were so tired of being cramped and strapped into their car seats. On the plus side, both girls had a chance to practice driving with Daddy.

It was certainly quite a trip. But, I suppose you aren't really a parent until you've been trapped in a car with a screaming kid. Well, we've passed the test. For the traveling gods keeping score, we no longer EVER need to take that test again. We consider ourselves to have passed with flying colors. No further instruction needed.

Did you miss us?

Hi all! I know I've been absent of late. The girls and I are actually at my dad's in Luray, VA. We've been here since Driday adn will be returning home Sunday. My dad has *horror of horrors* DIAL-UP, and doing anything on the computer takes more patience than I have.

The girls are doing well and I will have updates and pictures in a few days once we are home.

Thanks for checking in!

The Eyes Have It

Today was our the last in our whirlwind tour of Doctorville. The girls had eye checkups today.

Natalie had a scheduled appointment for a check of the remaining eye with signs of ROP. It checked out completely mature! Now both girls have no vestiges of ROP. Yeah!!

Abby had been cleared at her last appointment, but I had some concerns about her left eye turning in towards her nose. The doctor said she looked just fine. Apparently it's a common occurrence for babies. It's actually more of an illusion due to the folds of skin around her eyes and the immature growth of her nose bridge. The doctor said she looked really great as far as her tracking and whatever else there is they look for.

We are finally getting away from the weekly doctor visits that plagued our first few months. The girls aren't due back to the eye doctor until August. Even the Duke Clinic has let us off the hook for 3 whole months! Now if we can just stay out of the pediatrician's office...

Beyond Words...

As I piddle around my desk, waiting for the stroke of midnight and the chime to feed my babies, I have stumbled upon a site for a little miracle named Nicholas.

Born at 25.5 weeks, weighing only one pound, his survival is nothing short of a miracle. One of his mothers is a film maker, and she has chronicled his story in an award winning documentary.

I watched the trailer, and was mesmerized. I clicked on the link "NICU World" to read a poignant and heart-wrenching memoir of a mother who believed beyond all hope that her son would live and the perilous journey of a little boy who endured more than any little child ever should. I listened to the haunting melody of the theme song, "Can You See the Light". I watched, I read, I listened, and I was humbled.

The discovery of this site comes on the eve of another discovery of a blog of twin girls born at 24 weeks. Both girls have Cerebral Palsy, one mild, the other, moderate to severe. The child with the more severe case is also deaf. Today, while at the Duke SICC, I watched several children also waiting to be seen. One, a little boy, maybe 2 or 3 years old, suffered from some form of disability. His face showed the effect of some form of brain impairment. Another child, carried by his parents, was hooked to an apnea monitor and possibly oxygen as well. A tube protruded from his nose.

I watch these kids and read the blogs, and I don't understand. How have our girls turned out so perfectly? At 26 weeks, surprisingly, their chance at survival was 80-90%, but the manner in which they would survive was far more uncertain. So many things could go wrong, and yet, so far, they have avoided all the major complications. Do you know how rare it is for a 26 week old preemie, and twins at that, to have NO surgeries? Honestly, I don't either, but I think it's pretty unusual. Every problem Natalie and Abigail have had has resolved itself. They have met and exceeded every expectation. They are happy, good natured, pain-free, and doing all the things they are should be doing. How is this possible?

When I see and read of other children with obvious issues and then I look at Natalie and Abigail, I am humbled - and ashamed. Whatever we endure with their reluctance to eat is nothing compared to the trials and tribulations of so many others. Our girls are nearly perfect, and our lives are so easy when juxtaposed to the parents who struggle every day just to have their children survive.

Ben and I are so blessed. I don't know why. We aren't especially good people. I mean, we're alright, but not overly generous or kind or thoughtful or selfless to others. We love our God, but we aren't the best Christians in the world, or even probably in the top half. Why were we chosen to have these perfect little children when so many parents who are so much more deserving have been dealt a much harder hand? It's just not fair. To them.

Natalie and Abigail are so amazing. I don't know why our lives have been filled with so much light when others stumble in the darkness. I want to try to not take them for granted. I want to try to appreciate and revel in the light they bring to our world. I don't want to ever forget that our lives could be so much more dark.

Please check out the link below and learn a little about Nicholas. Be sure to read the NICU link. His mother gives voice to the hearts of all NICU parents in a way most of us never could.

http://www.littlemanthemovie.com/home.html

I don't know why our little Natalie and Abigail are so perfect. I can choose to believe it is because of the prayers of so many. Some of you have followed them since we first learned their little lives were in danger. Others have joined their journey recently. To you all - thank you. Thank you for your prayers. Natalie and Abby are perfect examples that God still does perform miracles.

Finally - Something Different After All

We have finally discovered one discernible difference between Natalie and Abigail. Natalie hates bananas and Abby will eat them. They are two different people after all!

We've tried bananas three times with Natalie and every time she threw up. Third times a charm, as they say, and there will be no more bananas for Natalie for a while. Abby does fine with them. I mentioned this to the doctor who said it's actually quite common for babies to not like bananas. Hmm, who knew?

Another good doctor day

Today we were back at Duke's SICC for another check-up and g-tube discussion. It went really well.

Dr. Malcolm was very understanding and supportive of us seeing a doctor at UNC. He agreed surgery is a big deal and worthy of a second opinion. He was super nice about it. He was also very pleased with the Natalie and Abby's progress. Their growth was much better than last time and Natalie even made the chart. What was most encouraging was the growth in their head circumference. This had been the area of most concern. Dr. Malcolm felt very good about their progress and content to let them to continue to go on as is. There was no more discussion of the g-tube - for now...

I was also very pleased about their weight gain. Since Friday, they have each gained 3 ounces. Natalie weighed in at 11.8lbs and Abby one pound more at 12.8lbs. 3 oz since Friday is really, really good.

Everything really went well and we were so pleased with the appointment. The last 3 appointments have definately been better than previous appointments. Let's hope the eye appointment Thursday goes just as well.

Developmental Updates

I keep saying how well the girls are doing developmentally, so I thought I'd explain exactly what I mean by that.

Natalie and Abigail will be 37 weeks old tomorrow. They were 14 weeks early so that makes them 23 weeks old adjusted or corrected age (AA). That's about 5 months, 3 week. In terms of their development, everything is based on this age. As it stands, they are meeting all the developmental milestones for the 5 month range and many for six-month olds. This includes:
* Picking up items with one hand
* Transferring items between hands
* Bringing items to their mouths
* Reaching for items above them and beside them
* Rolling from front to back
* Rolling from back to front (abby once, Nat several times)
* Sitting alone while leaning on their hands
* Talking, laughing, smiling in response to people
* Pushing up on hands (off elbows) while on tummy
* Picking up small (1 inch square wooden blocks) items and manipulating them
* Blowing bubbles/raspberries
* some cause and effect - chewing on a toy to make it vibrate; pushing and swatting at a toy to make it spin
* Recognition and favor of mommy and daddy (especially daddy - when "talking" to him through the web cam, their faces light up when they see him and they smile and smile)
* Bear weight on their legs when brought to a standing position
* Respond and engage their images in a mirror
* Gets excited at sight of bottle (when hungry) and even reaches to move it to their mouths. They will also put their hands up to "hold" the bottle while drinking.


They also show preferences for certain toys and will reach for them when they see them. They even will try to move around to get a toy out of their reach. They laugh and smile a lot. They also "talk" and coo to their toys and to each other. They like to reach for each other when they are close, especially each other's mouths and clothes.

There are a few things they are not doing yet.
* They are not showing stranger fear - they still love everyone.
* I'm not sure they are looking for toys/items after they disappear. Sometimes it seems like they are looking for Ben when he disappears behind the kitchen counter.
* They don't seem to recognize their own names yet. I wouldn't be surprised if this takes a little longer. After all, they are always hearing TWO names.

As you can see, they are really doing very well. It's not unusual for micro-preemies to fall behind even in their adjusted age development. Natalie and Abigail are doing tremendously well. They do everything just perfectly - except eat!

We are so proud of them and we love them so much!

Baby, you outta be in pictures...

I know it's taken forever, but there are new pictures up on the picture and video site. I still have some to add, but have a look through November, December, and January.

For fun, go back and look at the pictures from September when they first came home. I was looking through them and just can't believe how much they have grown and changed.

Speaking of growing, if we want them to grow, I'd better go feed them. Enjoy the pics and videos!

Doctors, Part Two

Thursday - UNC Special Infant Care Clinic

Thanks to our friend, Adam, we were able to get into the UNC SICC very quickly. We really wanted to see what someone else said about the need for the g-tube so we were very happy to get in so fast.

The visit was great. Despite the 8am appointment, we actually made it in time. Ben went with us which was a big help. The nurses were so nice and everything was really quick. They even gave us two lift-the-flap books as a first time visit gift. Of course, they weighed them. Abby is now 12.5lbs and 24.173 inches. Natalie is 11.5lb and 23.858 inches.

We saw Dr. Diane Marshall, who was just wonderful. We also had a feeding therapist stop in and do a quick evaluation. Overall, they were pleased with the girls. When plotting their stats on a chart for low birth weight babies, they both made the chart - although Natalie just barely. Dr. Marshall thought they seemed to be following their own curve very consistently. Their head circumferences were good for their weight and height (which means their brains aren't starving:-)) They looked at their average weight gain for the past month or so and they are gaining about 12g a day. The recommended weight gain is 10-30g a day. (30g = 1 ounce) Once again, they are in that window, but just barely.

However, they are in the window, and they are gaining weight. As a matter of fact, since coming home, Natalie has gained an average of 17.5g a day and Abby has gained an average of 15.94g a day. Dr. Marshall also looked at their developmental progress, which is fantastic, and their general overall health. If you look at the girls, they LOOK healthy. They even look a little fat. They have pudgy little bellies and fat rolls on their legs. Abby even has a double chin. They smile and laugh all the time. The sleep well, nap well, and play well.

In the end, Dr. Marshall said she would not recommend a g-tube at this time. As long as they continued to follow their own curve on an upward trajectory, they were doing okay. She also admitted that the truth is "they" don't really know exactly how much babies are supposed to grow and weigh, especially for micro-preemies. That's one reason the range, 10-30g, is so wide. Dr. Marshall also agreed with the feeding specialist that it's possible that the girls simply don't need as much as they are "supposed" to need. The girls have always had a ceiling on what they were comfortable eating. They would often eat well the first 15ml, 30ml, 45ml, 60ml, etc., then shut down. It may be that that amount is where they feel comfortable and full. Maybe their little tummies can't handle any more. It may also explain why when we tried to gavage them back in November with larger amounts, they couldn't handle it and just threw up. It may be that the girls instinctively know how much they need to maintain their health. So far, it seems to be working pretty well.

The bottom line is that the girls seems to be doing okay. Dr. Marshall did not recommend a g-tube now or in the future AS LONG AS they continue their current growth curve. If they were to ever stop gaining 3-4 oz a week, we would have a problem. Or, I suppose, if they started to lose energy or become fussy and act as if that 3-4oz is no longer enough for them.

We were thrilled, of course. We have been very reluctant to move in the direction of the g-tube. Natalie and Abby just seem too healthy to need surgery. We still struggle with their feeding and will continue to work hard to increase their caloric intake. We have started solids and are working on that 10am feed. If they would take a bottle then, it would make all the difference.

We are going back to the Duke SICC Tuesday and will report on the recent appointments we have had. They do know we saw the doctors at UNC since they requested the girls' records. I'm a little nervous about it, honestly. The doctors at Duke have been so good to us, and I don't want them to think we don't trust their judgment. Hopefully, they won't be too offended.

We will report on that appointment Tuesday, but for now, everything looks good and we are NOT having surgery.

The Doctor Is In

Well, after two days of appointments, things are looking up. Here's the recap.

Wednesday - Occupational Therapist (OT) and Speech Therapist (ST)

The appointment was actually a lot of fun. The therapists were great and the girls were so good. We answered a bunch of questions on their sensory reactions and they scored very well - completely in the normal range. They were looking for any indications of sensory integration issues, ie: cried at loud sounds; doesn't like touch; can't deal with change; etc. Having a few of these issues myself, I've been on the lookout and the girls haven't shown any signs of any of this.

Having heard the girls had started some solids, the therapists (TPS) then tried some green beans and bananas using a variety of textures spoons and implements. The girls loved it. The were happy to put the new utensils right in their mouths. They each seemed to prefer the bananas and it took a bit for Natalie to warm up to the green beans. The TPS were quite pleased with their oral exploration.

They also observed the girls drinking a bottle, which happily they were interested in drinking. Again, they were pleased. Natalie shows some weak latching at times and the milk dribbles out a bit. Otherwise, they did well.

The only real concern they had was the tendency the girls have to throw their arms back when sitting or standing. It could be a reflux reaction or just a bad developmental habit, or a combination of the two. They recommended seeing a physical therapist to check it out. We've been aware of the problem for a while and have worked hard on keeping their arms forward as much as possible. I do want to check with PT for any additional exercises we can do.

The conclusion:
After some math and averaging out a 12-day period, they agreed the girls were very, very close to where they needed to be. They showed very good oral skills and seemed happy, healthy, and developmentally appropriate. They recommended a few things we could try: changing when we give their Previcad in the morning (no problem, that's easy); offering solids mixed with formula powder twice a day; increasing the calorie per ounce of the formula from 24 to 27 (started this today); letting them touch and "play" with the food; and using various utensils for feedings.

Our big push is to improve their 10am feed. Right now, they eat almost nothing. If we could add that feed in, it would put their totals so, so, so close. 10am is one of the times we will definately offer cereal (after their bottle).

Overall - they believed we should put off the g-tube at least one more month to see if they could take some extra calories through solid food. Often babies who have a hard time with liquids take well to solids, so this is our hope.

As usual, and with usual irony, the TPS didn't seem to think they would benefit from coming weekly to their clinic. It's very odd to me that for babies who are supposedly doing so poorly, no one seems to think they need weekly therapy intervention??? I just don't get it.

Home Again

Well, we survived the trip back. The girls were so good. We honestly have the best babies in the whole world. I had to stop once to change and feed the girls and let them stretch a little. I drew a bit of attention trying to feed babies in the restroom of a rest stop on I-40. They actually ate pretty well though. I had to stop one other time to change Abby when she was fussing. The girls did start to fuss the last 15 minutes, but out of a 5 hour trip, that's pretty good.

Daddy was VERY glad to see his girls - and me too, I think. I think he missed us (them) a lot. I brought back two trash bags full of the next stage of clothing. It will take me forever to go through them. I told my mom the clothes were likely to still be in the bags until she came to visit.

We had a great time at Mema's and Grammy's. The girls are so lucky to have such great grandparents. We are blessed in so many ways.

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Tomorrow starts a round of doctor's appointments over the next two weeks. OT/ST, UNC, Pediatrician, Duke, and the Eye doctor. Whew, I'm tired already.

Fun at Grandma's

The girls and I are having a great time at Grammy and Mema's. The trip up was okay. They did well until the last hour or so and started to fuss just a little. I guess that's still really good for a 5 hour trip (which actually took about 6 hours). I stopped twice to try to feed them, but they wouldn't eat. It's definitely easier to travel with two people if for no other reason than bathroom stops. Hauling two car seats into the rest stop is a bit of a chore.

There was some snow on the ground when we arrived, and it snowed briefly on Saturday. It wasn't really enough to accumulate but it was pretty coming down. We put the kids funny hats on and took a picture in their first snow. It's been fiercely cold though, as it has around most of NC. It was 8 degrees here this morning. We were going to take the girls to church yesterday, but decided it was too cold.

The girls are having so much fun playing with Grammy and being held by Mema. Mema is so cute talking and whispering to them. I am just filled with joy when I see her with them. The only sadness is she can't see them. She's been blind about 3 years from post-chemo complications. I wish so much she could see their little faces. But, she can hear their laughter and snuggle them close and that brings her joy.

Yesterday, Natalie actually turned from back to front twice yesterday. I guess that makes up for her not eating well:-) Abby ate very well - nearly 600mls. I did a little experiment yesterday (and today). When my alarm didn't go off yesterday, I thought I'd just see how long they would sleep and how well they would eat when they woke up. They started stirring about 9:30. They probably would have stayed in bed longer, but I got them up to eat and they each ate 100ml. Today I got them up about the same time and they ate 90mls. We will have to see how well the rest of the day goes.

Grammy has been very helpful and pretty good at feeding the girls. It's nice to visit with them and not be alone all day. It's also nice to take a nap while Grammy watches them. Grammy also made chili Saturday and it's been soooo good.

The mountains are beautiful here and I am so glad the girls have such a beautiful place to visit when they come to Grandma's. I can't wait to watch them grow up playing in the creek at Grandpa Rickman's farm and leaf-looking in the fall. What a great place to be a child.

On the Road Again

Mommy and babies have hit the road. We arrived at Grammy's and Mema's as of this afternoon. The trip went pretty well although the babies did fuss a little the last hour. When we arrived, they wouldn't eat at all. It's 10pm and they have only eaten 3 times for about 250mls total. They'll have two more feeds but they will still be quite short. Oh well. Tomorrow will be better.

We will be here in the mountains until Tuesday morning. There's no place like home - except Grandma's.

Happy 8 Month Birthday!

Tuesday, Natalie and Abigail were 8 months old! Who can believe it??? Check out their cute pics.

Rays of Hope

Today was a good day. I let the kids sleep in and they started stirring about 10:15. Rather than fight with the 10am feed, we tried a little cereal instead. They have eaten fairly well today, especially Natalie.

We had some good news today though. We were able to get an appointment with UNC Special Infant Care Clinic for next Thursday. *THANK YOU ADAM!!* We are very please Maybe they will have a different opinion or view of things. Maybe they will have had an experience with babies like Natalie and Abby. Maybe they will say the exact same thing as the Duke doctors. In either case, at least we will feel like we tried something and it will help settle our minds.

I also received an email from Dr. Patel at Clinic 4 Kidz. I wasn't expecting to hear from them for weeks. She said she would call me sometime this week. That's VERY encouraging. I'm hoping they will be sympathetic to our desire to AVOID a g-tube and try to work us in. All that is if they even work with babies at all.

I have also found a preemie forum support group. I am gathering some good information on others experiences and it's very helpful to me.

Today really has been a good day. The girls (and mommy) took a 2 hour nap this afternoon. They are responding well to their nap schedule. Getting them to sleep at bedtime is challenging at times, but they are getting the hang of it. Yeah babies!