Set back day

We were spoiled by so many good days in a row.  Today was a tough one! After days of nurses who were 10's, we had a nurse who was.... not a 10.  Her young intern was a 10 though!

O was not very interested in bottle feeding today. She was more interested in sleeping!  She would eat a very little, then would get tired and not want to work so hard any more.  The doctor said that this is typical pre term baby behavior, but that it may need more help to be overcome because of the Down Syndrome low muscle tone.  Tomorrow an occupational therapist (OT) will work with the three of us.  

She will not be going home until she is feeding by bottle completely.  So, O is already teaching us to slow down in our expectations and just enjoy each day.  And she is SO VERY enjoyable!!!!  We cannot believe what a neat kid she is!  She is worth everything!!!!!
O had her follow up echo cardio gram today.  We should hear the results tomorrow. The first one was good, so we are hopeful.  She did not care for the test, but as usual she was a really brave girl.  I tell you! She is the coolest kid! Yes, we are probably incredibly biased!!! :-)
Here is our little angel sleeping instead of eating.  

Tomorrow  will be a better day!

But everyday it is really wonderful to be with Baby O.

When she opens her eyes and looks at us it is The Best!

Mothers' Day

Free Free Free at last!!!!

Today O got rid of all of her medical equipment except the feeding tube.  She got to put a nightgown on over her t-shirt, and she can be swaddled in one blanket and not need any more blankets.  She is out of the incubator and in the isolette. She is regulating her temperature just beautifully!  It was amazing how all of the sudden her temperature regulation kicked into gear! 

O still will need to spend most of her time swaddled since she was a pre term baby.  They want the babies to have to kick hard against the swaddle as if they were scrunched in the womb. This strengthens their muscles.   O is floppy.  They tell us that most of what we see is probably the Down Syndrome low muscle tone floppiness.  She will need to be swaddled for the first 4 to 6 weeks after she gets home.
Look who woke up today!!! O slept all day yesterday.  It was great to see her eyes for a little while this morning.  She seemed to wake up and look Mama O in the eyes and say, "Happy Mama's Day, Mommy!  I am glad I got here for the big day!"  We were so excited by all the progress that O made today. The biggest milestone was moving to the step down unit of the NICU.  She is classified as feed and grow.  That means that once she is feeding completely on her own by bottle with no feeding tube and still growing that she can go HOME!!!   (the driving back and forth 1 1/4 hours each way is getting to be a bit much!)   O is doing good with the bottles, but she needs to be able to eat all the ounces they want her to before she can go home.  

O now weighs 4 lbs 5 oz  (our weight yesterday was inaccurate)

The doctor said that she may be ready to go home as early as Wednesday!  Please pray that we can go home soon!  We are all ready to be home together!  Doctor also said that O is very healthy for a baby with Down Syndrome.  Music to our ears!  She will have another echo-cardiogram done to make sure that her heart is truly doing well. Doctors tell us they hear no murmur and believe that her heart is good!  Praise God!

We had been praying for the birthmom, as I know many of you have too.  It has been rough emotionally.  In addition to the adoption plan, she had a C-section (emergency) and it was rugged.  She also was worried about O in NICU.  Today, the birthmom called Mama O to wish me a Happy Mothers' Day!! Wow!!! Hearing her say that gave me permission to be truly Happy about my first Mothers' Day.  I told her that entrusting O to us made us happier than we could ever express. She was so happy to hear this.  We have a great birthmom. She has a sweetness about her that is so dear.  We think that O has her eyes.  

O is a great kid!  She is so cool!  We are so blessed!!!  

We began praying with O the first day we met. She really likes the Our Father.  She will flutter her eyes when we pray.  She cannot wait to be Baptized!!!  She thinks that is going to be awesome! We have told her all about St Mary's and she is so excited to join! She cannot wait to hear Father Dave tell all the stories about Jesus!  (and hear Deacon Roger sing!)

2 days old photos

O had a good day! 

This afternoon the oxygen came off! Hooray!!!!

The doctor says that her heart looks great and that she doesn't need another cardiologist appointment until she is one year old!  Praise God!  So many prayers were answered!

She took some formula through her feeding tube. It seemed to go well.

She is peeing and pooping!    Mama O changed diapers and also took her temperature (under her arm).  The wonderful nurses are training us.  It was a bit tricky to change her diaper through the two holes in the incubator. But all went well.

All is going smoothly for the adoption.

Doctor says she might be in the hospital for 2 to 3 weeks. We are praying for the shortest amount of time.  

Baby O is the best!

The Power of Prayer!

Yesterday we went with C to the "special hospital" to meet with the "special pediatric cardiologists".   The ultrasound was done by a cardiologist (Dr. P) this time, and then reviewed by another cardiologist (Dr. F).   The findings were hopeful and good news!  Although both doctors did not want to discredit what the cardiologist (Dr. D) had said at the "regular hospital", the doctor said that if the other doctor (Dr. D) had not seen anything that she certainly would not have seen anything at all.  What she (Dr. F) did see was an extremely tiny hole (VSD). She thinks that that there was a bigger hole 3 weeks ago, but that further tissue development has been closing up the hole.  She said that possibly the hole will be completely gone by the time Baby O is born!  So we keep praying!  There is power in prayer!  After O is born, they will do another echocardiogram to check out her heart.  An echocardiogram sometime after birth is standard with a diagnosis of Down Syndrome anyway.

C was very patient and brave during the ultrasound.   The baby was very active during the ultrasound and not very cooperative.  Dr. P commented that Baby O is active, but active is good! However for C, active is painful and uncomfortable.  C tells us that O is most active in the early hours of the morning, so we should be forewarned!  C seems ready to let O move in with us so that she can get some sleep!  As much as we want her here with us, we would rather wait until the end of May and let Baby O develop fully prior to her arrival.

Cardiologist on Friday

C called today. On Friday, we will be going with C (and O!) and her social worker to a "special hospital" not too far from here to see the "very special pediatric cardiologists" to let them do a fetal echocardiogram and give their opinion on our little sweetheart's sweet heart.  As of an ultrasound done a few weeks ago at the "regular  hospital", we think that Baby O has a cardiac defect called a VSD  (ventricular septal defect).  These can be minor problems or more major problems. Currently the thought is that O's VSD in of the peri-membranous variety which usually needs surgery in the first year of life.  Cardiac defects are very common in babies with Down Syndrome. The cardiologist who read the first fetal echo gave us an 80% chance that she has the VSD.  That of course means that there is a 20% chance she doesn't have it!  We keep praying!

C told us that the pain is better, since the doctor told her to push on the painful area and get Baby O to move to a more comfortable position.  It worked!