Pediatrician Appointment

Both girls visited their pediatrician today, who we really love. It had been a while since they'd seen him, first off because the girls have been so healthy, and also because we had to reschedule our previous appointment, and he is always very booked for well check visits. They were each weighed & measured, looked over very closesly, and Dr. F. always asks a TON of questions. And of course to top off the fun of the whole situation they had their immunizations, 3 each. Madelyn always does pretty well, she cries for a minute or 2, then she's over it. She's so tough. Then there's Katelyn who thinks the world is coming to an end. She screams for a LOOONG time. So we always have her go last so that way I can give her extra loves, and cuddles to calm her down. So here are the stats on the babies:

Katelyn: 13 lbs 4 oz. !!! 24" tall Head 17"
Dr. F. said he would've like to see her with more "catch up" weight. But he thinks over all she is growing pretty well. They are not even on the growth scale for their actual age, so if we go by adjusted age of 5.5 months she'd probably be on the lower side. We got the go ahead to start veggies whenever I feel like.

He checked out Katy's development by asking me lots of questions on how & what she's doing, ie; is she rolling over both ways?, does she sit with minimal support?, does she grab things? does she coo, giggle, smile socially?,...and then he watched her movements, and had her do some things like, grab, grasp, put toy in her mouth, switch toy from one hand to the other, sit with minimal support...ect....He then said she's doing fabulously for her adjusted age, and told me she's around 6 months developmentally! That's pretty awesome. She's right on target for her adjusted age, and catching up to her actual age!!!

Madelyn: 12 lbs even, 23" tall, Head 16 1/4"
So as you all are probably aware by now, Madelyn has been showing signs of having some delays. She's definately smaller than her sis, and Dr. F. said she hasn't lost weight but her weight was very paralell on the scale. He'd definately like to see her gain a lot more weight. He also checked her development by asking the same questions, and watching her do things. It was very clear to him just by observing her that she is delayed. He noted that her movements, and developments are around the 3-4 month range in his opinion. He also told me that because she seems to prefer using her right hand over her left, it most likely indicates that her left side is weaker. She also only rolls to the right side and can only roll from back to belly, & she cannot sit well with minimal support. He diagnosed her as Developmentally Delayed, which can mean many things. We will hopefully have more answers when we go to the CDRC clinic this Friday for their Nuerological exams. Dr. F. said the specialists there will be better able to pinpoint her issues, and make a more clear diagnosis, if any. They will also be able to help us set up therapies for her if they believe she needs them. We pretty much were already aware of Mady's delays, but having a Dr. tell you that your baby is delayed is just hard to hear. I know it's not like hearing your baby is sick or anything like that, but we just want her to be able to do all the things her sissy can do, without having to work so hard. I will definately give more details when I get them.

Mady pictures

For some reason I couldn't get these pictures loaded in the post below about how they girls are doing. Finally after many tries here some pictures of sweet Mady May. No, May is not her middle name it's actually Grace. But I call her Mady May McMabel, or Mady May for short.Mady's first time in the excersaucer. She's still a bit small for it and was pretty wobbley, but she enjoyed it for about 5 minutes.

What a cutie pie! She was smiling at her toys hanging above. She really has such a sweet personality, and is quick to smile at anything she finds amusing.

NEWS FLASH!!!! JACOB IS A 2 WHEELER NOW

Jacob was reluctant to ride his little bike, he wanted to jump on his big bike, which is still a bit to big for him. Once he figured out that he can really practice on this bike to get the hang of things, he really enjoyed it more. He's really confident on it & isn't in a huge hurry to ride the bigger bike any more.

Jacob is so proud to be riding on 2 wheels now! He just decided last week that he wanted to try to ride his bike without his training wheels. This all came about after he visited his friends Michael & Juan who are also 2 wheelers. So he told us "If I don't start riding without training wheels, I'm just gonna be stuck with a bunch of babies" Ian took off his training wheels, and helped him practice and get his balance, and VIOLA! He learned in an hour. He practiced his skills for the next 2 days, and now can ride like a pro! He's even doing little jumps & skidding when he stops. You are so awesome little dude!

8 months old ... 5 months adjusted

K: First time in the excersaucer. She had a good time reaching for the toys. She can sit in it pretty happily for about 10-15 minutes.
K: This is the reaction we get every time we try the rice cereal. She just spits it out all over, and screams like I'm torturing her. I am hoping to get the go ahead to start veggies, hopefully we'll get a better reaction!
K: Look at that concentration. She definately knows what she wants.

So the babies turned 8 months old on the 18th. This is a bit late, but I thought I'd write a bit about what and how they are doing right now.

Katelyn is growing so fast now. It seems like both babies were just going to stay itty bitty forever, but Katy is now probably 12 lbs 10 oz by now. And is outgrowing her 0-3 month clothing. The weight is a bit of a guess, since they won't be weighed until next monday. She eats about 4.5 - 5 oz. of enfacare formula. 4 bottles a day and one at night. She is usually the first to wake up at night for food at around 3:00 am sometimes a bit earlier. She is going through the phase of knowing when I leave the room, and protesting being put down. She likes to be cuddled and patted & rocked to sleep. She is actually very picky about this, and will fuss until you do it right. Katy takes 3 naps a day, morning, afternoon, early evening. She is becoming very active and loves to play on her tummy now. She is very good at holding herself up with her arms for long periods, and is learning to pivot & roll consistantly. She kicks her feet with good accuracy, and often kicks her sis in the head. She loves playing with rattles and is getting very good at putting them in her mouth to chew on them. Katy has been cooing more and more, so far she can make a very good AAAAHHHH sound, and her newest trick; she can click her tounge on the roof of her mouth. We've heard her laugh once so far, at her brother. I know she wants to laugh more, but just can't get the sound out. She's pretty much a happy baby, except when she's tired or hungry.

Madelyn is growing too, just a bit slower. She is about 10.5 lbs and is still fitting very comfortably in her 0-3 month clothing. She is still learning to keep her head up while on her tummy, she can do it well but gets tired out pretty quickly. Mady is still showing signs of having some motor skill problems, but can really do a lot. She is a very happy baby, and all you have to do is look at her to get smiles. She takes usually 5 oz of enfacare formula mixed with either rice cereal or thick it, as she still needs thickened bottles because of aspirations. She eats about 4 bottles per day and 1 at night. She always eats either right before or right after Katelyn's night feeding so that I can get more sleep. Madelyn's voice is still pretty non exisistant. She can make noise but because of her paralyzed vocal cord it is more squeeking and grunting. Which is very cute. She is actually very vocal for not having much of a voice. Mady usually takes 3 naps a day, but sleeps for shorter amount of time. She loves to look at everything, and especially loves watching her brothers play. She is starting to hold on to toys, but is still trying to get the hang of it. She really loves spending time on her activity mat, and practices her rolling from back to belly, which she is getting much better at. Madelyn isn't really picky about where or how she falls asleep, she usually just dozes wherever she's at when she's tired. She is a very content baby, and often gets less attention because of it. Her reflux seems to be pretty under control at the moment with her being on Zantac. But she still has problems with aspirations while eating (inhaling liquid into the lungs). She will be seing the OT/ST (occutpational/Speach therapist) on our next visit to OHSU on Aug. 4th. My biggest fear is that they'll want to put in a G-tube again, but I am pretty certain they won't. All in all she's doing well and is a very happy sweet baby.

From the top part 2: Monochorionic Monoamniotic diagnosis

JUNE 2005

Ian took the time off work to drive me 75 miles to OHSU in Portland for my first Peri appt. on June 14th. Little did I know then, we'd be making that drive countless times. OHSU is like a Mecca. It is a teaching hospital, so it is absolutely HUGE! They specialize in many things, and have our state's best Children's hospital; Doernbecher's. That is where my new Dr. was located.

Our first appointment was extremely long. We had our ultrasound with a very good and experienced technician. She took her time looking, checking over and over for even a slight hint of a membrane. It was obvious that there was none. At that point I was just 11 weeks along, so the babies weren't very big. But you could already see so much. After about 45 minutes of the technician looking and taking pictures of the images, she then left the room to get the Radiologist. When the radiologist came in, the whole mood of the room changed. It was more sobering. She then explained that she'd like to take a look at the babies herself. After checking for a while, she then started to explain her findings. She was certain that our pregnancy was infact a mono-mono twin gestation. She also thought at one point that the twins may have been conjoined. She had to probe them several times with the ultrasound wand to make them move apart from eachother... (apparently they liked to cuddle). When she gave us her diagnosis she asked us if we knew what monochorionic-monoamniotic meant. Of course we did from having already having a tentative diagnosis, and the research that I did on the internet. We were definitely fully aware.

Two hours from the start of the ultrasound we finally met with the Peri. Dr. Tolosa. He was a very nice man. He told us in laymans terms what we were in for. He gave us a lot of statistics, percentages of success, and again told us how extremely rare and high risk this pregnancy was. He also explained how rough it was going to be to manage. He said if I could make it to 24 weeks I should be hospitalized for constant monitoring. Delivery would happen by 32 weeks gestation, which is as far as mono-mono twins can safely be carried. There were so many risks of fetal death of one or both babies, especially as they grew. The bigger they got the more the likelihood of a "cord accident" resulting in losing one or both. The cord placement in the placenta was crucial, and was monitored closesly. In mono-mono twins the cords are often implanted in a very weak area. And with the babies sharing one small planenta there may be complications with the twins being malnourished in the womb.

At the end of the initial consultation, Dr. Tolosa mentioned that we could choose to terminate the pregnancy since the risks were so high. Ian & I knew that was not an option for us. We believed that these babies were given to us for a reason. Whatever the outcome they were ours.

The pregnancy from that point was managed by my O.B. here and the team of specialists @ OHSU. We were seen every 2 weeks by one or the other. Going up north once a month for the first 20 weeks, and being seen by Dr. Hovey once a month as well. Every appointment entailed a very long detailed ultrasound checking the babies' growth & development but mostly checking their cords for tangles, and knots. The ultrasound machines could detect the blood & oxygen flow through the cord. I learned so much I probably could have used one of those machines myself. We were able to find out the sex of the babies at around 16 weeks. I was a little bit hesitant at first to find out, because in a way I didn't want to get attatched to them out of fear. We were thrilled when during the scan the tech said it's GIRLS!! My dream of having a little girl was coming true times 2. Fortunately things went pretty smoothly until about 20 weeks. That's when all the action started.

So Touched

I have lots of posts in the works but for right now I just really feel like I have to share this: http://www.youtube.com/watch?v=WjPrL3n63yg It touched me deeply, and made me realize that even "if" Mady does end up with CP, she will be able to accomplish so much. And having her sissy help carry her along the way. Just so moving, and set to one of my favorite Christian songs. Warning: Don't watch if you're not in the mood for a good cry!

Katy & Mady 2 days old

Looking at these pictures makes me want to cry. It also reminds me of how far we've come. The girls look so tiny and frail next to my grandpa's hand. Weighing barely 2 lbs each, they certainly had a fight ahead of them. They are our miracle babies indeed. Still showing us what they are made of every day. Still fighting, still struggling, but growing & thriving as well. In their short lives they've endured more than some people go through in a lifetime as far as fighting for you life goes...
RDS, PDA, INFECTIONS, 6 BLOOD TRANSFUSIONS, BLOOD GASES, JAUNDICE, I.V.'S IN EVERY PART OF THEIR TINY BODIES, PDA LIGATION, VENT, CPAP, VENT, CPAP, A's & B's, NEC, BEING SEPERATED FROM EACHOTHER FOR SO LONG, BEING AWAY FROM THEIR MAMA & DADDY & BROTHERS, LEARNING TO EAT, GAVAGE FEEDINGS, PUMP FEEDINGS, MEDICATIONS, VOCAL CORD PARALYSIS, REFLUX, LOTS OF TESTING FOR EVERYTHING UNDER THE SUN, MORE TESTING, PUSHING THEM TO THEIR LIMITS, AND MUCH MUCH MORE!!! We are truly blessed with these girls. True miracles, gifts from God. I love you my sweets, and thank the Lord for you every day.

From the top: part 1

This experience I/We've had is the hardest thing I've EVER had to go through. And as difficult as it's been, it's a journey that I don't want to forget. So here's the first of several posts to to tell the story of this crazy roller coaster ride we've been on for the past year.

MAY 2005
Looking back I still can not believe it when I saw those 2 lines on the pregnancy test. I was extremely shocked. I of course called my friend Danielle right after I took the test in complete disbelief. She seemed excited, I however was mortified. Things were going so well for us. I had this great job that I loved, our family was a nice even number. How would another baby fit in? I was a bit afraid to see what Ian's reaction was going to be, sure that he'd feel the same as me. But to my suprise he was CALM. Much more so than me. He just said well it's another baby to love. After a week or so my feelings started settling down. I told Susanne at the store that I'm pregnant, but would not be leaving my job. I'd just need a short maternity leave. And I'd be back to manage the store. Things would work out.

A short time after the positive test, I started having some cramping. I called my Dr. to have it checked out. She sent me to the hopital imaging ceter, where they did an ultrasound. The following day my Doctor's office called. They totally should've asked if I was sitting down before they told me it's TWINS!!! I seriously almost fell over. The Doctor wanted to see me back a.s.a.p. to discuss it further. The nurse went on to tell me the twins are in one sac and they are going to be identical. WOW!!! Of course at this point I didn't have a clue as to what that really meant. So I went on in a clueless bliss for a few days, until my next O.B appointment.

Ian was in complete denial when I told him later that day. He didn't believe me, and totally thought I was joking. When he realized I wasn't joking, I think he seriously wanted to RUN. Just joking, well kind of. By the way I did tell him to sit down before I told him. Smart huh?

The next few days were spent telling a few of our close friends and family. We told my grandma right away who predicted that I was going to have identical twin girls when she first heard the news that we were expecting again. SPOOKY! Everyone was in complete shock, but seemed really excited for us. I'm sure they were all really thinking how in the H-E-DOUBLE-HOCKEY-STICKS are they going to handle that.

At my first O.B. appt. Dr. Hovey went into detail about what this pregnancy was going to be like for me. I was completely stunned when she told me how extremely rare this type of pregnancy is. That is when I first heard the term Monochorionic-MonoAmniotic twins also known as mono-mono or momo twins. In our type of twin pregnancy which only occurs in about 1% of twin gestations, the egg splits late, after the amniotic sac is beginning to form. So our babies were sharing one sac with no dividing membrane, and they were also sharing one placenta. The risks are extremely high, and this pregnancy has a mortality rate of somewhere between 50-60%.

Why so risky you ask? Well without a dividing membrane our babies are free to move about around eachother, tangling together and most dangerously tangling their imbilical cords. The tangles can lead to tight knots which can cut of oxygen/blood flow to one or both babies, which can lead to fetal death. There are many other complications that factor in because of only sharing one placenta which is usually very small for 2 babies.

Dr. Hovey told me she could'nt handle my prenatal care alone, and that I'd have to see a Perinatologist @ OHSU. She also wanted me to go there to have a follow up ultrasound done with a level II machine to rule out any misdiagnosis. We'd have to wait until I was somewhere between 10-16 weeks for a true diagnosis. So the waiting started. I spent the next 4 weeks in complete and utter horror.

Really cute pictures

Madelyn is on the left of these pictures. Look how cute they are holding hands. Katelyn's had enough, our little drama queen.

This picture of Aaron shows off his big baby blues Jacob's getting lots of freckles this summer, I tease him that all the little girls are going to chase him next school year. He's so adorable.

Katelyn found her voice today

Just as we were starting to worry wether Katelyn was ever going to make any other noises other than crying, she started cooing today! She has mimicked an AAAA sound before here or there, but nothing real consistant. But today she just started making some noise, with a real true AAAA sound. Jacob and I were right there listening and cheering her on. She kept it up for a good couple minutes. We are just so delighted in her new found voice. One of the BIG things in preemies born as early as our girls is speach delays. So of course the worry wart in me has been freaking out about when the girls are going to start cooing. I've been working with Katelyn especially for a long time trying to get her to at least imitate some vowel sounds, as the Nuerologist recommended at their last appointment. That was over 3 months ago, and now it's finally paid off!!! You could tell how impressed she was with herself, she of course loved being the center of attention.

Madelyn had a fun today too. She played on the floor on her activity gym, reaching for the toys above. She's also been trying hard to figure out the rolling over thing. She's done it a few times, but always gets hung up on her arm. Mostly she still likes to lay on her back though. As for Katelyn she's mastered the back to tummy roll.

We are really interested to see what the Nuerologist has to say about Mady on their next exam ( which is August 4th). She had a mildly abnormal first exam back in April. The things that have us concerned are mostly that she has very stiff jerky movements that a lot of time seem unvoluntary. Especailly when she is trying to do something or is excited, or overly tired. It is very hard to hold her because she arches her back a lot, she is just always in constant movement. Ian & I always joke that she's just a spaz, but deep down we are concerned. But of course I as most of you know am I HUGE worry wart so hopefully at this next appointment we will have all of our worries put to rest. For now she seems to be doing really well though, other than the spaz factor.