Monday, August 31, 2009

Away Game Uniform

O wanted to show off her away game uniform. She says that she won't be starting in the game, because she does not have a helmet that fits and she does not yet have head and neck control.
But when those things get solved, look out Notre Dame! Go Irish!

Sunday, August 30, 2009

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 :-)

Wednesday, August 26, 2009

new measurements

Today, O weighed 11 lbs 13 oz and measured at 24 inches. Of course, the length could have error, but we had been feeling as if she must have grown an inch. The way she looks in her swing or laying on her blankets is a much bigger baby than she used to be!

Daddy looked it up, and she is 10th percentile for weight and 25th percentile for height for a baby of her chronological age. If one factors in that she was a preemie, then she is average height and about 25th percentile for weight.

In the first photo, she is trying to give a smile. In the second photo, notice how she has her legs held up. This shows that she is gaining strength in her tummy. Her back arching is improving. Not completely gone. But we are making progress.

O began social smiles about 3 weeks ago. They have progressed steadily, but as in anything else with Down syndrome, they have progressed slowly.

Tuesday, August 25, 2009

Cool purple bandage

Today, O had her first blood test since she was released from the NICU. She did really well, and Mommy and Daddy got through it just fine, too! We were very nervous though. But with the team effort of two technicians working her arm, Mommy holding her other hand and pacifier in her mouth (O's mouth, not Mommy's mouth) and Daddy massaging O's feet, we made it with minimal tears and crying. Actually, Mommy and Daddy did not cry at all. They were very grown up about it, even though they really did not like this part of parenting one bit.

As you can see in the photo that we took when we got home, that she looks very brave and very tough in her purple bandage.

The blood tests were routine: thyroid, sickle cell anemia and Targeted Nutritional Intervention (TNI). TNI is optional in care for people with Down syndrome, but our doctor believes in using it. Many people who use it for their children say that they notice more alertness and energy in their children. O tends to have low endurance and limited alertness.

It is hard to believe that August is almost gone. O has become increasingly social, has gained strength in her neck, arms and shoulders, but still doesn't have complete head control. She will be 4 months old chronologically the beginning of September. O is beginning to attend to books being read to her, and is also beginning to enjoy songs being sung to her. She is doing some early self soothing in her crib: hands to mouth. And she is beginning to hold and mouth stuffed animals and stuffed veggies. Her favorites are carrot and puppy. We no longer angle the crib mattress, as she can roll around 180 degrees. She has discovered that she at times likes to sleep on her side. Although all babies do these things, it is still a bit of a miracle to watch it all unfold while we are sitting in the front row. Sleep is going well... except when it is not. But we cannot complain most nights. Last night... I saw 2:30 am and a bottle at 3 am.

Thanks to everyone who keeps us in prayer. The only thing that could make us happier is if O had been born to us directly and there were not the complications that adoption places on the family unit. But God watches over those who are of pure intention. God is indeed good and sends His angels to lift us up!

Sunday, August 23, 2009

Baptismal Gown photo shoot

Today is 3 months since O was Baptized. At that point she was only one week home from the NICU and still over a week until we would reach her due date. She was still very floppy and very sensitive to stimulus. We opted for a very very small private Baptism. We had planned on having a big bash, but this would not have been good for O. As Catholic parents with a preterm, low birthweight baby with Down syndrome, we knew that we would feel strengthened in our Faith and turn our worries over to God better after she was Baptized. Baptism was our first meaningful gift to O. We are grateful to our parents for the gift of infant Baptism and raising us in the Catholic tradition. Since O was so floppy and so sensitive at the time of her Baptism, she wore an everyday white nightgown and was swaddled in a white blanket. She also wore the pink cap that kept her warm for all those long days in the hospital. If I remember correctly, she also wore some Winnie the Pooh pink preemie socks. However, Grandma B held, during the service, the Family Tradition Baptismal Gown in which Mommy O, her siblings and her nephews and nieces were all Baptized. We intended to one day take photos of O in this gown. Finally!! Today was the day! The 3 month anniversary of her Baptism. Through the grace of God, we picked the perfect day and the perfect time to get a wonderful remembrance of her Sacrament of Baptism. Our souls soared rejoicing in remembering her Baptism! Everyday we work to raise her in our Catholic Faith. Night prayers are a must! And thanking and praising God for everything an example we always try to give her.

Enjoy this slideshow of our photo shoot...

Saturday, August 22, 2009

Looking for a few chuckles?

Just something funny that a friend sent me...

Proofreading is a dying art, wouldn't you say?

Man Kills Self Before Shooting Wife and Daughter

Something Went Wrong in Jet Crash, Expert Says

Police Begin Campaign to Run Down Jaywalkers

Panda Mating Fails; Veterinarian Takes Over

Miners Refuse to Work after Death

Juvenile Court to Try Shooting Defendant

War Dims Hope for Peace

If Strike Isn't Settled Quickly, It May Last Awhile

Cold Wave Linked to Temperatures

Enfield (London) Couple Slain; Police Suspect Homicide

Red Tape Holds Up New Bridges

Man Struck By Lightning: Faces Battery Charge

New Study of Obesity Looks for Larger Test Group

Astronaut Takes Blame for Gas in Spacecraft

Kids Make Nutritious Snacks

Local High School Dropouts Cut in Half

Hospitals are Sued by 7 Foot Doctors

Typhoon Rips Through Cemetery; Hundreds Dead

Thursday, August 20, 2009

The Magnificat

August 15 was O's first Holy Day of Opportunity,
The Feast of the Assumption of Mary.
She and Mommy celebrated with a reading then a singing of The Magnificat.
O has always loved this song.

My soul magnifies the Lord,
And my spirit rejoices in God my Savior.
For He has regarded the low estate of His handmaiden,
For behold, henceforth all generations shall call me blessed.
For He who is mighty has done great things for me, and holy is His name. And His mercy is on those who fear Him from generation to generation.
He has shown strength with His arm:
He has scattered the proud in the imagination of their hearts.
He has put down the mighty from their thrones,
and exalted those of low degree.
He has filled the hungry with good things;
and the rich He has sent empty away.
He has helped His servant Israel, in remembrance of His mercy;
As He spoke to our fathers, to Abraham and to His posterity forever.

Glory be to the Father and to the Son and to the Holy Spirit.
As it was in the beginning, is now and ever shall be, world without end. Amen

Scripture text: Revised Standard Version - Catholic Edition

(Some of you may remember O's Daddy singing John Michael Talbot's rendition of The Magnificat at many a Mass, especially at the special Medjugorje Masses. Truly lovely!)

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.

Sunday, August 16, 2009

You've Come A Long Way Baby

Looking back at some old pictures, you can really see how far O has come. It is really amazing. Way to go O!!!!

We also wonder why nobody told us she looked like an alien when she was first born :-)

Thursday, August 13, 2009

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!

Sunday, August 9, 2009

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