Welcome to the world of Natalie Kimberly and Abigail Elianna. We were born May 15, 2007 at 26 weeks, 1 day gestation due to Twin to Twin Transfusion Syndrome (TTTS). Natalie was born at 4:09pm at 1lb 5oz (604g) and Abigail at 4:10pm at 1lb 13.5 oz (840g). After spending almost 4.5 months in the NICU, we came home and have grown and thrived. Join Our Journey as we learn and grow!
Sunday, December 30, 2007
Only 366 days til Christmas...
Jo's mom, mema and sister all arrived on the Saturday before Christmas. My mom helped out tremendously, as usual, by cleaning and doing laundry. I promised her that one day she would come and not have to work so hard. She didn't believe me:-) She also cooked Christmas dinner which was good since I had declared I wanted nothing to do with it. If I had been in charge we would have had pizza and chinese food. I'm sure everyone was grateful to mom.
Christmas Eve we went to Aunt Reagan's and Uncle Jeff's for a joint celebration with Ben's parents and Reagan's mom, brother, sister-in-law, sister, and her boyfriend. Oh, and the two dogs and the cat. It was a lot of fun and Reagan prepared a feast. Yum, yum. Again, no cooking for me!
Christmas Eve was also very special as we instituted what I hope will become a yearly tradition. We attended the Christmas Eve 11pm service at Duke Chapel. It was really beautiful. The girls were so good. At first they looked all around and checked everything out. Then Mary Poppins, AKA Auntie Kimmy, managed to get them both to eat and to sleep. They slept through the pipe organ and even the Hallelujah Chorus. It was a beautiful service and a special thrill to be at Duke considering the girls' beginnings. It was also Ben's first time ever seeing the Chapel and he was quite impressed. I do hope this will be a yearly occurrence, although not necessarily at Duke Chapel since we had to get there before 10pm. We always went to Christmas Eve service when I was growing up and I loved it. The 11pm is my favorite. There is something so neat about getting out of church and it's Christmas Day. It's a feeling I love.
Christmas Day was rather quiet. We eventually woke up, hung out and opened presents. We had a lovely dinner prepared by my mom. Ben's parents also dropped by and Grandpa carried out a family tradition by reading the girls "The Night Before Christmas". It was really cute. He held them on his lap and read them the story. They loved it.
Poppy and Nanny arrived later in the evening which means all the grandparents saw the girls on Christmas Day. It really was a great day.
The girls received some greats gifts from everyone. Aunt Kimmy provided a very cool crib mobile with lights, sound, and moving parts. They really seem to like it. Nana AKA Gammy or Grammy (name change:-)) and Mema provided a great rolling toy that encourages children to chase it as they learn to crawl. They also bought the most beautiful Christmas ornaments, although those are mostly for mommy and daddy. Poppy and Nanny are donating money to the girls 529 plan. Grandpa and Ya-Yai got the girls the neatest banks. It counts the money (coins) as you put it in. The kids are going to LOVE them when they are old enough to play with money. They also came with a generous donation to their college fund. Uncle Jeff (NC State grad)and Aunt Reagan (UNC grad), who most certainly picked out the gifts gave the girls their first UNC T-shirts and the cutest onesies with their names on the back and "future tailgater" across the rear end. There were also finger puppets representing her trip to Africa.
Mommy and Daddy did pretty well too. We received a lot of nanny money as well as gift cards for dinners out and the movies. Everyone was very generous and we are very grateful.
Mommy and Daddy didn't do much for the girls this year. There was so little they needed thanks to the generosity of so many before they came home. I am trying to make them special little "lovies" - a stuffed animal/blanket combo patterned after the Lovie brand. I am making them out of a duck and frog (of course). It's slow going, but I'll get them finished eventually.
This Christmas was mostly about being grateful that the girls were home with us to celebrate. It was really wonderful having all our family around. I know next year will be really fun as the girls will be old enough to open their own presents.
As we celebrated the birth of Christ, we could not help but be reminded of the miraculous birth - and survival - of Natalie and Abigail. I sometimes read or hear stories of other 26-weekers and am constantly reminded of how incredibly fortunate and blessed we are. God has been so good to us. Above all, He has loved us so much that he sent his Son to guide and teach and save us. I am so, so glad He did.
Monday, December 24, 2007
My Own Etiquette Hell
One of the best sections is the "Thank You Notes" section. You will be gloriously, wickedly appalled and delighted. Unfortunately, this is where I fall into my own etiquette hell. I'm afraid I have fallen behind in my thank you note writing. To all who have yet to receive your - I'm very sorry. I really am working on them. You will get one eventually, I promise. We really do appreciate all the gifts and cards we have received and we want to thank everyone.
If you are still thinking bad thoughts about me, check out the Thank You Note section on Etiquette Hell and I promise you will realize I'm not that bad:-)
Our babies have found their voices
Something is up with Abby. My personal opinion is that she is getting a tooth. When we try to feed her, she has taken to screaming and crying. She hasn't been eating very well the past few days. Let's see, since we messed things up by trying the #2 nipple actually. Hmmm. I really do think there's something wrong - either a new tooth or ear ache or something. Or she developed quite an aversion to food - which is very bad. Hopefully it's just a phase. We have the only babies I know that cry when they HAVE to eat instead of crying when they are hungry.
Little Natalie is doing slightly better. At least she's not screaming every time. But, she's not sucking well and her volumes are down as well.
I think we have decided to ignore anything else the doctor says. We'll just smile and nod and go home and keep doing what we do. Of course, we don't have another appointment for a while so maybe by then we'll have everything under control and they won't need to offer any advice.
Thursday, December 20, 2007
Three Steps Forward - Two Steps Back
BUT - I'm beginning to feel like every time we visit the SICC, we take two steps back. We always seem to be doing pretty well when we show up. Then, they give us a new idea or new instruction and next thing you know, we are going backwards.
Our newest setback involves, as always, feeding. We have been doing really good. The girls have been taking 80mls about 80% of the time. The visits to the pediatrician showed great weight gain. We were quite excited. I will admit that the girls have been throwing up a bit more. I thought it was due to the increased volume and we not burping well. Sometimes, we knew it was our fault. There were definately times when we would try to force down the last few mls and we would cause them to gag and throw up. The girls have also been choking a little bit with their feeds. It sort-of comes and goes really. There were a few days when they were doing really, really well not choking. Then they would have a few days of difficulty.
Well, when I shared all this with Amanda (the Speech Therapist who is really the sweetest thing ever), she was concerned - especially with the choking. Her suggestion was to start using the #2 Dr. Brown nipple instead of the #3 nipple. The #2 nipple is slower. Okay. We'll try it.
Well, once again, it's been a disaster. The girls just can't suck hard enough to drink enough. Since using the #2, they've had less 400mls per day. That is no where near enough. So, once again, we had scrapped the doctor-prescribed plan and gone back to what works - the #3 nipple. For the last two feeds, they have eaten much better. We will be more careful and try to keep them from choking as much.
Other than that, the visit was good. Abby even made the growth curve! She's now at 10%. Natalie is almost on the curve. Abby weighed in at 11.8lbs and Natalie 10.5lbs. They are getting longer too. Abby is 22.5 inches and Nat 22 inches even.
Also on the good side, the clinic was able to give us lots of free cans of Neosure formula. They also included two coupons for two frees CASES of formula. With my milk production still woefully low, this really comes in handy.
I really do love the doctors, ST, and support staff at the clinic. But, it really seems like each trip becomes an exercise in futility.
Well, it's 12:30am and I hear babies grunting on the monitor. It's time to make the donuts:-)
Saturday, December 15, 2007
Doctor and Feeding Update
Thursday: Eye doctor - ROP check-up
It was a great appointment. Abby's eyes checked out completely mature. They look like full term babies' eyes. She doesn't have to be seen again for 6 months! Natalie also had a good report. She has one that is mature and one that is still stage 1, Zone 3. She will have another check-up in 6 weeks.
Both girls are still at risk for other issues, like lazy eye, even after the ROP is gone. We just have to watch for any odd eye activity and they will continue to see the eye doctor regularly. But, it was a great report and we are very pleased.
Friday: Pediatrician - the dreaded weigh-in
I declare - these girls have their weights watched more closely than a wrestler. The news was good though.
Abby weighed in at 11lbs 4oz! Her last weight two weeks ago was 10 lbs 10oz, so she's gained 8oz which is great. It's still a little less than desired, (12oz would have been better) but it's still great.
Natalie did even better. She weighed 10lb 4oz, up 12oz from 9lbs 8.4 oz! That's terrific!
Since they are doing so well, we are going to take a few days and try a 3 hour feeding schedule. They need to eat about 80mls each time for it to work. They've been taken 70-75ml pretty consistently. The worst time of day is in the morning. They just refuse to eat. Usually they eat well for Ben at 6 or 7am. You would think they would since they haven't eaten on 5-6 hours. But, sometimes, they still only eat 50-60mls. Then, they usually refuse to eat at 8am. We've been getting up at 11am and then only because my guilt propels me out of bed. I try to feed them and they STILL don't want to eat. They only really get going in the afternoon.
Hopefully, we can get them started well, and we can start the 3 hour thing. Feeding every two hours is getting pretty tiresome. The good news is that the plan has been working. The girls are growing and gaining weight. We do have another Duke Clinic appointment next week and this time I'm looking forward to it.
Santa Claus is Coming to Town
So, this is the girls´ first Christmas so, of course, we have to do all the traditional Christmas stuff.
Phase One: Meet Santa
Our plan last Friday was to be on Santa´s doorstep at the mall when he arrived at 10am. We thought this would help minimize germs. Ben had the day off so it should have been no sweat. But, you know what they say about the best laid plans... By the time we fed them, dressed them in their adorable little Christmas dresses, and I pumped, we managed to get to the mall about 11:45am.
Parking near Macy's, we made our way into the mall. As I walked beside Ben as he pushed our tank of a double stroller, I was grinning from ear to ear. Ben actually looked over at me and said I was beaming. It was a big moment for us. This was our first real public outing (besides doctor's appointments). I felt like we were such the little family. It was the kind of moment you dream about when you imagine having kids. It was perfect.
We wondered our way through the department store discovering early on that needing to use the elevator to get upstairs resigns you to some dark corner of department store no-mans-land. We cruised through the mall making our way towards Santa. It seemed fitting to stop for cookies, and besides, I was hungry:-) We reached Santa's doorstep at 12:50 and encountered something unexpected: pagers. Apparently, you get a pager and they buzz you when it's time to get in line just like at a restaurant. We actually arrived just before Santa's lunch break, so we then had to wait an hour before getting in line.
We used the time well. We found a little table within site of Santa's Winter Wonderland, and feed the girls. As expected, we garnered a lot of attention. Going out in public with twins is really quite amusing. On the internet boards I visit, it's often mentioned and some people get irritated and annoyed. One really must maintain a sense of humor. We get a lot of, "are they twins?" Well, yes, there are two of them. "How old are they". Well, they are almost 7 months old" (pause for strange looks),"but they were preemies, so they are actually about 3 1/2 - 4 months old". (big nods of understanding - sometimes with more detailed questions to follow). "Are they girls or boys?" Two girls (sometimes their little dresses aren't visible). Then there are the general comments along the lines of "double trouble", "you have your hands full", etc. We did see two other sets of twins including some boys with their stay-at-home dad. We chatted with one mother for a little while which was kind of nice.
About 1:50, we were buzzed, and took our place in line for Santa. We didn't have to wait long since we were 3rd in line. Santa was great. The girls were perfect. Natalie slept through the whole thing and Abigail was adorable. For the "official" picture, they even were able to make Abby laugh. We forked over the $20 for 2 5x7's and took a few with our own camera. They originally said we could only take 3 pictures???, but once they knew we were buying some, they were more agreeable. I will say the "official" picture was amazing. I'm going to try to scan it in and will post it later if I can.
By now, it's almost 2:30, and everyone (meaning mom and dad) is getting tired. We negotiate our way back through the mall and take our little Santa babies home.
It was really a fun little outing. We felt like a normal family doing normal family things. When we do "normal" things, it always seems a little surreal to me. I get nearly giddy with happiness. As a nanny, I spent a lot of time taking other people's kids to do really fun things. I would always imagine what it would be like when I did the same things with my own children. I am finally getting to live that dream, and it leaves me deliriously happy.
Wednesday, December 12, 2007
a little teaser
My computer is running out of energy, so let me just say that updates and pictures will be coming soon.
Stay tuned - and thanks for checking in.
Tuesday, December 4, 2007
We're famous
Well, I actually received several emails from them stating they researched it and only found one other documented case of di/di TTTS. They think it occurs if at the placenta is differentiating at the exact moment the egg splits (or something like that). I was quite impressed they emailed me back.
Shortly after that, I received a call from the editor of the magazine. She wanted to speak to me about our situation. I left an email for her to call me since that was easier, and today she did!
She is writing an article about it for the January/February issue! Isn't that neat? She agrees that twin pregnancies should all be closely monitored.
I think it's neat that our girls could help make a difference in the medical community at large. We were lucky our OB had us do so many ultrasounds. If she had not - who knows what might have happened. I'm hopeful that close monitoring will become the standard for all twin pregnancies.
What I Love About My Ben
*I love the way he gets up at 6am to feed the girls.
* I love the way he got mad when people were visiting and got up at 6am instead of him. He felt like he was missing his "special time" with the girls and wanted to do it himself.
* I love the way he works hard all day at his job so I can stay home with the girls and we can have everything we need.
* I love the way he comes home for lunch and walks straight in and grabs a bottle to feed a baby before he even sits down to eat.
* I love the way he has a hard time leaving after lunch because he is playing with his daughters.
* I love the way he looks at his daughters with so much love and tenderness.
* I love the way Natalie was smiling up at him tonight - she loves her Daddy so much.
* I love the way he tells me all the time how grateful he is that I work so hard to pump milk for our babies. He is so encouraging and thankful and supportive.
* I love the way he walks in after a hard day at work and immediately begins to feed a baby.
* I love the way missed us when we went to my mom's for a week. By Wednesday night, he had tears in his eyes.
* I love the way he says "my girls".
* I love the way he gets excited when the girls leave him "presents" in their diapers.
* I love the way he doesn't expect me to clean(much) or have a home-cooked dinner waiting for him when he walks in.
* I love the way he thinks I have the hardest job in the world. He's always saying how he could never stay home all day and he is so glad I want to.
* More than anything, I love being on of "his girls."
Monday, December 3, 2007
Daddy is tired
As Johelen had mentioned previously, I took the girls for the day to my parents house in Goldsboro. The girls had a great time with Grandma and Grandpa and even Great Grandma. They all took turns with the feeding, although Daddy had to show his 133t sk1lz at times. I know Grandpa was a little frustrated when both girls refused to drink all of their milk. In his words, "they won". But they did an excellent job and I even got to go to bed at a reasonable hour. Thank you Mom and Dad!
Then on Sunday we took the girls to their first church service at Trinity Baptist where my parents attend. Lots of little ole ladies oooooing and ahhhing at the girls and a good time was had by all. Except Abby who proceeded to uncharacteristically fuss right as the preacher started speaking. Guess we'll have to spike the breast milk with some holy water ;)
I'm glad that wifee was able to have some time off. She certainly deserves it with all the work she does. Hopefully I'll be able to take the girls more often, although Grandpa has got to work on his feeding skills.
Saturday, December 1, 2007
Heavyweight Champions of the World!
In this corner...weighing in at 9 lbs 8.4oz - Miss Natalie!
In the opposite corner...weighing in at 10 lbs 10oz...Abigail!
Isn't that fantastic? They both gained almost 9ounces in the 7 days since their last appointment. We are very happy. The two-hour plan is working, and we finally feel like we don't have to worry ourselves to pieces any more.
Mommy's Day Off
After kissing the girls and Ben good-bye at 8am, I did what all free Mommy's do. I went back to bed. Until 2pm. It was beautiful. Mommy Day began with the only baby-related activity I have this weekend - pumping. Then there was Chinese food and movies. Currently I am drinking champagne and bonbons. Okay, not really. I have chocolate covered strawberries and the cheapest champagne I could find.
I finally have the time to do some things that needed doing - like paying bills, blogging, and putting together the girls baby announcement. What I'm NOT doing is cleaning.
I miss my babies (and Ben), but it really nice having some Jo time.
ps - What is a bonbon anyway? Has anyone ever had one? In the interest of science and trivia, I did a little research.
bonbon - In Europe a bonbon is a candy, the simplest form of bonbon is essentially sugar coated almonds. In the modern era the use of almonds as a centre has declined, and a bonbon can be any confection with a fondant center, often with fruit or nuts, covered in fondant or chocolate, or any other confection consisting of a sweet centre covered by a loose sugar or flavoured coating.[1][2] Although not technically a bon bon in the conventional sense, the term is also used in respect of Fruit Bon Bons, a hard boiled sweet with a soft fruit centre.
Bonbon is also the French and German word for candy.
A bonbon is also the brand name for an American sweet, consisting of a small ball of ice cream, roughly the size of a cherry, coated in chocolate. Sold in cardboard buckets, they are rarely seen today. Bonbons can also be more like truffles, with some type of filling inside.
Just thought you would want to know.
Wednesday, November 28, 2007
Loving through Lexapro
If there were ever a poster-child candidate for PPD, it would be me. With a long history of depression since childhood and a very serious episode 4 years ago that resulted in several hospitalizations, I was a PPD-disaster waiting to happen. When I was very sick, I even doubted whether I should even have children. As there is a genetic component to mental illness, I obsessed over passing on this illness to my children and ruining their lives. Then I read something in a book about parents with mental illness are the most capable of recognizing it in their children and intervening early. That made me feel better.
When I wasn't questioning my right to pro-create, I imagined myself a hormonal, crazy mess during pregnancy. I envisioned myself waddling around the psych ward crying hysterically.
Fortunately, they make this wonderful little drug called Lexapro. It was a life-saver. Since October 2003, I have been depression free! When discussing pregnancy, there was a discussion of whether or not to continue the medication. Research indicates that it is safe during pregnancy and breastfeeding, but you never know. But, there's always a fine line between the possible side effects of the medication and the risks of maternal depression and its effect on the baby. It was decided that with my history, staying on the medication was for the best. There are a few side effects. The one I notice the most is that I tend to not be very emotional. I don't cry very easily or get very emotional. It makes me sad sometimes because I feel like I'm missing out on some of the special bonding moments of motherhood. I feel like I should feel more. For instance, when I look at my little babies, I want to cry, but I can't. I just seem to be almost too balanced - too even-keeled. Sometimes I wish I could just lose it emotionally.
I always wondered what it would be like to live life without medication. I'd been doing so well, I began to wonder if maybe I was cured. Perhaps I had resolved any issues that contributed to the depression or maybe I just outgrew it. I always wanted to see what would happen if I stopped taking it. Now, I know.
By no real design, I sort-of stopped taking my medicine. It wasn't really intentional. I just forgot. I'd miss a day here, two there. I was a little busy taking care of babies. Then my prescription ran out. I'd call in to fill it, and couldn't find time to go get it. So, a few missed days turned into every day for a week or more. And then I started to lose it. Not in the nice, sappy, crying over the sweetness of my babies kind of way, but in the "I want to sit in my car and cry" kind-of way. However, before people freak out, it also wasn't the "drown my kids in the tub" way either. I was just a little - overwhelmed.
So, Ben picked up my meds, I popped a few pills, and now all is right with the world. Mommy is no longer a mess, Ben is no longer scared, and the babies don't know a thing.
So. I always wondered what would happen if I stopped taking my medicine. What I've learned is that I'm one of those people that needs medicine to stay sane. Sure, I'd love to experience a more "normal" range of emotions and have a few weepy mommy moments, but it's much nicer being able to wake up every morning and be able to face the day. My Ben, my girls, and myself are better for it.
God bless Lexapro.
Tuesday, November 27, 2007
We've been saved!
My sister, dad, and mom are suppling a nanny for the next three weeks to help us out around the house! The best part is that it's my neighbor across the street. Kara and her husband, David, have been so sweet and I'm thrilled to get to know them better. Kara is also pregnant and due in April so we have the start of a little play group! She's already a nanny for another family so I feel so comfortable and happy to have someone with her experience to help me out. We have up to 10 hours a week and I can't wait. There's so much I need to get caught up on.
I've also decided to take a more relaxed approach to pumping. My milk seems to be returning a bit, but now that we've found a formula they will eat, I'm going to be okay if they get a few bottles of formula or half and half. For my own sanity, I need to spend more time with the girls and less time pumping.
To my wonderful family - and awesome sister who dreamed up this idea- thank you, thank you , thank you!!!
Monday, November 26, 2007
Getting better
Most of you know, but my sister just happens to be a twin specialist. She specializes in sleep training, but is an expert in all things babies and especially twins. She has worked with hundreds of babies. The help, advice and peace of mind she has given us has been invaluable. I can honestly say I don't know what we would have done without her - especially this past weekend. Sister, we love you so much, and thank you, thank you thank you.
Sister has been incredible at helping feed the girls. Their totals are creeping up and hitting new heights. Check this out:
Nat
M - 405mls
T - 390
W - 355 + breast feeding
Th - 438
F - 575
S - 540
S - 543 so far and one feed left
Abby
M - 502
T - 518
W - 395 + BF
Th - 475
F - 648
S - 593
S - 630 So far and one feed left!!!
They are doing so amazing. They are starting to take 70-75ml for some feeds - especially Abby who has apparently decided she didn't like Natalie getting close to her in weight. At this rate, she will pull way ahead again. When they start taking that much for 4-5 feeds a day, we are going to try an adapted 3 hour schedule. We'll probably do some 2-hours and some 3-hours. Eventually we can move to a 3 hour schedule.
I am so proud of them for doing so well. The new formula, NeoSure, is a godsend. My milk is returning so we are primarily just adding the powder back on top of the breast milk as before. They may get a bottle of formula every now and then, but we are mostly back to breast milk. It's so relieving to know we have an option if my milk takes another vacation.
I am so happy about the girls progress, but there is a part of me that is irritated as well. Not at them, of course, but at the doctors. I am so mad we tubed them those 4 days last week. It was a miserable experience and just sent the girls backwards. The fact that it only took a few days for the girls to get back to and then surpass their previous totals tells me had we NOT tubed them, we would have upped their totals that much sooner. I just wish we had trusted our instincts.
Speaking of, we received a voice mail from Elianna's dad yesterday. Kimberly had lunch with he and Elianna and was telling him about the girls, their eating, weight gain, and the possible g-tube situation. He happens to be a doctor and told her they usually don't worry too much about weight until babies start losing it. He left the most kind voice mail stating what great parents Ben and I were and how great the girls are doing. He said we should continue to trust our instincts. It was very kind and a wonderful reassurance that we are doing okay. It was also nice to hear from a doctor that we aren't causing them brain damage. Thanks so much Adam - you really made my day:-)
Well, it's almost time to feed - again. Sheew - I'll be so glad when we can move to the 3 hour schedule. Feeding every two hours is tough. I always feel like the Dunkin Donuts man. There used to be a commercial which showed him dragging himself out of bed and to work at some ungodly hour muttering, "time to make the donuts, time to make the donuts". That's us, every hour, "time to feed the babies, time to feed the babies". And for me, if I'm not doing that, "time to make the milk, time to make the milk". Hmmm, kind-of makes me want some donuts...
Saturday, November 24, 2007
New Worst Day - Friday after Thanksgiving
First, as mentioned on a previous post - my milk is on vacation. As of this morning, we had one reserve frozen bag left and I had to get up at 7am to pump for the 8am and I barely had enough. In fact, there wasn't enough for the 6am, and Ben had to add formula to it which affected how well they ate this morning. We have determined that the girls hate the Elecare. They have been doing so much better drinking straight breast milk. I have been worried sick about what we would do if my milk goes away and they are stuck on formula they one: hate and nearly refuse to drink, and two: it costs $35 a can.
Second, we had a peds appointment at 9am. I was kind of excited because I felt the girls had done well, especially Abby, and I was excited to see their weights. I was also apprehensive since I knew the dr was in favor of tubing. I have this thing about not wanting to get into trouble. It's very juvenile, but I hate to do things wrong or have people disappointed in me in any way. So, I was a little anxious.
Abby weighed in really well - 10lb 1.2oz. She's gained 6 oz since last Thursday, 11/15. This is great. Natalie, however, had only gained 100grams, just over 3 oz. Ben was with me and we told the dr how much they were eating and she said it still wasn't enough. I told her I'd email Dr. Malcolm to see if he wanted to see us sooner than three more weeks. Ben would later say that he didn't sense any disapproval or major concern. All I heard was, "they aren't eating enough".
We did ask about switching to a different formula and she gave us two different ones to try out. Of course, when we went to Babies R Us, they didn't have either.
When we got home, we walked in and it was just chaos. Our house isn't that big and with my dad, Peg, sister, step-sister, Elianna, and 2 babies, it was a mess. I tired to pump which of course yielded very little. Then I started cleaning the kitchen and things just got worse and worse. I'm not sure how, but soon there was yelling and tears and I hid in my room again.
In the end, we kicked everyone out of our house. Well, it wasn't that harsh (I hope!). We already had a hotel room for Friday and Saturday nights that we had planed to escape to at least one night. Instead, we decided what would really help was to stay in our own house and get things done. So, Dad, Peg, Loren and Kim took the girls on their first overnight and hotel stay. It was wonderful for us. Ben went to bed at 8:30 and slept until 8 the next morning. I organized some baby clothes and pumped a lot. I didn't go to bed until 2:30am but I felt rested the next morning.
The only reason this was able to work was because Kimberly found the Neosure at Walgreens. In a stroke of luck, the girls loved it. Since I was out of milk, they could take it to the hotel and give them formula. It was a godsend - had they refused the formula, they wouldn't have been able to leave.
Saturday night everyone came back to our house and we were the ones who left. They had all gotten us gift certificates to the movies and to dinner. We didn't have time for dinner, but we caught our first movie in months - "American Gangster". Then we went back to the hotel. It was very nice to get away.
The girls seemed to enjoy their special time with Poppy, Nanny, Aunt Kimmy and Aunt Loren. I was so great to leave them in good hands. We can't thank them enough. We really needed a break and a chance to relax. We are so blessed to have a family that is so supportive and willing to help us in any way. We love you guys so much. Thank you, thank you, thank you.
Got milk?
Most people are coming down on the side of stress, and I suppose that's possible. The problem is the less milk I get the more stressed I get. I read something about the thyroid affecting milk production. I did have an under-active thyroid that really needs rechecking. If my milk doesn't return by Monday, I'll probably see a doctor.
Thursday, November 22, 2007
Girls' First Thanksgiving
I actually wasn't especially stressed about Thanksgiving. So what if the house is a mess, the kitchen floor gross and 12 people are coming over. Whatever. I refused to let it bother me. I had my family to cook so it wasn't just me and Ben. We didn't even get started until nearly 1pm. We did a ham and a hen and a bunch of sides. Ben's mom brought some things and Reagan brought several desserts including pecan pie - Ben's favorite. My sister made some low-cal, splenda pumpkin pie which was quite good. I figured we'd eat when it was ready so it didn't stress me much at all. In the end we ate around 6ish and it was all delicious. The good thing about having a dinner at your house is that you get to keep all the leftovers! Mmmmmmmm.
In the end, we had 13 people - and two little people. We were joined by Ben's parents, grandmother, Jeff and Reagan, and Reagan;s dad. On my side we had my dad and step-mom, my step-sister, Loren, my sister, and our little friend Elianna who just turned 11 and who Abigail is named after. Elianna's dad, Adam, also joined us for a little while. We missed my mom and grandma though. It was kind-of crazy and crowded but mostly good. The girls were very well entertained.
It's hard to believe Natalie and Abigail's first Thanksgiving has come and gone. We dressed them in the most beautiful fall dresses my mom bought for them. They were so beautiful and looked like such big girls. They are really the best babies. All those people and they never really fussed or cried. We made sure they had some down time and quiet naps, but they did so well.
All in all, it was a wonderful day, and we truly have so much for which to be thankful. God is very good, and we are very grateful.
Wednesday, November 21, 2007
Our plan is working!
Natalie and Abby are doing great. Abigail has hit 500mls yesterday and will again today. That's the most she's ever taken! We also weighed the girls tonight. I ordered a scale last week (which my sister graciously paid for - thanks sis!), so I could keep up with their weight gain. I weighed them Saturday night, and Abby has gained 4 ounces since then!! That's incredible! On our scale, she has now hit 10 pounds!! We are so proud of her. Natalie is also making progress and is hitting 400ml. She has gained almost 2 ounces since Saturday. She is now 8lbs 14oz!
They are also taking larger volumes. We started giving them just breastmilk (no Elecare) since they seem to like the taste better. Well, I assume that since they seem to eat more of it. Natalie has taken several 60ml feeds and Abby 75ml and 80mls! It's all very exciting. We have high hopes that by next week this time we will be hitting our target totals.
Metric System Solved!
Here's where I went wrong:
Example: When I (ie. the computer) convert Natalie birth weight of 604 grams directly to pounds, I get 1.33 lbs. When I read that, I read 1 lb, 3.3 ounces. However, the .33 part is not ounces, it's .33 of a pound. Now, if pounds were in unites of 10 like the metric system, my initial reaction would have been correct. But, pounds, of course, are in units of 16. So, the .33 of a pounds has to be converted to ounces through a unit of 16. When you convert .33 pounds into ounces you get 5.28 ounces. So, that puts Natalie's birth weight at 1 lb 5.28 ounces. Just like the hospital said.
It sounds silly, but I'm really glad I understand it all now. It was really bugging me that the numbers weren't working out.
Thanks, Richard. Now, we now who's doing the math homework. I think I'll stick to the liberal arts like religion and history.
Tuesday, November 20, 2007
The M.O.M. degree
My first official act is to challenge the M.D. degree. This time, Mommy knows best. My girls are through with the NG tube and the doctors are just going to have to live with it.
Friday night/ Saturday was the worst day since the girls have been home. I mentioned in a previous post the Friday night plan to gavage 350mls slowly. After only 200mls, they had thrown up and I plugged the plug on any more gavage feeds. We were going back to the 2-hour schedule and hope for the best.
Saturday was mostly really, really awful. They ate almost nothing all day. Their amounts were pitiful - 15mls, 20mls, 10mls. It was a mess. It was so frustrating since now we were totally dependent on whatever they would eat. I also hadn't forgotten that whole starving brain thing.
It was definately my worst day, which is pretty awful since I didn't even get up until almost 12pm. There are however, a variety of reasons for this, not all directly related to the girls not eating. If you had to describe me, those of you who know me would likely describe me as very extroverted: bubbly, excited, talkative. I've been accused of being able to carry on a conversation with a brick wall. For those of who you don't know me personally, you can be assured that I am equally as verbose in person as on paper (or computer). The little known truth is that I am actually a "learned extrovert". As a child I didn't really play well with others and happily spent many hours playing by myself. When I reached high school, I made the cheerleading squad, joined a bunch of nerdy clubs (like Peer Facilitators) and I forced myself to master the art of conversation. Well, my mastery of it may still be up for discussion, but I did manage to pass myself off as an extrovert. I even passed those little personality tests under extrovert. But, beneath the surface lurked my introverted self in need of plenty of time alone.
By Saturday, I had been surrounded by people for over two weeks. My sister had arrived two Fridays before and we went to my mom and mema's. I spent 9 days there. Ben and I traveled back on Saturday, and Sunday was the only day that was just Ben and I and the girls. Monday, Ben's parents stopped in for a visit. Tuesday, we had a 4 hour doctor's appointment which ended with the reintroduction of the NG tube. Wednesday, Ben's grandma arrived to stay until Saturday. Saturday, Ben's parents, Jeff and Reagan all came over for Grandma's birthday and to see the girls. So, I had not had a single day to just myself (and my girls) in over two weeks. Add to that the stress of the girls needing re-tubing and their new refusal to eat, and my inner introvert was screaming to get out. So, I did what all stressed-out, introverted people on the verge of a nervous breakdown do - I hid. I went to my room and hid until everyone was gone. Shameful, I know, but necessary. I just couldn't handle it any more.
Fortunately, the girls took pity of me. After attempting to breast feed Abby and seeing her interest in it, I decided to try a bottle of straight breast milk. She sucked down 75mls. She only took 25mls at 10pm, but followed that at 1:30am with 80mls! Natalie had a similar reaction: 85mls, 60mls, and 50mls. Sunday, we continued the Elecare-free Breast Milk, and Abby took 412mls and Natalie 445mls. This was more than their totals for the three previous days COMBINED. We started add ing some Elecare back to the milk for the calories and the girls continue to do well. They have each had several 60ml feeds today and will pass 450mls and inch close to 500mls for the day.
We still need another 100+mls per day, but we are getting much closer. I am not especially looking forward to telling the doctors we are NOT tubing the girls any more. I know I'll get resistance. But, I also know that my girls will not progress on the tube and are doing far better without. I have every confidence that had we continued on our 2-hour plan last week, we would have been where we needed to be by now.
There are times when parents have to trust their instincts. There's probably no data, but I would suspect the number of children who have been saved by their parents' gut feelings numbers in the hundreds of thousands. When it comes down to it, a M.O.M. degree isn't worth all that much. It doesn't get you a better job and you can't take it to the bank. But, it does empower you to fight for your children for what you think is right for them. It's said that possession is 9/10ths of the law. Let's hope that works in medicine too, because Natalie and Abigail are MINE, and this time, Dr. MOM is in charge.
Saturday, November 17, 2007
This just isn't working
The girls are struggling so much with their tubes. We have tried several combinations of amount versus time given for their gavages and we just can't get it right. They keep throwing up. Tonight's (Friday night) plan was to gavage 350mls at 70 mls/hour until finished - about 5 hours. We started at 10pm. I checked on them several times, and when I checked at 1am, they had both already thrown up after only 200mls. They were both also very nasally congested. This is just ridiculous. I stopped their feeds and will give them about an hour then pull their tubes to let them recover.
I've been doing a bit of research on the net. The doctor says Natalie needs 550-600mls of milk a day and Abby, 600-650mls. I found one source specifically for low birth weight infants that makes the following recommendations:
8lbs - 15-18oz or 432-540mls
10lbs - 18-23oz or 540-675mls
12lb - 22-28oz or 654 - 825mls
When you look at the numbers, especially for Natalie, we were getting so close to those totals with our two hour feeding plan. We were approaching 400mls and I feel confident they would have only continued to progress.
Since starting the gavages, the girls have taken less than 200mls each day. Today they took less than 100mls by mouth. They simply won't eat. I will grant that they had shots yesterday and have been running fevers that could affect their appetites. However, they often act hungry, begin to suck on the bottle, then stop and let hte milk run out their mouth. I think their throats are sore.
Personally, I'm ready to go back to our 2 hour schedule. We bought a scale and can weight them and monitor their weight. Maybe we can tube them two days a week to help them maintain. All I know is my children are miserable, we are miserable, and all the progress we were making has just gone right down the drain. Remember when I said I was mad. I think I'm actually furious.
Tomorrow is a new day, and I can't wait to start over and get our babies eating again. I know we can do better than this.
Friday, November 16, 2007
Happy 6th Month Birthday!
The 6 month mark feels like some kind of milestone. There were certainly days when we weren't sure if Natalie and Abigail would ever see 6 months. For me, I think the scariest days were those 10 days between when we found out about the TTTS and their birth. There were so many questions and possible scenarios - and few of them were good. I remember the most horrifying thought was the possibility of having to choose to let one baby die so the other might live and be more healthy. Even the idea of having to choose was heart-wrenching. For us, we would have never allowed one baby to die to save the other. We would have delivered them both and hoped for the best. For me, it was the hardest decision we never had to make. I was almost grateful when circumstances deteriorated to the point where delivery was the only option.
I actually felt a great sense of relief when the girls were born. The fact that they were born alive felt like a victory for me. I felt like they were better off outside the womb in the hands of the doctors than inside of me where there was little that could be done. Outside, at least there was a chance.
Once Natalie and Abigail were born, I don't think I ever believed they wouldn't survive. Memorial Day weekend, when they were so sick and really on the brink of death, Ben and I had no idea so we never really had to panic. My concern was primarily how they would survive, rather than if they would survive. I worried about whether they would spend their lives in pain or unable to do the things that other children do. The early days when they were on and off the vent, CPAP, and nasal canula were the worst. I worried about their lungs and if they would ever learn to breathe of their own. Once they mastered that, I was sure everything would fall into place. That was also about the same time they started getting really cute. They started to look like real babies and they were gorgeous. I hate to brag, but everybody thought so. All the nurses raved and raved about how beautiful they were. Okay, actually, I like to brag:-)
There were so many days when everything seemed to go exactly the right way. They were doing so well they moved to TCN at Duke. They started trying to bottle feed and breast feed with great success. The were gaining weight like champs. We were so encouraged and sure they would make it home even before their due date. Everything seemed perfect.
In some ways, the last 10 weeks in the hospital were the most frustrating. The girls were moved to Durham Regional on July 23 while I was in NYC with my sister. From then on, everything seemed to go downhill. They made so little progress while they were there. In fact, they got worse. I can honestly say, they left the hospital in nearly the same condition in which they arrived. My biggest regret in that I didn't fight harder for them to come home on their due date. The additional 4-6 weeks they stayed were completely useless. I think the doctors would still have them there trying to get them to eat if I hadn't insisted.
We had such high hopes for success in eating once they came home. Things started so well with Natalie, but have sadly not progressed as we hoped. Abigail was and remains a challenge. Sometimes I wonder if that extra time in the hospital did them more harm than good. I wonder what would have happened if they had come home earlier.
In any case, here we are at 6 months old. The girls have been home for 2 months and they are a delight. They are so beautiful and so much fun. It's so amazing watching them discover the world around them. They are really the most perfect babies. They sleep well, rarely fuss or cry unless really hungry or in pain, and are happy and smiling. Despite the moments of heart-ache, we are so blessed by the most amazing, precious babies. Being a mom is an amazing feeling. Even though I still feel like I'm on an extended babysitting job at times, I can't imagine being anywhere but at home with them. There is truly no where else I'd rather be.
Thursday, November 15, 2007
Welcome Grandma
Pictures, Pictures
Finally, finally there are new pictures on the photo site. I will continue to add more in the next few days.
For those interested, I also posted the videos we took while learning baby massage. If you have baby or young children, you can watch the videos and try it out.
We have quite a few videos we need to add. The girls are just getting so cute. They have been talking and talking and cooing and smiling. It's just so sweet. The videos do take a bit longer to upload, but I'll start working on it this week.
Enjoy our beautiful babies - we sure do:-)
Tuesday, November 13, 2007
Weight Update
Abby: 9lbs 4oz.
Natalie: 8lbs 4oz.
Abby is still a pound ahead, but Natalie is catching up. When you look at them side by side, it is easy to tell the difference. When they are a part it is a different story. If Ben is holding one and I walk into the room, I have a hard time guessing who it is. I'm wrong half the time. They really look so much alike. If Natalie ever really catches up to Abigail, we're going for tattoos.
Feeding Schedule - Take #54
Today was check up day at the Special Infant Care Clinic (SICC) at Duke. I was so excited going in. I finally had good news to report. The girls have been eating so well and have made great progress in the 10 days since the 2-hour schedule started. They've already added 10mls and were up to 40mls per feed. I was anxious to see how much weight they'd gained and put the g-tube on hold.
The only good news of the day was that they had gained weight. This is only good because gaining weight is better than losing weight. However, the change was minuscule. In the 18 days since they were last seen there, Natalie gained about 250grams. Abby only gained 125grams. They should have each gained over 500grams. Despite their oral progress, they just aren't getting as many calories as they need.
I actually knew this, but had decided that as long as they were gaining weight, I was okay with them being a little small. What I didn't know is that the whole calorie/growing thing is less about gaining weight and more about the brain. It seems the most crucial period of growth of the brain is the first 6 months and first year. This is determined by the head circumference. As the brain grows, it pushes the plates of the head apart and the skull gets bigger. I did know, of course, that the brain grows and the skull grows; I didn't realize it was directly related to the caloric intake. So, basically, their little brains have been starving. The doctor didn't say this, of course. That's my mommy-guilt talking. But, essentially, that's the danger. We'll let our imaginations run wild with all the horrible things associated with poor starving brains. I'm not sure how I missed this rather crucial piece of baby development. I don't know if it was just never mentioned, or I just didn't hear it. In any case - let a new feeding schedule commence...
So, they need about 600mls of souped-up breast milk a day. On our previous schedule of 10 feeds, they'd have to eat 60mls each time. Not likely to happen. On a 3 hour schedule of 8 feeds, they'd have to eat 75 mls each time. Definitely not going to happen - at least not in the next week. Keep in mind that the bigger they get, the more they need. That's why it feels like we are fighting a losing battle. Just when/if we reach one goal, the goal changes.
The doctor wants us to feed every 3 hours, 4 times a day with the hopes of getting 200+mls of milk. Then, we are to gavage 4 times during the night with 100mls over 1 hour each time to equal 400mls. If they can handle it, we'll go to 120mls gavaged. It's with a heavy heart I announce we are back on the ng (nose tube). Now, both girls need it. The doctor wants us to just stay on a straight 9, 12, 3, 6...schedule, but that means I have to stay up until 3am to start their feed and then wait until 4 to stop it before I can go to bed. Then I would have to get up at 9 to feed the girls. That's never going to work. So, we are trying a modified plan as follows:
6am - 100ml gav
9am - 100ml gav
12pm - 8pm - bottle as much as possible
10pm - 100ml gav
1am - 100ml gav
At least this is the plan for tonight and tomorrow. We are going to try to work out something that allows Ben to actually bottle feed the girls at 6am. It's his special time with them and he likes it. I have to say it makes me very proud, because he could be very lazy and just do the gavage. It's much easier. You just pour in the milk, hook up the tube, set the pump and press go. I'm not quite sure how it will work trying to bottle feed at 6am. You can be sure Schedule #55 is around the corner.
BTW, we haven't actually tried 55 different feeding schedules. I was just trying to make a point by picking an arbitrary large number. We have probably changed the schedule about a dozen times so I guess it just feels like 50.
Oh, one more thing to top off the day. Abby has her first ear infection. If nothing else, this proves she really is my daughter. My ears are so scarred that when doctors check them, they make funny faces and say "your ears just don't look quite right." The doctor said that they probably didn't drain properly after her cold. So it's a round of antibiotics for Abby and one more med for mom and dad to keep track of. Thank goodness for Microsoft Word and the "Insert Table" function. Where, of where, we would be without charts!
A baby's cry - A mother's pain
It just breaks my heart to put them through it. As I listened to them cry, I also struggled to understand how anyone could willfully hurt a child without a medical reason. How can a person listen to the cries and wails of a child, especially an infant, while he or she is hitting or harming that child? It's just inconceivable to me. At the same time, as I listened to my little babies cry, I was strangely grateful. However much I hate, and however much they hate it, putting in a nose tube is fairly benign. There are far worse things that I could have to do, and that they could have to endure, if they were not so healthy. I think often about some of the other babies we saw in the NICU and we know our girls are so incredibly blessed and fortunate. They are really very healthy and things could be so much worse. Even as I shed tears at the sound of their cries, I give thanks that their tears will be short-lived and, as Ben reminded me, this too shall pass.
Monday, November 12, 2007
Roly Poly Natalie
Natalie first rolled over on the couch. My mom saw it first. She was so excited, but Ben didn't believe her. Plus, there was the possibility that the unevenness of the couch helped her cheat a bit. So, they put her on the floor to see if she would do it again. Now, let me pause to say that this would have been the point at which I would have grabbed the camera/video camera to document this momentous occasion. Unfortunately, this obvious opportunity didn't occur to either my mom or Ben. *big sigh* It would have been perfect too, since she flipped over again! So, now I've missed it twice, although we did decide it wasn't a fluke.
When I arrived home, I heard the great news. I suppose it's karma really. As a nanny, I'm afraid I've witnessed several "first moments" instead of the parents. We tried and tired to get Natalie to flip over again Friday night, but of course she didn't. Fortune did smile on Saturday though when I did get to see her do it - AND I was there to get it on video!
I was beginning to think it was a fluke since she had not turned over since - at least 3 weeks. Yesterday, however, she did it again. We weren't really watching her closely, but we sort of caught it out of the corner of our eyes.
Abby has not yet managed to copy her sister, but I think she's very close. You can be sure we (meaning I) keep the video camera close at hand.
I'll try to post the rolling over video on the picture site. Even if you aren't impressed by her skills, you can get a kick out of the squealing of the adults.
Saturday, November 10, 2007
By George, I think We've Got It!
This is tremendous progress, especially for Abigail. She had been tube-free for 10 days! This is a new record. She has never been able to take so much by mouth for so long. Natalie has had 400+ml days in the past but not consistently. We are so proud of them!
As strange as it sounds, the new schedule is actually easier on Ben and I. It is no where near as stressful as before when we were trying to fight them to take 50-60mls or more and failing miserably. It still takes about an hour to feed them both (1 person), but at the end of the hour we have success, and it feels so good. We also get more sleep. At least I do. I think Ben is about the same. I am able to go to sleep between 1am and 2am and can sleep until 9:45am. Ben is doing the 6am and the 8am which helps me tremendously. Even though I went to bed after 3 am this morning, I awoke bright eyed and bushy-tailed and ready to hug the day!
The one downfall to the schedule is that is it pretty hard to get anything done. Since it takes an hour to feed both girls, I only have an hour between the end of one feed and the beginning of the next. Right now those hours will alternate between pumping (which takes AT LEAST 30 minutes) and playing with the girls. If I can work it right, they will nap the hours I pump. Then they nap between every other feed and we play and exercise every other feed.
I, for one, am feeling really good about our prognosis right now. I feel very confident that we will be able to avoid the g-tube for Abby. As long as they continue to gain weight, we should be fine. We will just continue to try to get them to take an additional 5mls every few days. If they reach a point where they can take 50mls we may try moving to a 2.5 hour schedule and increase the amounts more. Then we can hopefully move back to a 3 hour schedule in the future .
Thanks for all the feeding prayers. It's still a struggle, but we are making progress and we are feeling happier!
Monday, November 5, 2007
Feeding Schedule - Take #53
Our goal is to get them to take 35ml (just over an ounce) every two hours from 6am to 12am. They will sleep from 1ish to 6am. After looking at their charts, they eat so pitifully at the 2 or 3am feed that it just isn't worth the energy, frustration, and lack of sleep to fight with them to eat 15mls. Ideally, they will eat 40ml or more at the 6am, since it has been longer since they ate. Even if they don't, on this plan, they should get at least 350ml a day - just over 11 ounces.
There are several reasons for this plan.
For Natalie: She is just completely inconsistent in her daily intake. Sometimes she will do 400-450mls, but sometimes it's only 200 or 300. I'm hoping this will allow for a consistent intake amount.
For Abby: We are trying to avoid the ng tube and the move to the g-tube. Also, her stomach study Tuesday revealed that her stomach empties VERY slowly. She drank only 30mls for the study and it still wasn't out after an hour. Our theory is two-fold: one: she has a hard time eating more because she is filling up, and two: she's not hungry later because what she is eating is staying in her stomach. Although Abby is getting less than she has been by mouth AND gavage, she is eating far more by just mouth than before.
The other consideration is Ben and mine frustration levels. It is SO hard to struggle, struggle, struggle with them to get them to eat the 50-60mls the doctors want. It usually takes at least 30 minutes per child and most of the time it's awful. Also most of the time it's futile anyway. They eat what they eat and when they don't eat and we watch those totals fall short every day, we just worry and worry about them gaining weight. This way, we only have to fight over 35mls. usually they take it, although it can still be a struggle. But, at least in the end we are usually successful.
Stay tuned...the new winter schedule may be just around the corner!
First Road Trip
Normally, we wouldn't travel so far with the babies, but Mema fell about 2 months ago and can't travel yet. It had been so long since she'd seen the babies. It was just so important for them to be together.
It was great having Aunt Kimmy and my mom to help over the weekend. Kimberly had to go back Sunday, but Mom continues to be very helpful. I've even had long stretches of sleep. I think my mom is getting tired though. We are supposed to stay until Saturday, but secretly she may want to us to leave earlier so she can get some rest! (She'll kill me in protest when she reads this:-))
Since we are here, that obviosuly means Ben is home alone. He has been enjoying his rest, but he misses us quite a bit. Anyone want to place bets as to whether or not he comes to get us BEFORE Friday? I get half the take.
My mom, being the resourceful person she is, set us up with an appointment with the infant massage therapist at the Childen's Developmental Services Agency (CDSA). I have a case manager for the girls in Durham, but the one here has the only licensed massage therapist in the state. And, my mom just so happened to have worked with her before. It's great being connected! It was really great and the girls did great. They were so good we fit what would normally be 4 sessions into one hour. She was abe to show us massage for the whole body. I video taped it so I could remember the techniques later. I'm very excited about and hope it will help their gassiness, reflux and digestion.
I will try to keep up with posting this week. I was hoping to work on pictures this week too, but they aren't on this laptop, so you will all just have to wait. If I can post any I'm taking this week I will.
Thanks for tuning in!!
Thanks Anonymous!
Thursday, November 1, 2007
The *&%!@ Metric System
So, we get weights in grams and in pounds and ounces. Recently, I began noticing a discrepancy between the various scales they are weighed on and the lbs/ozs conversion. So I started doing some converting on my own. Now, I'm very confused.
An example...
Natalie birth weight: 604 grams. We were told that was 1 lb 5 oz. If you go to a conversion site and convert grams to ounces you get 21.30oz. If you do the math: 21.30-16(oz in a pound)= 5.30oz left. So - 1 lb 5 oz. However, if you convert from grams directly to pounds you get 1.33lbs. If you google (this is a new trick to me) "604 grams to ounces" you once again get 21.30oz. If you google "604 grams to pounds", you are back to 1.33lbs. If you multiply 604 by 0.0022(a conversion formula given by one site) you also get 1.33lbs.
(Abby's stats are either 1 lb 8.5 oz or 29.6oz = 1 lb13.6 oz (also what the hospital said. 840 * 0.0022 = 1lb 8.4oz.)
If you are still with me, you see my confusion. How is it possible that you get different answers if you go straight to pounds versus subtract the ounces? If there are any scientists willing to enlighten me, please, please, please save me!
So, now when I get their weights, I still have no idea how much they weigh! I think I'm going to go with the straight conversion to pounds since that also matches the formula conversion method. With that in mind, I changed the girls weights at the top of the page. Now, their survival and journey is even more incredible.
The Eyes Have It
Natalie had the best report. The ROP is gone in her right eye, although it is not completely mature. Her left eye is completely mature. Abigail is "looking" (he-he) good, too. Both eyes still show Stage 1(of 3), Zone 3 (of 3). It's the same stage/zone as her last check up but the doctor said they look better. I guess there are various stages of Stage 1/Zone 3.
All in all, a great report. So good they don't have to go back for 6 weeks! It's really amazing they have done so well, especially Abby. She was so close to surgery two different times. Considering that almost everyone in our families wears glasses, the girls are probably doomed anyway, but at least they don't have to worry about ROP.
Boo!
Babies' First Halloween!
Our first official holiday - at home at least. I really wanted them to have some kind of little costume but I didn't want to spend a lot of money on it. My mom found some at Babies R Us, but they were too big and too expensive. Saturday afternoon, while Poppy and Nanny watched the girls, we went to Party City to check out their offerings. Everything they had was too big and too expensive. But, Ben was at Old Navy and called to say they had onesies for 50% off! Now, that's my kind of shopping.
I have to say I was quite impressed. In addition to the little onesies for infants they had other costumes as well. At 50% off they were quite a deal. Note to self: don't forget to check Old Navy for Halloween costumes. Second note to self: Wait until the weekend before when everything goes on sale!
So, we got the cutest little onesies for the girls for only $3.75 each. Perfect. Natalie's is white with a black cat and black writing that says, "I'm so cute it's scarey". Abby's is black and has a white ghost and white writing that says, "Daddy's little Ghool". Very cute.
On Saturday, we dressed the girls up, put them in their stroller and with Poppy and Nanny in tow, trooped down to the vegetable stand just down the street to get baby pumpkins. We picked out perfect little Nat and Abby size pumpkins. We had grand plans to crave them, but that didn't quite happen. Next year can be their first carved pumpkins.
Tonight (well, last night now) our friends Michael and Lori came over for dinner and smore's by the chimenea fire. The girls dressed again in their little outfits and we took pictures by the fire.
All in all their first Halloween was a success - if by success you mean they had costumes and pumpkins. Maybe next year we'll hit the neighbors up for candy:-)
Speaking of...here's my halloween rant.
So, it's nearly 10:00pm. We are all gathered on our side deck munching on our smore's. A car drives by and stops. Three children come up the steps, knock on the door, and present their bags for candy. Here's my problem.
#1 - It's 10pm. Seriously. Shouldn't these kids be in bed? It's a school night. Even if it wasn't, who goes around knocking on people's doors at 10pm. In some places that will get you shot. I know people who go to bed before that.
#2 - No costumes. Not a one. I, being in a jovial mood asked the kids where their costumes were. One boy, about 8ish, said "I didn't want to wear one." Hmmm. Isn't that the point? So, I told him to wear one next year. No costume, no candy. Yep - I really did say that. And then the mother SHOUTS from the car, "they'll wear one next year!" Alrighty then.
#3 - Note that the kids are driving around IN A CAR. They didn't live in our neighborhood. There's no telling where they lived. They were just cruising neighborhoods for candy. When I was a kid, we did go trick or treating in a car. But that was when we lived in the country in the middle on no-where. Mom and Dad would take us to a few church members houses. I remember the days when you never went to strangers houses - only the ones you knew. Of course, those were the days of razor blades in the apples. I suppose the kids could have lived in the country. But, since we are miles from anything that constitutes "country", I somehow doubt it.
#4 - This is small, but as long as I'm complaining...They only;y had grocery store plastic bags for the candy (which were rather full, BTW). Ben commented on this. I think even the presence of a plastic pumpkin bag would have at least showed some hint of trick-or-treat legitimacy. As Michael said, "there's a fine line between begging on the street for candy and trick-or-treating."
The kids are lucky I didn't answer the door. That may not have gotten any candy. My only solace is that Ben only gave them one piece of candy. And, it was crappy candy. I accidentally picked up bananna Recee Peanut Butter Cups. Ugh. Who thought up that idea, I wonder. On second thought, we should have dumped it all in.
Next time children come tp my door at 10pm, I think I'll go ask their parents in their car what in the world they are thinking...
In honor of seeing "It's The Great Pumpkin, Charlie Brown" last night...
Good grief.
Wednesday, October 31, 2007
I'm Baaack...
So, get your scrolling finger ready and enjoy...
Tuesday, October 30, 2007
The $134,000 Question
We'll start at just before midnight...
11:45pm - prepare for 12am feed
Pull out bottles and put in water to warm. Draw meds. Tube Abby (worst part). Comfort crying baby. Lay Abby down. Start gavage feed.
12am - 1am Feed girls
Pick up Nat. Give meds. Start bottle and hope she eats. After about 20 minutes, she quits. Put down. Take break. Try again. Repeat as needed. Somewhere during the hour, pause Abby's feed and push her meds.
1am-1:30-45am
Pump, pump, pump while watching shows on DVR. Current favorites: Ramsy's Kitchen Nightmares; Top Chef; America's Iron Chef and America's Next Iron Chef; Meercat Manor; Will and Grace
1:45-2:45am
Variations: continue to watch tv; try to blog; surf net; attempt to do paperwork (bills, thank you notes, etc) and realize I'm too tired; clean bottles, nipples, and kitchen; make bottles for rest of night; try to go to sleep before 3am feed - usally big mistake since I can barely drag myself out of bed.
2:45-4am
repeat 12am feed with the variation of usually falling asleep while holding and trying to feed girls. Also, add extra frustration of Natalie being too sleepy to eat in the middle of the night
4ish - 8:45am
Sleep
8:45am
Try to drag myself out of bed for 9am feeding. Usually fail. Success by 9:30 or 10m.
9am (if lucky) really 10am - 11am
Untube Abby; Prepare bottles, meds, etc. Feed Nat. Nat quits. Put Nat down. Feed Abby. Abby quits. Put Abby down. Feed Nat. Repeat until bottles are finished or one hour passes - whichever comes first.
Day now started, usually an hour behind. Girls awake. I need very much to pump. Put girls on floor - hope they play while pumping for about 30 minutes.
12 NOON - Mommy's favorite time of day. Daddy comes home for lunch!! If on schedule, help feed at 12:00. If off schedule, Daddy plays with girls while mommy pumps (if I haven't been able to). Try to start 12pm feed at 12:30 to get back on schedule. Repeat feeding schedule with Ben's help.
1:30ish - play with girls
2:30ish - probably need to pump again. Girls either went to sleep after lunch and are now up or have fallen asleep and I can pump.
3pm - try to get back on schedule. Prepare bottles, meds, feed Nat; feed abby; feed nat; feed abby, etc.
4ish - 6ish - hopefully find time to play with girls and pump.
5:45 - prepare for 6pm feed.
6pm - Ben walks in to save the day! Feed girls
7ish- 8:45 - play; pump; eat something
8:45pm - prepare for feed
9pm - Feed girls
10pm - Ben to bed; girls to bed;
10ish-11:45pm - Mommy pumps; pretends to do paperwork, but too tired and usually just surfs web; tries to post, but finds it hard to be clever since I'm too tired.
11:45pm - Print girls' schedule (feeds, meds, charts to record amounts taken) for next few days and Start all over.
It's amazing how quickly the two hours pass between the end of one feed and start of another. In fact - it's 11:50pm, and time to start the day...
I'm still waiting for my check...
Friday, October 26, 2007
Feeding update
Here's the latest...
Abby has not been progressing as hoped. She hates her NG tube. She refuses to eat well when it is in. It had become a Catch-22. She can't get rid of the tube because she isn't eating enough. But, she won't eat enough with the tube in. So, she can't get rid of the tube. You see the dilemma. So we have a new plan.
Currently, we are tubing Abby only at night. She receives a gavage only feeding at 12am, 3am, and 6am. We give her 120mls over 1 hour. If she tolerates that amount, we will increase it to 150mls. After the 6am feed, we will take out the tube and give her a bottle from 9am to 9pm. During the day she needs to average 45mls per feed. If she does this, she will get enough calories and hopefully gain more weight.
This little plan is actually a temporary fix. We have decided to go with the G-tube. If you remember, that will be inserted surgically, directly into her stomach. We will probably follow a similar schedule of oral feedings during the day and gavage at night. The benefit is that the tube will be out of her throat and we won't have to put it in and out - which is a very uncomfortable procedure for Abby and emotionally awful for us. She first has to get a gastric emptying study (looks at how the stomach empties) so she can then be scheduled with the surgeon. We have no idea how long that will be. Hopefully only a week or two more. There is a chance she will improve considerably on the new off days/on nights schedule and we won't have to do it at all. We can only hope.
Now, for Natalie. I had thought Natalie was doing quite well, but when I looked at the data in my nifty little charts, I realized she was falling short about 150mls per day. That's quite a lot. When a pediatrician appointment Tuesday revealed she's only gained a few ounces, we decided to tube her at night as well. We just hated doing it. So did she. I was so worried we'd have to consider a g-tube for her as well. It felt so awful going backwards.
The good news is the doctor today at the Duke Clinic was okay with her weight gain. He said we did not need to tube her at all. Instead, we are adding more Elecare to the breast milk to make it more caloric. Since she's getting more bang for her buck, she can eat less. She still needs to average about 50ml per feed. She should be able to do this. (Abby is also getting the souped up breast milk.) We are hopeful this will keep Natalie heading in the right direction. If we don't feel we have to force her to eat so much, maybe her feedings will be more pleasant and maybe she'll eat more.
Woo - that's a lot of rather technical info about eating. Bottom line: Nat - doing okay. Abby - not as good - getting g-tube soon. Stay tuned for updates...
Gotta Love Grandma
In early October, Ben's mom came to stay from Friday to Tuesday. She was great with the girls and they had a wonderful time getting so much attention. Ya-Yai also helped with cooking and cleaning and laundry. Yeah Ya-Yai! She also stayed up late with me to help with feedings. Between feeds, we bonded over cooking shows late into the night!
After Ya-Yai, Nana came for the weekend. It was a wonderful relief since I was having serious issues with my milk (see post below). She also helped with cleaning and laundry and feeding. My mom is also a former infant child developmental specialist. That's a long title for "person who knows lots of stuff about infants and what they should be doing when". Well, maybe that's the short way:-) Nana was very helpful in showing us exercises to work on with the girls and evaluating how they are doing developmentally. It was the first weekend Nana had been able to come in a while and she had a great time. The girls were once again thrilled with all the attention.
Finally, last weekend, Nanny was here for a visit. (Poppy was here too, but we are talking grandma's right now:-)) It had been several weeks since they'd seen the girls and were of course surprised at how big they are now. Nanny is amazing at feeding the girls. I don't know what she does, but the girls eat so well for her. There are several houses for sale in our community...I've been trying to get them to buy one and move in! Of course, the girls were once again entertained, held, and loved all over.
The girls really are lucky to have grandparents so close that they can visit so often. The fact that we could be in Maui right now, is never lost on me. Although paradise would have been amazing, we would have desperately missed our extended family. When I see the grandparents with the girls I am so grateful we are here and the girls will grow up knowing their grandparents. I can only hope they have as close a relationship as I have with my amazing grandmother.
Look Ma - no hands!!
First of all - let's all take a moment and be thankful I didn't post MY picture wearing this contraption.
So - what is that thing, you ask. Well, it's my new time-saving toy. It's a hands-free breast pumping bra. It's wraps around (gotta love Velcro) and the sucker cups go through these littles holes and... Well, you get the picture. It really does work. I can do things with my hands - such as type - as I am right now. Actually, using pump time to blog was part of the reason I bought it. That and trying to not develop carpel tunnel syndrome. I can also play with the babies in a limited way if I need to - at least enough to comfort them.
While on the subject...remember the freezers full of breast milk? ALL GONE. There are two little bags left in my freezer that I'm saving for an emergency. Last week was awful. I've always had a ton of milk, and suddenly, it seemed to disappear. I was freaking out. Not only did I feel guilty for not having pumped more in the weeks before, I was imaging the $500 a month we'd have to spend in formula. It was awful.
Fortunately my mom was here two weekends ago and while she and Ben concentrated on feeding the girls, I pumped all the time. That wasn't much fun either. But it was more fun than running out of milk. The good news is it seemed to do the trick. Things are better now. The children won't starve. This is very good.
Saturday, October 13, 2007
What were they thinking...
"The Most Smartest Model"
Seriously. I'm not kidding. I'm not sure if this is irony or what. The goal is for the models, stereotypically not the brightest bunch, to convince the host they are the "most smartest". Who thinks of these things?
So, for those confused as to why I find this hysterical...an English lesson.
One can not be the "most smartest" anything. One is either the "most smart" or the "smartest". To be the "most smartest" is redundant - and terrible grammar. Perhaps the first challenge of the show is for the contestants to figure out the title of the show is grammatically incorrect!
Perhaps the show should be called, "the most smartest copy-editor, producer, or tv executive"!
Schedule/Smedule
Basically, the girls needs are to consume enough ml of milk each day to gain weight and grow. Abby is supposed to get at least 600ml and Natalie about 480ml.
Our needs include sleep and maintaining our emotional stability. The concern for the later comes from the frustration we experience over their feeding issues. It's just so hard to struggle with them to eat. We worry about them eating enough or not eating at all. We also worry about them spending too many calories while they are eating since it takes so long for them to eat by mouth. It's a balancing act between calorie intake and calorie expenditure. One of our biggest worries is over Abby, her tube and its pros and cons. Obviously, it's good because we can make sure she gets the amount of food she needs. But, it is also really easy for us to be lazy. It much easy to hook her up than struggle with her to eat for half and hour. Plus, I'm not so sure it doesn't make her lazy. Maybe she can figure out that she gets full whether she eats or not. Our biggest concern is whether the tube contributes to her not eating orally. In other words, does the irritation of it make it more uncomfortable to eat therefore reinforcing the oral aversion. The more we have to feed them, the more frustrated we feel.
So...we are trying to work a schedule that allows fewer feedings during the night (sleep) and maybe fewer feeds (7 per day). We are trying to push the night feeding to 4 hours. So, we would feed at 2am so I'm asleep by 3, and then Ben would feed at 6am and could then go to work at a decent hour (instead of 10:30am). I would feed them again somewhere between 9 and 10am.
After all this scheduling, I can understand why people pay my sister the big bucks to do this for them. Maybe I can get a discount:-)
Girl's first colds
We have saline drops to loosen the mucus and the "buger bulb" to suck it out. The girls hate that. I can't blame them. I wouldn't want someone sucking stuff out of my nose. The cold is worse on Abby since she already has a tube taking up half of one nostril.
The biggest result of their colds is that neither is eating very well. With Abby, of course, we can just feed her the rest in her tube. With Natalie, we just have to hope she's eating enough to maintain through this cold and that her intake will increase once she's better.
The other result - Mommy thinks she's caught Abby's cold. I also started getting a sore throat on Friday. I've felt pretty well today, but tomorrow may start the stuffy phase. I really hope not. The thing is I can't figure out where the girls caught this cold. No one has been sick around the girls except for allergy symptoms. Maybe I picked something up at all those doctor's appointments...
A Poo on Pooh
In the words of Pooh,
Oh bother.
Tuesday, October 9, 2007
When plans fail...
Poor little Abby did great for the first three days. She started petering out early this morning. In fact, she completely refused her 9am and 12pm feedings. We left at 3 for the doctor and didn't return until almost 6pm. So, she didn't eat anything for nearly 12 hours. She's also having a pooping problem. The girls that used to poop everywhere each time you changed them are now constipated - and somewhat grumpy. At least Abby is. She hasn't had a decent poop since 12am Sunday morning. I think she's been very uncomfortable and that's why she's not eating. I wouldn't want to eat either if my insides were all full.
So, as soon as we got home, I put her feeding tube back in. It was so sad. She sneezed and shook her head. Her poor little eyes watered. I felt awful. But, she needed to eat, so I set up her feed and she went right to sleep. I want to get her strong again and then we will try again.
It is so frustrating when the girls don't eat. It's by far the worst and most emotionally and physically taxing element of having twins. Honestly, if they ate normally, having twins wouldn't be that hard (so far). I think the hardest thing is not having any control over whether or not they eat and how much. That old proverb about the horse and water takes on new meaning. You really can't make them eat. It's a very helpless feeling. At times it seems like Abby will never get it. I try to remember that Natalie has just been home longer and Abby will get it too. Sometimes, though, it's really hard not to get discouraged.
Monday, October 8, 2007
Come and get it!!!
Sunday, October 7, 2007
Here She Comes to Save the Day!!
Her first goal was to get them eating.
Step One: Lose the feeding tube. Natalie has had hers out since her appointment on Tuesday. She has been taking all her feeds orally since then. Natalie, as a big sister should, helped Abigail out by pulling out her tube during a nap. So the tube came out yesterday and has been out since.
Step Two: Choose the right nipple. Kimberly made a trip to Babies R Us and bought $60 worth of bottles and nipples. To that Ben and I both responded with "what!". Hopefully, we'll be taking some of those back. She chose some with shorter nipples with the idea that the longer ones were reaching back to their throats and irritating them or making them gag. It's phenomenal how many different kinds of nipples and bottles there are. Poor breast feed babies only have one choice! Honestly, though, I'd rather the girls just have one choice. Maybe after we get this eating thing down and they are continuing to grow well, we'll try breastfeeding again. However, I digress... back to the nipples.
Step Three: Feed, feed, feed. Now that there are three of us, we can feed both at the same time, which saves a lot of time. Our first attempt was great. They both took their full bottles in about 30 minutes. Since then, we've had varied success trying a variety of nipples and combinations. As always, the first 40ml or so, goes great, then the rest is a struggle.
Current assessment: It's going fairly well. Abby actually seems to be doing better than Natalie overall. She really likes the shorter nipples. We've had a harder time finding the perfect nipple for Natalie.
Prognosis: Looking pretty good. The girls may not be taking all of every feed, but sometimes they are taking more than necessary (especially Natalie). Overall, they are doing quite well. I'm hoping to continue to make progress and go into our appointment on Thursday completely tube-free!
Kimberly also saved us by doing all the 3am and 6 am feeds. Ben slept from 12am to 9am. I slept from 1am to nearly 12pm. Ahhh, pure bliss. Thanks Sister. We sure so love you:-)