Thursday, January 31, 2008

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...

Tuesday, January 29, 2008

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.

Monday, January 28, 2008

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!

Sunday, January 27, 2008

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.

Thursday, January 24, 2008

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.

Tuesday, January 22, 2008

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.

Monday, January 21, 2008

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.

Friday, January 18, 2008

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.

Thursday, January 17, 2008

Happy 8 Month Birthday!



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

Tuesday, January 15, 2008

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!

Monday, January 14, 2008

Just when you think it's getting better

The 9pm feeding didn't go so well. Natalie ate okay, but Abby was a mess. She's crying and crying. I still think she's teething as she chews constantly on her hands and fingers. But I'm also concerned she has an ear infection. She's been pulling on her left ear. So, it's off to the doctor tomorrow to get her checked out.

It's so hard when she is crying and crying when we try to feed her. I've never seen children cry to NOT eat. When they don't eat we just feel like such failures. And then we worry. Every poor feeding feels like we are one step closer to the g-tube and a childhood of eating problems.

Not to sounds whiny, but, it's just not fair. It's just not fair. We want to be normal with normal eating babies. We want to not struggle with every single feed and feel like life and death depends on how many ml they eat. We wish we could just enjoy our little babies and have a house full of joy.

That said, I know it could be worse. They could be very sick with all kinds of tubes and medical problems. They could also not be here at all. We know we are still very lucky. We don't want to be ungrateful or complain. But, we are tired - so tired - and just want to find some help -for us and our little girls.

Today's progress

A few good things happened today.

One: The girls ate very well at 7am (95mls each). This is a very good way to start the day. Granted, they didn't eat anything at 10am, but we are still staying positive.

Two: Solid Foods - bring them on! We tried some oatmeal with the girls at 6pm and they did very well. At least they didn't spit it right out. I think they even swallowed some! We just tried a little, but we will try some more tomorrow. We are hoping that if they take well to solids we can get them to gain weight.

Three: I called the Clinic 4 Kidz and left a message. I just found out that's they are on vacation for a month and may be booked until March, but at least they have my name and number. I'll probably call in a few weeks.

Four: Our good family friend provided us with a contact name with the UNC Special Infant Care Clinic. Adam is a doctor at UNC and I believe even spoke to the doctor about us to give us a chance to get in. I left a message and will call again tomorrow. We want to get a second opinion on how the girls are doing and just see if they have any other ideas or things we could try.

In general, today was a good day. I managed not to lose my mind, which is quite remarkable. The girls have eaten fairly well, especially Natalie. They are doing better with their sleeping/nap schedule. Going to bed tonight was much easier than it has been. We are putting them down earlier which I think helps. The 3 hour schedule is wonderful. I feel like I have all this time to get things done. It's amazing!

Just as an aside...did everyone watch UNC beat the begeezes out of NC State Sunday! He, he, he. That was beautiful. (Sorry Uncle Jeffie:-() Go Heels!

Eat Mor 4Moola

The Mommy Moo Cow is finished. Today is the first day in almost 8 months (as of tomorrow) that I have not pumped. There's definately a sense of freedom, but sadness too. I do feel bad about quiting, but I just can't do it anymore. I had hoped to make it a year, but 8 months will just have to do. The thing I worry the most about is changing my mind in a week. This is one thing you definately can't change your mind about. It's not like you can take a week off for vacation, then start back. If I could, I would, then take it up again.

In the end, it may help the girls. The formula has more calories and other things, like iron, that they need. They may actually gain more weight on the formula. Although any antibodies I carry would help the girls, I'll just have to hope we can keep them well without them.

I may have to pump a few more times to be comfortable until my milk dries up. Then I will somewhat happily clean my pump and supplies, and figure out whether to sell it or give it away. O Happy Day.

Sunday, January 13, 2008

Thanks to all...

People are so amazing. In the past few days, since the "I'm losing my mind" post went up, we have received several emails and phone calls from people offering encouragement. Some of the emails are even from people we don't know who came across the blog by various means.

Thank you all so much. It feels good to know people are thinking about us and wishing us the best. It also feels good to know we aren't alone in our struggles and feeding problems. It truly is a blessing to hear from people who care. Thank you, thank you, thank you.

Hanging in there

Well, we are still here. Friday was slightly better than Thursday, at least in terms of Mommy holding it together. I took a long walk with the girls in the afternoon and that seemed to help. The weekends are always better when Ben is home. It's not so much that they eat better, but I can handle it better with his help.

Here's where we are:

First - We have moved to a three hour schedule. There are several reasons for this. One: they had started eating several feeding of 100mls. They were doing it about every other time in the afternoon and evenings. The alternate feeds they would only eat 60-80mls. It made since, really, sense it had only been an hour since they had finished eating so much. So, we thought if they had more time, they may eat 100ml EACH time. Two: It was wrecking havoc with any attempts to set a napping schedule. There's just no time for them to sleep if they eat every two hours. They were consistently getting over tired. Three: We were losing our minds on the two-hour schedule. It was just so tedious and we'd been doing it for about two months and it was just wearing on us. We just couldn't do it any more.

They haven't really shown much progress on the three hour feeds. Sometimes the eat 100ml - sometimes they don't. But, we like it much better and we feel like we get some breaks. We are also working on a napping schedule and the girls have had several long naps which is good for them.

Second: Doctor update:
Friday, Dr. Malcolm from Duke SICC called me. I guess between a few frantic emails I sent him as well as a call or email or something from Dr. Baker (the ped), he thought he better check in. It was actually quite nice since he's been out on medical leave and wasn't even officially back to work yet. Basically, I told him of our frustrations in feeling like every time we come there they tell us to try something different and it gets worse. In the end, we agreed to schedule the girls for evaluation with GI or pediatric surgery for the g-tubes. We are also going to be seen at Lenox Baker as soon as possible. He also called in a new med for the reflux. We couldn't pick it up in time on Friday, and the pharmacy at Duke isn't open on he weekend so we'll get it Monday. Hopefully it will help and they won't throw it up.

A little later, we had a call from Lenox Baker scheduling evaluations for the girls on Jan 23. Lenox Baker is an out-patient clinic for intensive Occupational (OT) and Speech Therapy (ST). I'm desperately hoping they can help.

Third: Outside help:
A while ago I saw something on a feeding forum I visited about a clinic that would send therapists to your house to help. I posted a request to see if anyone knew what it was and someone responded. It's called Clinic 4 Kidz. The seem to work miracles. www.clinic4kidz.com I've sent an email and will be calling Monday morning to see if they even work with kids as young as Natalie and Abigail. I don't know how much it costs (a lot, I bet) or if insurance would cover it (probably not), but at this point we'd pay anything if it will help them to eat.

I also called Elizabeth, our Durham Country Department of Children's Services caseworker (CDSA), to see if we could get ST and OT in our home.

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So, this is our plan for now. Hopefully next week will go a little better with the 3-hour schedule and scheduled naps. Mommy will try to hold things together for a little longer.

Thursday, January 10, 2008

As if the day couldn't get any worse...

You know, it's never good when the doctor who yesterday told you that your baby is fine calls the next day to tell you he has changed his mind. Nope, not good at all.

To top off a very bad day, the doctor we saw yesterday called about 6:00pm. *recap* Our regular pediatrician is on maternity leave so we saw a different doctor. Nat was the only one checked in, so he was only reviewing her chart (he didn't know about our doctor's two-for-one special). I asked a bunch of questions about how worried I should be, etc. I was happy to talk to someone new. It seemed like other babies about their gestation age weigh about the same. Yesterday, he said she seemed to be gaining weight well enough. ...Skip to today...Everything he said was specifically about Natalie, but can mostly be applied to Abby as well. *recap over*

So, the Dr. Baker calls and says he has been reviewing Natalie chart and has changed his mind. He plotted her growth on the curve they use and she is still 1-2%. She is also especially short for her Gestational Age (GA). I knew that since they are still only about the length of some new born babies. It also said that based on her weight, she should be getting a minimum of 650mls a day. (That means Abby needs even more, since she's bigger.) We are barely hitting 550mls. The 650mls gives her the minimum number of calories she needs to stay on the growth curve - nevermind actually growing enough to catch up to other babies her GA.

After this cheery news, we started talking options. He wants us to pursue an appointment at Lenox Baker (an Speech/Occupational Therapy Clinic). I already had this in the works. He also started using words like g-tube. The problem is all these things take time. Getting into Lenox Baker may take several weeks. If they scheduled a g-tube tomorrow, it could take weeks and weeks to actually get on the surgical schedule. Of course, while waiting for all of this, Natalie continues to NOT eat enough and falls further and further behind. Ditto all of this for Abby.

So, now I have even more to worry about. This day just keeps getting better and better.

One Bad Day

Today things are really tough. I think I'm losing my mind. We've been struggling with the girls' food totals since trying the #2 nipple as suggested by Speech Therapy (ST). Before that, they were hitting 600. The dropped into the 300's with the #2 and now are barely making 550 - on a good day. Today is not a good day.

Today's schedule.
7am - Abby 80mls, Nat 80mls
8-10am - sleep
10am - mommy up - Nat awake - she eats 30mls
10:30 - wake Abby - she eats nothing
12ish - down for a nap - Nat drifts off, Abby never does
12:30ish - Ben home for lunch - Abby still awake and starts crying. Ben gets her up and she eats, after much crying and struggle, about 80mls.
12:45pm - Nat wakes - mommy tries to feed her - she eats 60mls.
1:15pm - Daddy leaves for work, Mommy cries, Abby asleep in swing - a terrible habit I will have to break later, and Nat refuses to eat more and is now playing somewhat quietly on floor...wait, no, now she's starting to fuss. I think she's tired.

So, in 5 hours the girls have eaten only about 5.5 oz for Abby and 5ish oz for Nat. And that's over THREE feeds. They should be taking that in one feed.

Yesterday's doctor appointment did little to make me feel better. Our pediatrician in on maternity leave so this was a different doctor and although he said he thought they were doing okay and he wasn't worried about brain development or anything serious, they really hadn't gained much weight. Abby, at 12.1 lbs, had gained 10 oz since Dec 21 and Natalie, 10.14 lbs, only 9oz. That's only about 3 oz a week, less than half of what "they" want. That news followed by this awful morning doesn't do much for my mood.

I've also been torn over whether or not to stop pumping. I'm down to only 2 times a day, but it's starting to really annoy me. It takes SOOO long - at least an hour. Of course, the guilt is tremendous. Especially with the winter and RSV/Flu, etc., I just feel that the breast milk will help them. On the other hand, I'm really starting to resent it. Every day I decide to quit, then I decide - just once more.

The worst part of the whole thing is that no one can help us. I want to have the nanny come over, but the truth is there's not much she can do. Natalie and Abby are just impossible to feed. Shoot, Ben and I can barely do it and we do it every day. My sister is really the only one who could probably replace us completely for a feed. Dad and Peggy, especially Peggy, have pretty good success. Doy and Richard are gaining some skills, but one of us usually has to finish the baby off. My mom is always helping us clean, cook or do laundry and hasn't perfected her skills yet. None of it really matters anyway since they all live far away. Two hours is the closest, and of course my sister is in New York which is exactly conducive to recuse feeding.

It's a terrible feeling to worry about your babies all the time. Ben is actually a better feeder than I am, which really sucks since I'm the one home with them all day. I count the hours until he comes home for lunch, and then until the end of the day. Only 4 hours to go...

Monday, January 7, 2008

Roly Poly Babies

Mission Accomplished! Sort-of.

Today was quite a big day. Both Natalie AND Abby turned over from back to front today. And - I missed both.

I was feeding Abby while Natalie hung out on the play mat waiting for her turn. At one point I looked up, and there she was - on her tummy. She may have cheated a little. I ha a blanket draped over the arches and she was pulling on it. I think she used it to help pull herself over. Actually, that's rather smart, isn't it? An she had one leg on either side on the arches which may have helped as well. But, I was still proud of her and hopefully now that she's done it once by herself, she'll be inspired to try it again.

I missed Abby's big move while giving Natalie a nebulizer treatment. I looked over and there was Abby on her stomach. She cheated a little too, I think, by pulling on the side of the play mat. She also managed to hook her legs around the arch bar. I think it helps them stay on their tummies and not roll back over.

So, it was a big day in the world of baby milestones. Maybe next time we will be ready with the camera.

Friday, January 4, 2008

One more important present...

I'm not sure how I forgot this...My mom made sure I didn't forget.

The girls also each received for Christmas a very special Raggedy Ann. My Aunt Joyce gave me one for my first Christmas, and I loved it. It was my special "doll" for my whole childhood. I literally wore it out. An arm fell off, the face has faded, and the dog chewed off a leg at one point. The above (except the face) was repaired, but currently Raggedy Annie sits atop a shelf in the girls room with only one leg. The other is tucked under her skirt waiting to be sewn on. I hope Natalie and Abigail love their Raggedy Anns just as much. Maybe one day I can get one for their children.