Day 3 of RSV

We spent another night in PICU b/c there was no room on the peds floor. It's that time of year, everyone seems to be sick!

Although I appreciated the tender care and compassion of the staff in the PICU when Abby needed it, I definitely felt the heaviness and stress of the atmosphere building today. All the beds were full of very sick children. Two babies on the Oscilator vent, which we vividly remember from Abby's early NICU weeks... not something you would want to witness. Accidentally overhearing tense conversations in our neighbor's room, and watching nurses dash in and out of rooms that are beeping.

Lack of sleep along with the above mentioned was making me a very irritable mommy.

Abby had a rough night last night with plenty of coughing, suctioning, fever and agitation. Despite her junky sounding cough she has been holding her O2 sats above 90 all day. Just as I had predicted after a long night of very little sleep, she finally conked out this morning after a very vigorous suctioning which then produced a vomit! yuck

We are now in our new room on peds, which is nice. She looks like she feels miserable and sounds it too. Right now all we can do is treat symptoms and watch her vitals. Her fever is hanging on so we are trying to keep her comfortable.

It looks like we will go home tomorrow as long as nothing changes or surprises us in the middle of the night. I'm sure we will all be more comfortable at home, and I would feel better being the one in control of her meds, her feeding pump, her nose snot etc!! You moms out there can relate.

Today our nurse explained that RSV tends to peak at around 5-7 days... so we are praying that nothing eventful will occur after we are at home! Please continuing to pray that her body will tolerate the high fevers without losing control and going into another prolonged seizure. That is usually what sends us speeding to the ER.

Thanks for all the encouraging emails, phone calls and prayers lifted up for our girl. I'm always amazed during times such as these what a strong little girl she is. What a blessing to us!

RSV

Abby pictured above with Grazer, a dear and trusted friend.

She started getting sick yesterday morning. We immediately recognized the tell tale signs of an illness as soon as we got her out of her crib... she sneezed and showered me with snot. Her temp was 101.1 so we gave her Tylenol and decided to hibernate here at the house like we normally do when the kids are sick.

Early afternoon she started seizing like she occasionally does with a high fever. As the minutes passed it didn't stop, even with the Diastat (emergency med we use at home). Off to the ER we went, helplessly watching Abby struggle to breathe and trying to do everything possible to keep her airway open while in the car.

Once in the ER they took her straight back, despite the waiting room guards' earnest attempt to have me "take a seat, and fill out the registration forms." She was still struggling to breathe and was still seizing. After finally successfully starting an IV she was given 4 more meds to stop the seizure. Meanwhile her breathing was becoming more and more labored. They tried the mask, the nasal trumpet and then resorted to bagging her. Before we could catch our breath she was sedated and intubated (put on a ventilator).

She spent the night in the PICU to be monitored. Thankfully after only 7 hours she was weaned down on her vent settings and was able to be extubated (taken off the vent) last night! She slept so much better after the tube came out, and so did I.

We found out she does have RSV which was probably the reason for her respiratory distress yesterday during the prolonged seizure. She is still running a fever today and has a horrible sounding cough, but despite it all her vitals are stable and she is able to rest.

As of now (Mon. 3 pm) she is still in PICU but we anticipate moving to the peds floor this evening. Our biggest fear now is that she will develop a pneumonia from the RSV phlegm on top of the likely hood of aspiration during her seizure yesterday. We are waiting for the docs to make rounds and give us report on her chest x-ray this morning.

Check back later for more pics and update.

"99 Balloons"

The value of Life. The love of a child. A baby with special needs.

To end this week celebrating the sanctity of Life I wanted to share a precious story that clearly demonstrates God's plan of love and admiration for ALL children.

Baby Eliot was born with a genetic condition called Trisomy 18. His family didn't know how long he would be with them, but they loved him with abandon during his time on earth. How the Lord must long for every child to be cherished like this!

Here is a short excerpt from their blog "99 Balloons":

"So today we propose a new standard.
How do you measure a life? By years? By esteem? By productivity?

Eliot Hartman Mooney
99 days, 98 birthday parties (& today makes 99)
18 nurses
17, 557 visits to his website
0 minutes unattended

Although these statistics are fun. They all fall woefully short of a metric whereby to judge Eliot’s life. We propose that Eliot’s life be measured by impact.

Thus, truly his was a full life."
(Matt Mooney-Nov. 1, 2006)

In discovering this story my heart was touched by the faith of a family and their trust in the Lord amidst uncertainty, pain, pure joy and ultimately death.

For only in Christ are we able to lift up our hands and submit our lives to His loving plan.

Video warning: Kleenex required!

ELIOT'S STORY

Thank you Matt and Ginny for letting me share your story. May the Lord bless you richly in the days to come!



99 Balloons

Sanctity of Life Week

This week marks the 35th anniversary of a very dark day in our nations' history. The day that abortion legally started taking the lives of children in our country. Today, January 22nd, approximately 50 million babies have been killed by abortion. These children would have been American citizens. They might have grown to be leaders, doctors, teachers, mommies and daddies... if only they had been given the chance to LIVE.

I have recently become familiar with the music of a Christian artist (Ginger Millermon) who is a huge pro-Life advocate! Her story touches me on many levels. Because of our experience with Abby and her early arrival we are even more aware of the miracle of life. I am naturally drawn to other stories involving prematurity because I think it touches a fundamental truth about human development... the premature baby IS the unborn baby, separated only by a matter of minutes.

I don't understand how someone can look at a perfectly formed prematurely born infant and think that somehow through the act of physical birth this child became a "person." Micro-preemies are in fact fetuses, born into the world long before they are ready... but they are very much alive! I know because I had one. Abby only weighed 1 lb 5 oz and she was a tiny little person with a will to live like nothing I have witnessed before.

Today I heard Ginger Millermon share her testimony of the struggles her family experienced when their premature twin boys were born. Like us, their family was also faced with a heavy decision in the face of a very uncertain future. Her testimony is one of Faith in the Lord and a trust that His plans are perfect, and his ways are good... although they are not our ways.

Many of Ginger's songs are inspired by her experience with her premature son and his severe illnesses. In light of Sanctity of Life week I wanted to share a song she and her husband wrote, called First Breath. This song was written for a pregnancy support center and it speaks out on behalf of the unborn child. The lyrics in this song are also true for women who choose to place their babies for adoption... giving their children a chance at Life.

If you have a moment, please listen to Ginger's testimony here: http://www.gingermillermon.com/

Just click on the link resources, and then American Family Radio interview
I hope you will be blessed as I was!

First Breath

Mommy, give me a chance
To say I love you
To hear you singing a lullaby
Holding me close when I need to cry

Mommy, give me a chance
To hear your laughter
Watching me as I giggle and coo
Taking my first steps to daddy or you
There’s so many things that I want to do
Give me my first breath

Chorus:

For I am fearfully and wonderfully made
Fashioned by God’s hand
And my days were written in His book
Long before time began
And He’s making me perfectly in His sight
There’s no one else like me
So give me the chance to see the light
To find out who I might be
Oh, you never know who I might be
Give me my first breath

Mommy, give me a chance
To make you smile
To run in the rain on a warm spring day
To bring you flowers on the first day of May

Mommy, give me a chance
To see the sunset
And watch the fireflies dance in the night
Wondering how God gave them their light
Holding your hand and squeezing it tight
Give me my first breath

Copyright Ginger Millermon 2002

© 2002 Anothen Music All Rights Reserved.

Our Christmas in pictures

Merry Christmas

Make an on-line slide show at www.OneTrueMedia.com

Dear Wonderful Family and Friends,

As the year comes to a close we reflect back on the days of 2007. It’s been quite an adventure for our family! Ten major events mark the memories we’ve made.

Our little blond munchkin turned one in March! What a special celebration. Josiah has brought so much surprise and pure delight to our home. We truly praise the Lord every day for allowing us to experience this child’s life. Kissing his soft cheeks and receiving one in return can only bring big, happy tears and a bursting heart! He has mastered over 70 signs which helps him to express his wants and needs. Along with these signs he is now speaking pretty clearly, which is lots of fun!

In March we also took a trip to Pittsburgh for a second evaluation with the country’s most recognized cortical vision impairment specialist. Her advice, encouragement and professional recommendations have helped us get several things that Abby needed. The most exciting one is that Abby now has a one-on-one aide in the classroom! The intention of having the aide is to provide someone who will bring language to Abby, as well as a consistent learning experience. The Deafblind Intervener model is very new to the school system, so we are working together with them to create the most appropriate environment possible! We are praying for continued sign language comprehension and expression for Abby. She is consistently and appropriately signing “up,” “eat,” “more” and “all done.” We are told her classmates enjoy her presence and miss her when she is absent.

In April my mom and I took the kids to Montreal Canada to embark on a new journey. While in Montreal we learned a new manual therapy technique to use on Abby. Because of Abby’s CP she is unable to sit up, crawl or walk. This therapy will hopefully allow her to develop a stronger core structure so she can eventually gain more function. It demands a large time commitment every day, but we are already seeing physical results after only 8 months. It’s taken some effort to rearrange our family routine to fit it in. Abby seems to enjoy it and becomes very relaxed… most of the time.

Patrick is really enjoying his new job at NASA! Another one of this year’s praises. The Lord provided the exact job we had prayed for. He loves the challenge.

Abby has continued to struggle with reflux. To make a long story short, the G-tube feedings became too uncomfortable for her. After undergoing an upper GI exam (including sedation and a scope), and discovering significant esophagitis we knew something needed to change. We resorted to a GJ-tube which feeds a slow drip of special formula into her intestines, bypassing her stomach. It has helped so much. She is slowly gaining back the 4 lbs she lost during the last 2 months.

The beginning of Fall brought a sad day for our family. We lost our golden retriever, Hummer. He was such a big part of our lives. We really miss him, especially now that our Christmas tree is up and he’s not here to explore it.

October took us to California where we enjoyed a great family reunion with my mom’s family!! The airplane trips were an adventure in themselves. It was so wonderful to travel with my sister, Christy, and her family. It was Papa’s 80^th birthday celebration, complete with aunts, uncles and cousins. The kids got to meet everyone and spend quality time with Papa and Patrish, which they all loved.

Our final event included surgery for Abby. Early this month Abby had her Vagus Nerve Stimulator implanted. It sits under her skin right below her collar bone and has wires which wrap around the vagus nerve in her neck. Her seizures have escalated out of control over the past year, and this is the next step of treatment. Now that it has been activated the implant sends small electrical pulses every 5 minutes. It interrupts the electrical “storms” happening in her brain producing the seizures. We have a magnet that we can use to wave over the device during a seizure, causing an extra “dose” of pulses to be discharged. It actually works to bring her out of a seizure more quickly! We hope to wean Abby off some of her seizure medication in the New Year.

Each and every day we turn Abby (and all the worries) over to the Lord. Only He can bring comfort, healing and renewal to our girl. If we’ve learned one thing through the past four years, it’s that we need our savior to intervene on our behalf daily.

Christmas is always a special season for our family. This year just like all the previous ones, we are humbled by the Lord’s provision for us. We are surrounded by His love sent to us through family and friends, near and far away.

Draw near to the Lord in the coming New Year, for His love endures forever!

Love,

Patrick, Patty, Abby and Josiah

Activation Day!

Monday we took Abby to Dr. M's office to have her VNS activated! We were excited and anxious as we waited for him to program the device. Abby sat in her chair seemingly aware that something important was about to happen.

The Dr. put his programming "wand" over her chest where the implant sits and started the electrical impulses. We watched her closely for any reaction. Honestly we were a little afraid she might get scared and wig out! Instead she sat very still and had that look of concentration on her face. She did feel the stimulation but wasn't bothered by it. Whew.

Since Monday we've noticed very subtle behavioral signs when she receives the impulses. Sometimes she gulps, has a gag or cough, and once or twice has started "singing" and we noticed a higher pitch to her voice. Most of the time we can't tell it is delivering the impulses.

More good news. Yesterday she had 3 big seizures during which I dashed to grab her magnet. After briefly waving the magnet over the implant I watched as she slowly came out of the seizure! I almost couldn't believe my eyes. Abby seemed to be surprised too! She calmed down quicker than usual, although she was still very sleepy afterwards.

I had to sit there and just thank the Lord for giving us some way to help Abby. It's not a cure, but it sure beats watching her helplessly as she suffers through another terrible seizure. Praise Him for answering our prayers.

Here's Josiah listening to the "IPOP"... as he calls our Ipod. It is really funny. We are amazed at how quickly he figures things out. Before we knew it he was unplugging the ear phones from the Ipod and finding other appliances to plug them in to! Yikes.