A Plus ! From the Doctor

Olivia is a VERY happy baby!

Olivia had her 8 month well baby visit on Monday. We braved the cold and snow, even when her Early Intervention program was closed due to the snow. Of all the luck! On Olivia's First Snow Day she had to go to the doctor and get a shot!

The doctor was pleased with Olivia's growth and development. Although she has fallen behind typical children, she is on a steady path for Olivia's path of development. He said that as long as every month we can see that she is doing new things then she is doing well. And we have certainly seen much development from her in the past month. Olivia was enjoying "flirting" with the doctor. She would stare at him, get his attention, then flash him one of her most enduring smiles. Olivia is a very smiley baby! Quite the happy, social little girl. She is well aware that if someone says her name and smiles, that the social appropriate response is to smile back. We believe that she is aware that Olivia refers to her, and Mommy refers to Mommy and Daddy refers to Daddy. She also will laugh when she hears others laugh. (whether or not she gets the joke!)

So the stats:

She is in the 50% for typical children.

Weight is 18 lbs 1 0z

Height is 27 inches

Head circumference is 17 inches (in case you are making her a hat!)

All very nice normal numbers for any baby!

Olivia's cheeks look a lot more chubby than the rest of her body. People with Down syndrome have low muscle tone in their face and that gives them the cheeks that any Grandma would want to pinch. :-) She may always have the curse of having adorably chubby cheeks! :-)

No more mohawk comb over!

Olivia got her first haircut today! Aunt Connie did a wonderful job and Olivia was very calm and did not even seem to realize what was happening. The top of her hair was long in the middle and it would flop to one side in an odd way. She also had one lone curl on the side. Now her hair is more even, and looks great! It still has length and curl on top.

So, Olivia had her first haircut at 6 months and 18 days old. That is written in her baby book. Yes, we did save her hair!

Happy Halloween!

We dressed Olivia as a bunny for Halloween and went outside for a Fall Photo Session. Daddy was photographer.

Note from Olivia: Daddy and Mommy got the idea to dress me up as a bunny, because my pediatric endocrinologist had an "Anne Geddes baby in bunny costume" photo in his office. So not only do I have to take medicine everyday, but I had to get all dressed up in a bunny costume due to our trip to see the doctor at Devos. But I am a good sport! I did not mind the costume too much! I did not smile! But I did not cry or complain either. Sometimes babies just have to humor parents!

Mommy and Olivia had so much fun!

Looking at Mommy:

Olivia and her first pumpkin:

Inside getting dressed:

Are you sure this is such a great idea?

Oh dear me!

Happy Halloween!

These are some photos to compare!

Just thought I would offer some points of comparison. Photos taken while in the NICU to photos taken the other day! My how far we have come!

Olivia was born weighing 4 lbs 3 oz

Today she weighed in at 14 lbs 13.5 oz

She was 17 1/4 inches at birth

Now she is about 24 inches

Evaluation updates

Over the course of the past 6 days, Olivia has had numerous evaluations: Pediatrician, Physical Therapist (PT), Occupational Therapist (OT), Speech Therapist (ST), Infant Toddler Teacher, and then finally today the Child Psychologist doing the Bayley Developmental Assessment. Yes! We have been busy!

Olivia is on track in all areas for a typical 3 to 5 month old, except for her head and neck control. The head and neck control is being delayed by weak muscles in the front of her neck and chest. We keep working on the exercises and continue to have patience. It will come, it just comes more slowly than with typical children. But we are thrilled that in all other areas she is on track! The Cognitive Evaluation was also very positive! She has such good use of her hands, and eye hand coordination, in addition to concentration that it was easy for the Psychologist to assess her cognitive development. (at least that is what she told us) Although we have been told that at some point kids with Ds fall behind their peers, we are not seeing it yet. As someone with a background in Montessori Education, I will just keep believing in her potential and trying to provide her the best environment in which to develop to her fullest potential. Olivia is exciting to work with and watch. The toy she is playing with in the photo is her current favorite toy. She plays with both hands, brings it to her mouth, studies it, drops it and picks it back up again and throws it :-) .

Today we watched as she purposefully rolled from her back to her stomach. She had been having difficulty with this move, as her head simply did not want to go the rest of the way over. When she has been laying on the floor and practicing, Daddy and Mommy have sat by quietly in the background with silent cheers so as not to disturb her concentration. It was so awesome when today as we watched she actually did it! We quietly high fived it! And watched her as she enjoyed her tummy lying position that she had achieved all by herself! Reminds me of my niece who is famous for saying, "I do it myself!" We think Olivia will be an "I do it myself child" also!

The blood test to check her hypothyroidism is next week. We will be surprised if it is in the therapeutic range. Some days I feel that it is and other days I question it.

"Labor Day" video

O is learning to play in a supported sitting position. She was originally not too keen on the idea as playing in lying down positions seems sufficient to her. She needed some motivations to actually sit and not straighten up. Balls, tops and as you can see, Uncle Dick are all pretty good motivators!

Medicine going well

Giving the medicine is going well. This special medicine bottle makes it very easy.

We think O is already perkier. All in all, we are pleased thus far with how treatment for her hypothyroidism is going.

Why O is so tired...

(By the way... the cute onesie... by Under the Nile Organics... is from Uncle Jon and Aunt Chris....Thanks... O wears it all the time!!!)

We now know what is making O have such low endurance. Yesterday, the blood test results came back showing that it appears as if she has hypothyroidism, which tends to be very common in people with Down syndrome. Although for typical people, hypothyroidism tends to strike in middle age or older, in people with Ds, it is not uncommon for them to acquire it as babies or children. O's TSH was normal in the hospital. Her newborn screening was off, but the recheck before she was released was just fine. We had been noticing some symptoms (cold hands and feet and tiredness) and so had the doctor check her thyroid numbers early. Usually they check it once a year. We will be taking O to see an endocrinologist as soon as they can get us in. Hopefully it is really soon! We will surely try to get the earliest appointment available.

Here is what Peter found last night on the internet when he was doing some research on infant hypothyroidism:

This sounds an awful lot like O:

1. "Infants with hypothyroidism may appear sleepy all of the time and have trouble taking the breast or bottle. They may be constipated or have gas as well as poor growth patterns. At birth, they may experience jaundice longer than other infants. Also, they may be quieter than other babies and seldom cry. In addition to a general disinterest in their environment, these babies may feel floppy when picked up and have poor circulation."

Sounds like the med will be in pill form which can either be given to them or crushed and administered in a dropper. Our experience with our cats may come in handy :-)

15 week measurements

At 15 weeks since O was born, she weighs 11 lbs 8 oz and is 23 inches long.

She does seem tall to us. We will have to check the charts and see where her percentages fall. She had been tall for a baby with Down syndrome and about average in weight for a baby with Ds.

What is funnier than a right-side up pig?

An upside down pig, of course!

Yesterday, Mommy set up O's play things and Mommy did not know that she had set up the pig upside down. O was laughing and smiling and just having a grand old time. Mommy had no idea what was so funny. Then she saw! The humor! An upside down pig!

Well, today Mommy is finding out that the little girl with the orange flower in her hair is just as hilarious, and she is right side up. :-)

O is such a happy, smiley, chuckling young angel these days! Such a joy! It seems like it could not be possible that this is the same baby who was edging her way to gaining a title of colicky about a month ago. She is not colicky at all now.

Presently, O is sleeping well and long at night and well enough during the day considering her long nights. We are all getting sleep and we are all happy, smiley and laughing! God is good! Always! God was especially good to us during those difficult first months! He never left us and always strengthened us! God is good company all the time! Especially on sleepless nights at 2 in the morning! God is indeed good! Goodness, Mercy, Love! That is God!

Busy Week and Video

O had a busy week. Grandma B was here on Tuesday. Wednesday we had Aunt Suki and Grandma and Grandpa M here for a visit. Aunt Suki and O seemed so happy to finally meet. As they were leaving Aunt Connie arrived, spent the night and was here all day Thursday. Aunt Connie babysat for a few hours so that Daddy and Mommy could have a date... their first time alone together in 3 months! Thank you Aunt Connie! Friday O had a well-baby doctor appointment. She is now officially 11 pounds!!! She is somewhere between 21.5 and 22 inches long. Doctor is pleased with how well O is doing.

O is busy this weekend catching up on her sleep and Mommy and Daddy are trying to catch their breath. It sure was a fun but very busy week. O is getting more and more social everyday. She loves to make eye contact and give little smiles and chuckles. The low tone in her cheeks keeps the smiles as tiny ones, but it is improving. Her social-ness is making going down for naps a bit harder again. But Mommy is managing to coax some long naps out of her. It just takes a bit more effort. O was so tired after her doctor appointment that she took over a 3 hour nap, followed by a 45 minute nap not too much later. She still went to bed early and slept well. She has been taking a 3 am or a 5 am bottle after her 6:30 or 7 pm bedtime bottle. No complaints here! When O is awake she is raring to go! But she tires easily and needs her crib sleep time or else quickly becomes unhappy. And as the saying goes, "if baby is unhappy, everyone is unhappy!"

Here is a new video of O from this week.

You can also get a higher resolution version at http://gallery.mac.com/organickitty#101013

Higher quality video (same movie)

Here is another way to view the movie in higher quality:

Video- End of July-Baby O

So sorry it has been so long since I have posted video of O. (I was having technical difficulties)

As you can see, O has made a lot of progress since the last video. She can hold herself up on her hands better and with more strength. She can hold a rattle. And she holds her head in midline while on her back with the best of them! She is so much bigger than her starting weight of 4 lbs. She now weighs a whopping 10 lbs! Soon she will be bigger than Mommy O!

Enjoy our little movie of Baby O!

From Insomnia to Narcolepsy! :-)

Here is a little update on O's sleeping.

Nights remain pretty decent. She still eats about twice at night and is not the fastest in the world to get to sleep for the night. But she is usually sound asleep by 10-ish. We still try to get the bath early which is about 6pm. Then try to get to the nursery to start soothing by 7pm. We have had some nights when she has been asleep by 7. Some by 8, or 9 and the worst is sometimes 10. Probably not too bad so far.

The days have gotten remarkably better since Mommy's humble phone calls Monday night to the Pediatrician and Aunt Jen who is a Mom, Montessori trained and works for a Montessori Training Center. There were some simple changes made, such as putting O down for naps sooner and with less soothing (only 5 minutes) and then Mommy leaving the room. O has not cried anymore with this new routine. When Mommy was more involved in getting her to sleep at nap time she cried more! Go figure! Mommy is also to work to have O have more independent time during the day with Mommy doing her own thing in the room with O and O having to entertain herself and soothe herself with only minimal intervention by Mommy. This is also going well. The first day O protested this new plan, but by the second day it was going well.

The narcolepsy??? O has been taking really long naps now. As long as 2 and 3 hours and has also been taking more cat naps. Even at inopportune moments when Mommy thought she was ready to eat, but she falls asleep while Mommy gets the bottle! This is the current situation. I am now waiting for her to wake up and hoping it is soon so we don't waste a bottle. The alimentum is expensive!!!!

We are also making some progress on the back arching. In the written report from the Physical therapist we read that she attributes much of this behavior to GERD (gastro esophageal reflux disorder) GERD is common with Down syndrome. Today we further increased the angling of her crib, and are also keeping her upright 2o to 30 minutes after a bottle. This is usually in an infant seat, or sometimes being held. It doesn't seem to matter which I do, she stays asleep when put in her crib.

We have our happy calm sweet baby back! Hallelujah!!!! Praise God!!!

Mommy is doing the St Anne Novena this week... two intentions!!! Gratitude for O and For O to sleep well. Thanks for the intercession St Anne. St Anne is O's name sake as it is part of her middle name.

PT Girl

We think that O is PT girl! Physical Therapy, or Party or Pretty Tired! Which ever PT fits the day! O had a GREAT time at the Family Reunion on Sunday! We so appreciated the warm Baumgartner Family Welcome that O received! We are so blessed to be a part of the family and we are so blessed that you welcome O to be one of us! I think about how PROUD Grandma and Grandpa B and Uncle Bill and Aunt Marge would be of all of their descendants and everyone who has joined the family through marriage, friendship, adoption and foster care. Everyone is family in my estimation and everyone is valued and loved! I think that my years away from the reunions has only solidified my appreciation for each and everyone of you! Thanks for being my family and for filling my life with love, laughter and life!

O survived Sunday just fine! She seemed to really be happy and enjoying herself. O was so interested in seeing everyone! It was so neat to see this! Next year she will be even more in the swing of things. Because of the DS we don't know if she will be crawling or walking yet, but we will keep on working on getting her ready to be as active and involved in next year's reunion as possible! I DO think that someone should design a Family Reunion 2010 shirt! O would love to have a special shirt to wear! So would we! Connie and Dennis do such beautiful work! The printing holds up to washings so very well! It is amazing! And the quality of the t shirts is great! Connie is not charging near what her effort would be worth. Such a kind offer on Connie and Dennis' part! OK I hope I have everyone pumped up to get their creative juices flowing to design a shirt!

Yesterday we went to Daddy O's family's house at the same Lake to see his family! O loves to be outdoors and be around people. Only problem is that she is now overtired! Our little baby who doesn't cry and will always sleep and nap in her crib has other ideas today! At the moment she is peacefully sleeping in her chair next to me and getting rested for her bath. She has slept most of the afternoon and hopefully we will have restored her normal rested state. I guess we play we pay! But it was so wonderful to spend two days with family.

New photos

I just added some new photos to the Best of Baby O on Shutterfly

Here is a preview:

New video

O can now hold her head in midline, when she wants to! This has been a long time coming. Before her head would just flop to the side. This is so wonderful to see! She is also grasping objects. She probably doesn't realize what she is doing, but it is encouraging to see that she has the strength to grasp objects. She is in the very beginnings of social smiling and is making more eye contact. She especially likes to make eye contact when it is night time and she is supposed to be falling asleep. She had been trying to make eye contact with me this evening. Now she is trying it with Dad who is fresh home from Chicago. Time for a welcome shower for Mommy. Enjoy the video!

A Baby!

I have been thinking of all the things I want to tell you as I sit feeding O. Then she is down to sleep and I sleep at night and do housework during the day! Busy Busy! Happy Happy! The house is clean! We are well fed! O is happy! The cats are brushed! The litterboxes are clean! I am up to date on Thank you notes! Life is good!

O has passed out of the "feels like a preemie" stage!!! Now she feels so much like a newborn baby!!! She still is probably more low tone and floppy than a typical newborn, but she is so much stronger! And a determined little lady! She now weighs about 7 lbs 5 oz. (weighed her on the scale from Grandma and Grandpa B the other day. She mostly sleeps at night and eats. She will sometimes go to bed early and sometimes late. We find that sometimes she is ready for a bath at 5 pm, but other days doing it at 7 seems to settle her down for sleep much better. We are following Montessori's advice (and Grandma Kate's wisdom!) and following the child! At this early point in her life every day is different. We just try to keep her rested, active during alert time, well fed and dry diapered! We are using Tushies diapers which are gel free. They are the closest to cloth. They are recommended by our doctor. We hope that the fact that she feels wetness and doesn't like it will help her potty train at an earlier age. We have dear friends raising a sweet little almost 2 year old with Ds who is in cloth. God Bless this amazing mother!!!!!

I am reading Road Map to Holland when ever I can squeeze in a few moments. I am addicted to reading, and so am always trying to sneak in a page or two out of the various books laying around the house! O will grow up in a house with much reading and many books littered around the house! Anyway, this book was written by a woman who had twins. One with Down syndrome. She writes about her experience in the NICU which is so healing to me! I had felt that what I was experiencing was just because I was an adoptive parent. But as I read her wonderful words, I realize that every parent feels this way! I also learned that we were brave to have spent the endless hours there. It was all worth it! By the time we came home with O we really knew her and she knew us!

Life with O is wonderful! Yes! I do understand the full impact of sleep deprivation! God bless all of you who raised multiple babies! Especially my brother and sister in law with 5 in 9 years! Amazing people! God bless you!!!!! O brings joy at every hour of the day! She is such a huge blessing and so amazing! We are so lucky to have been chosen to raise her! I pray that we will be worthy of this great privilege! God bless the birth mom! She called Daddy O to wish him a Happy Father's Day! O has so much of her birth mom in her! Sweetness and strength!

Finally an update

I have to apologize for the delay in posting. O has been keeping us very busy.

She is definitely thriving and getting really strong (sometimes I wonder if she is going to be stronger than me pretty soon! In fact, we were told by the child psychologist that she is right on track for a typical baby her chronological age. Therefore she is doing GREAT for a 4 week early premature baby with Down Syndrome. Daddy O was just at a new families party at Logan Center. (O could not go since she is still grounded from crowds :-( ) He said that the kids with DS who have heart defects are the ones who show the greatest delays. The kids without heart defects do pretty well. O is so blessed as to have a really healthy heart! We know that our little J has had so many health issues and developmental issues due to his heart defects. He is to have surgery. We have indicated a desire to adopt him. Now they just need to see if we are still a match for J since we now have O. (confusing huh!)

O now weighs 7 lbs 1.5 oz. She is about 20 1/2 inches long. She really looks lean and has baby muscle tone. Due to the DS, she has a short neck and so appears heavy in the face and neck. She also has extra skin at the back of the neck. She doesn't wear collars very well. Something to consider when clothes shopping. I have to buy more clothes in the next size up. She will be in them soon. Her torso is really long!!! Her arms and legs are normal, but she has to roll up her sleeves and her pants.

Sleeping. We are still trying to balance out activity and sleep so as to give her enough play therapy time, yet not over tire her. It is tricky. We discovered that sleeping in her infant chair doesn't count for sleep time. It results in a fussy over tired baby. No more of that!!!!! Luckily she likes her crib. But today she did not like the thunderstorm and day time darkness. Who does!

We are blessed! And we are tired! Typical new parents I hear! And we are over protective and over zealous and over conscientious! For those of you who have known us forever you are not too surprised!!

I hear my little angel now! Time for a snack then back to sleep... I think!!! :-)

Rollover Day

Today during tummy time, O rolled over from tummy to back!!!

When she rolled from back to tummy a few weeks ago, she had no clothes on as it was dressing time. This time she was fully clothed, big diaper and all!

I guess the Early On interview yesterday motivated her! From their brief look at her developmentally, O is doing really well, and is accomplishing some 2 month old milestones.

O seems to understand "day time" a bit better, and has been awake much more during the day. She still needs a lot of sleep, and sometimes has a time getting herself to pull away from socializing and go take a nap. Mommy and Daddy have resolve though, and she is staying well rested. It is nice to have her awake more and be able to spend more time with her.
See how strong she is in the neck, arms and chest. She is doing better at getting her arms under herself by herself, and is taking far fewer "nose dives" and is better at rescuing herself when she does. She is also getting better at getting her feet and legs tucked under herself during tummy time. Yesterday, she was very alert and had 3 long tummy times. Today two. She is now taking a bath immediately before bedtime bottle (about 7 or 8 p.m.) Then it is off to dream land and then the night begins. She still feeds about every 3 to 4 hours during the night. But it is strictly business in the nursery and then back to bed. Mommy is a real party pooper at night!

Both sets of Grandparents have been so wonderful to us! Without the various ways that both sets of Grandparents have helped us, we would not be able to be helping O get off to as great of a start as she has now.

Thanks Grandparents!!!!!!
Today my Mom was here helping out: feeding, holding, changing, dusting, mopping!!!!!

Thanks Mom!!!!

Side note: The evaluator from Early On, was very good friends with a prior resident of our house. You may have heard our stories about Lady Isabella from England "Old Money" whose mother paid to have the sunporch added to the house. Lady Isabella is in England now. Olivia's new nickname is Lady Olivia. No more calling her Miss Olivia. She is now taking over as royalty in the house! We needed some class around here!