Saturday, July 31, 2010

Day 76- Additional Information

Just returned home from a visit with Bella so wanted to fill everyone in on where we are since my last post this morning. When I arrived at 8:15 am, Uncle Patrick (our wonderful friend and RT) was lovingly doing her breathing treatment. She was on 100% oxygen and sats were in 50s and 60s at first. In the next couple of hours she went to 40% pressure, 70% oxygen and sats are in the 90's. She is resting well and much appreciative of the assistance breathing. Her color looked great! We have seen her every shade of blue and purple this week so a nice healthy pink is refreshing.

From what I understand (which isn't always alot ;)) we start weaning her down again until they think she is ready to try again. It could be a day or it could be a week. As one of my fellow wise preemie moms reminded me once before, it is a marathon. We hope to go the distance here so we just have to be patient, not get caught up in immediate gratification and trust in God's strength, not our own, as we wait for His healing and direction.

The Dr heard a heart murmur this morning so she has an EKG ordered for today or tomorrow just to follow up. She has had this murmur come and go so will be happy to get that test done and hopefully see what is going on.

Bella is weighing in at 2.5 pounds now!!! She is pretty much a force to be reckoned with and will do things her way and on her time :) Thank you for your continued prayers for Bella and all of the families & babies in NICU.

Much love to all

Day 76

We received a phone call from the Dr this morning about 5:15 am saying that Bella had to go back on the ventilator. They tried everything to keep from having to do it but her little body is worn. This is not surprising to us as she had 8-10 apnea episodes yesterday where she quit breathing. I can't tell you that we aren't a little disappointed but we have seen this week that our situation could be MUCH worse. She is resting peacefully now. We will update soon once we talk to the Dr about a new game plan. We are so proud of her and hopeful that she made it almost a full week without.
Waiting, watching and always praying.....
Much love to you all

Wednesday, July 28, 2010

day 74

Bella is having a good morning. She's still on cpap (off the ventilator) and tolerating it well. She's still receiving close to 100% oxygen most of the time, but we're ok with that for now and hopeful she can be weaned soon. The next step for her would be a nasal canula and she could go home on that device. Still no timeline for her departure however and we did just find out she'll have to be at least 4.5lbs to leave and she's at 2.4 today. She is still desating with her feeds, which we've become used to and she has apnea which causes her to stop breathing unexpectedly. This has happened about once per day since she moved to cpap. She starts breathing again on her own and receives caffeine to treat the problem, which is pretty standard for someone like Bella. We heard her cry last night for the first time! 9 weeks old and she's never cried, because she's had a breathing tube in. It was amazing! She sneezed too...the smallest sneeze you've ever heard. That's about it for the Bella report. Have a great day!

Sunday, July 25, 2010

Day 71!!!

Our little miracle has been off the ventilator for 24 hours now!!! There was some doubt that she would even make it one hour...

Her behavior (ups and downs) is the same as it was on the ventilator. Her blood gases have remained the same... so to say that she is tolerating is an understatement.

Our joy is beyond words...I wept yesterday when she came off the vent. I can't explain the overwhelming sense of relief that I felt. I have been a little sad on occasion since her birth... that there was so much fear when she came that we didn't get the chance to truly celebrate her arrival. God blessed me yesterday with the pure emotions only felt by the joyful birth of your child. Celebarting their arrival into this world and a knowing that you have been given the greatest gift ever... The gift of loving someone so purely and far more than you can ever love is a memory and moment that I will remember forever and I thank God so much for giving us that time.

We will keep you posted!! Thank you all again for the continued prayers and suppport...

Much love to you all

Saturday, July 24, 2010

The day that Bella came off the ventilator...

well....we can't be certain that it is for good HOWEVER she has been off of the vent breathing on her own with the help of a CPAP machine (oxygen) since 1:00 pm!!!! We can't tell you the overwhelming amount of gratitude that we have to the good Lord and this medical staff today...Even if she has to go back on the ventilator, today is a huge achievement- huge!!! She handled the transition beautifully and is hanging tight for now...her little body may not be able to keep going for an extended amount of time but we shall see...we are enjoying for now. God bless and much love to all

Wednesday, July 21, 2010

Day 64

Bella's lungs seem to be reacting well to the steriod treatments. The doctor weaned her pressure down by 1 point again today and her rate is down to 35. This is a vast improvement over where she was 6 days ago, when treatment began. She has 3 days of steroids left and will continue to receive breathing treatments during this time as well. One of the immediate negative effect of the steroids is slowed weight gain, which we're seeing now. The doctor increase her calories to 28/oz which will hopefully help. Still at 2.2lbs today. Overall Miss Bella is doing great!

Monday, July 19, 2010

Day 62!!!

Again so sorry for the delayed posts to keep all of you updated. We haven't been able to sit still long enough to get it done...

Since our last post Bella turned 2 months yesterday! Again an amazing achievement and a true miracle for someone given a 5 percent chance of survival....We praise and thank you Lord!

Prior to starting the steroid treatments she was on a vent rate of 60, oxygen ranged from 70-85 percent and sats remained in the 80s...after steroids and breathing treatments began this past week her vent rate is now 44, oxygen has been as low as 47 percent and sats remain in the 90s...she has had a few episodes where they have had to go up on everything but she is bouncing back much faster. She had a beautiful blood gas this morning so she may go down again on vent settings. We are able to see her breathing more on her own now that the pressures are down, we pray these prove to be effective breaths.

She had a 2nd eye exam, which shows no cause for concern now and will follow up in 2 weeks. This is great news as the eyes are one thing that is greatly affected by long term ventilator use.

She is now 2 pounds, 2 oz!!! Woohoo!

Bella would like to wish her Aunt Yolanda a very happy birthday...she promises to be good this evening so mom and dad can have birthday dinner with you and Uncle Joey...

Waiting, watching and praying...

Much love to you all

Tuesday, July 13, 2010

Baby Girl

In the words of our friend, Will Hoge:

Baby Girl lyrics

May the sunlight find your face
Even when the rain does fall
And get back on your feet again
Every time you slip and fall
Keep your heart wide open
And always taking in
And even when it's broken
Be strong enough to fix it up again
Oh little baby girl
Sweet little baby girl
I wish I could hold your hand in this great big world
Oh little baby girl
And I hope your hands are steady
And never need to make a fist
And I hope that when you're ready
You get one never ending kiss
And I hope that deep inside of you
There's a sweet eternal song
And I hope the words are pretty
And that you'll always sing along
And I hope your friends are many
And your laughter's always loud
To help you when you're lonely
And pick you up when you're down
I hope your eyes shine bright love
And learn to see the light
Take the time to listen
Decide yourself what's wrong or right
Oh little baby girl
Sweet little baby girl
Be strong in this great big world
Oh little baby girl

If you haven't heard this song "Baby Girl", find it and buy it on I Tunes..Will dedicated this to Bella at her benefit and I still can't listen to it all the way thru without crying...Thank you Will, you are an amazing artist and a true inspiration as an individual.

8 Weeks!

Bella has graced us with her beautiful presence for 8 weeks now, every minute is a blessing....

Sorry folks we have been slacking on the updates but have just been watching and waiting on growth and progress with Bella's lung. We have hit 2 pounds officially! But on the down side her lungs are not progressing on their own. We have opted to start some steroids to assist with the process. The possible side effects are pretty scary but we have heard many success stories and well nothing else really matters if she can't breathe...We are praying that it works and she can be weaned off the respirator. She has been on for almost 2 months now and over a prolonged period of time can really do some long term damage...We are hopeful AND prayerful that this will be the answer. So PLEASE keep the prayers coming that we see some results this week and the possible side effects do not apply to her :)

Just a thank you to all of you again for your kindness, still completely filled with the Holy Spirit and moved by the human spirit... We hope to have many new and exciting updates as the week continues.

Much love to you all

Thursday, July 8, 2010

Day 51!!!

Bella is having a beautiful day today!
They were able to finally get an IV started and received another blood transfusion. She only needed a little boost so they were able to keep her feedings regular. I am certain she is thankful for that! We have discovered her favorite things are eatting and pooping. Never thought that I could be so excited by either!

Her sats have been wonderful today. She has been on 50-60 percent oxygen and sats in the high 80s and 90s.

Highlight of my day and I like to think hers as well is I got to give her a sponge bath tonight. She really liked it! She is proving to be much like mom and loved getting her hair brushed.

Also big news of the day is she is weighing in at 1 pound and 11 ounces! Woohoo!!!

She is now resting peacefully, I pray that she remains that way and may God grant her another sunrise. Life is truly beautiful...

Much love to all

"O Lord, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago."
Isaiah 25:1

Wednesday, July 7, 2010

Read this

A cold March wind danced
around the dead of night in
Dallas as the doctor walked
into the small hospital room
of Diana Blessing. She was
still groggy from surgery.
Her husband, David, held her
hand as they braced
themselves for the latest
That afternoon of March 10,
1991, complications had
forced Diana, only 24-weeks
pregnant, to undergo an
emergency Cesarean to
deliver couple's new
daughter, Dana Lu Blessing.
At 12 inches long and
weighing only one pound
nine ounces, they already
knew she was perilously
Still, the doctor's soft words dropped
like bombs.
"I don't think she's going to
make it," he said, as kindly as
he could.
"There's only a 10-percent
chance she will live through
the night, and even then, if by
some slim chance she does
make it, her future could be a
very cruel one"
Numb with disbelief, David
and Diana listened as the
doctor described the
devastating problems Dana
would likely face if she
She would never walk, she
would never talk, she would
probably be blind, and she
would certainly be prone to
other catastrophic conditions
from cerebral palsy to
complete mental retardation,
and on and on.
"No! No!" was all Diana could say.
She and David, with their 5-
year-old son Dustin, had long
dreamed of the day they
would have a daughter to
become a family of four.
Now, within a matter of
hours, that dream was
slipping away
But as those first days
passed, a new agony set in
for David and Diana.
Because Dana's
underdeveloped nervous
system was essentially 'raw',
the lightest kiss or caress
only intensified her
discomfort, so they couldn't
even cradle their tiny baby
girl against their chests to
offer the strength of their
All they could do, as Dana
struggled alone beneath the
ultraviolet light in the tangle of
tubes and wires, was to pray
that God would stay close to
their precious little girl.
There was never a moment
when Dana suddenly grew
But as the weeks went by,
she did slowly gain an ounce
of weight here and an ounce
of strength there.
At last, when Dana turned
two months old. her parents
were able to hold her in their
arms for the very first time.
And two months later, though
doctors continued to gently
but grimly warn that her
chances of surviving, much
less living any kind of normal
life, were next to zero, Dana
went home from the hospital,
just as her mother had
Five years later, when Dana
was a petite but feisty young
girl with glittering gray eyes
and an unquenchable zest for
She showed no signs
whatsoever of any mental or
physical impairment. Simply,
she was everything a little girl
can be and more. But that
happy ending is far from the
end of her story.
One blistering afternoon in
the summer of 1996 near her
home in Irving, Texas, Dana
was sitting in her mother's lap
in the bleachers of a local ball
park where her brother
Dustin's baseball team was
As always, Dana was
chattering nonstop with her
mother and several other
adults sitting nearby when
she suddenly fell silent.
Hugging her arms across her
chest, little Dana asked, "Do
you smell that?"
Smelling the air and detecting
the approach of a
thunderstorm, Diana replied,
"Yes, it smells like rain."
Dana closed her eyes and
again asked, "Do you smell
Still caught in the moment,
Dana shook her head, patted
her thin shoulders with her
small hands and loudly
"No, it smells like Him.
Tears blurred Diana's eyes
as Dana happily hopped
down to play with the other
Before the rains came, her
daughter's words confirmed
what Diana and all the
members of the extended
Blessing family had known, at
least in their hearts, all along.
During those long days and
nights of her first two months
of her life, when her nerves
were too sensitive for them to
touch her, God was holding
Dana on His chest and it is
His loving scent that she
remembers so well.

Day 50!

So Bella was switched back to the traditional ventilator around 4am. She wasnt doing well on the oscillator, so they decided to make the change. She's now doing great. Right now she's on 58% oxygen and her saturation is in the 90s. Her blood gas looks pretty good too. It seems there is no real science to ventilating Bella. Basically, if it aint broke, dont fix it. The frustrating part is that it seems to break every 10 days or so and we have to fix it. No much else to talk about...She's been eating well and hopefully gaining some weight (I havent heard an update since she was 1.9lbs 2 days ago). Since she's back on the traditional vent, we'll get to hold her this week, if she continues to do well. God bless.

Day 50

Miss Bella is having a MUCH better day today! They changed her to the conventional ventilator around 4 am this morning after a pretty scary episode of desating. She is now on 58 percent oxgen and her sats are in the 90s. Thank you Lord...Her blood gases are coming back about the same as before, which we feared they would be worse on this vent so very happy so far. Who knows what will work for her tomorrow but we are content today and we will take it!
She is still eatting like a champ. She is on 15 cc combined breast milk and formula for extra calories. Nurse Michelle is on her dinner break so I am not sure what she weighed in at tonight but will update tomorrow. Each ounce feels like a huge achievement.
Again thank you all so much for the continued prayers and support. We have never felt so loved or comforted...

Much love to you all

Tuesday, July 6, 2010

Day 49

Good news & bad news today. Good news = Bella does not appear to have any infection. Bad news = she's been desating most of the day. She's been on 100% oxygen for the last few hours and her blood saturation has been pretty low. She's in the low 70's now and has been down as low as 40. She should be mid 80s - mid 90s. We are not sure what is casing this. They've done a chest xray and the breathing tube appears to be placed properly. They changed some ventilator settings about 30 minutes ago, so we're praying that will help. More to come soon....

7 weeks - Day 49

Miss Bella was 7 weeks old at 7 pm! I am at the hospital tonight with her to celebrate however she is taking me on an NICU roller coaster ride instead. After her last feeding and assessment they have not been able to get her sats out of the 60s and 70s, that has been over 2 hours ago. She is on 100 percent oxygen. Her blood gas is good though, but the Dr went up on her vent settings but haven't seen any change yet. He says they will try the other ventilator if she doesn't progress.

The infection in her tube is not going to be treated. They say that it has colonized and hoepfully it will not make her sick. Her blood work does not show signs of the infection spreading so we pray that it stays that way.

This little girl likes to keep us on our toes...tonight is a reminder of a long road ahead and also that we would not make it a day without prayer and constant communication with God. Once again we are going to turn it over to him and keep on praying..

Much love to all

Monday, July 5, 2010

Day 48

Bella has an infection in her breathing tube. Its possible that just the tube is infected and not her. We'll know tomorrow and I'l update the blog. Otherwise, she's doing great. She's been gaining weight and is now coming ina t a whopping 1 pound 9 ounces. She looks huge to us. She's getting 26 calories per feeding now. Regualar babies need 20 calories, but preemies need more. The hard part is figuring out just how much more. She needs to gain weight, but good weight, not just fat , which could make it even harder for her to breathe. So the doctors will watch her closely and continue to adjust her feedings to make sure she's growing. Her growth is the only thing that can develop and heal her lungs, which are still her biggest challenge. Not much else to report. She had an eye exam this week. Everything looks good so far and the doctor will check here again in 2 weeks. Pretty much it - we'll pray this infection doesn't spread to her. Good night.

Friday, July 2, 2010

45 Days

Bella has come so far. The doctor says the most important thing now is weight gain. For several days they've been making adjustments to her feedings to determine the right number of calories for her. We have several sources of nutrients to work with...breast milk (that T has been working so hard to make!), 30 calorie formula, 24, calorie formula, and vitamin and nutrient supplements. They will watch her weight daily and adjust her food until she starts making good daily weight gains. Obviously her lungs are still very sick too. She has not been handling touch very well this week. Her sats have been dropping significantly during hands on care and not rebounding for several hours. This is likely a sign that her lungs are extremely sensative. Overall, Bella is doing very well. We are so thankful for the daily blessings we receive.