Return to Children's

(flight nurses getting Abby ready)

Wednesday afternoon Abby was discharged home from the hospital where she continued to have seizures and began doing poorly.

We became concerned after the 6th seizure when her abdominal incision bled a little bit into the dressing and she had a low grade fever. The neurosurgery resident on-call reassured us over the phone that increased seizure activity is normal after a shunt placement. The shunt relieved so much pressure (ICP) so quickly that it can cause the brain to become irritable.

Just minutes after talking with him Abby went into a status seizure (prolonged). So we rushed to the ER. Fortunately the Diastat given at home stopped the seizure after 17 minutes and she didn't need any more meds.

They scanned her head and did a shunt series of x-rays to make sure it was still functioning, in addition to blood work etc. Because she had a fever above 101 at this point the doctors decided to transfer her back to Children's in Birmingham, where she could be more closely monitored.

She didn't just get transferred, she got to FLY to Children's in a helicopter! We were very surprised this was happening and for obvious reasons caused our anxiety levels to jump up a few notches. (the flight nurses were both NICU nurses for over 10 years and bonded quickly to Abby)

Long story short - the shunt was working properly, she went all night without any more fevers or seizures, and we got to bring her home again Thursday mid-morning. She has been seizure free since coming home which has allowed her to rest much more comfortably.

Thank you to all who prayed for our girl. It's been a rough week but we are so grateful she is still here with us, cozy and safe on our couch!

Thank you Lord for the peace and strength you give in times of crisis.

Shunt Revision

(Abby and Mommy before surgery)

It's been a long day for our sweet girl. This morning she underwent an emergency surgery to fix a broken shunt.

Over the past 8 days or so Abby hasn't been feeling well. Lots of sleeping, some occasional vomiting and neck stiffness. As usual for us when Abby seems ill, it's a guessing game trying to figure out where the real problem lies.

Yesterday morning I felt a fairly large lump on the back of her neck, superficial to her VP shunt tubing. Our pediatrician set up an appointment for us with our neurosurgeon after examining her.

This morning when we arrived at Children's they checked her out and quickly hooked her up to a pulse oximeter (measures O2 saturation in the blood and heart rate). Because her heart rate was in the 50's, things started happening very quickly.

Within minutes they took her to CT/X-ray. Once the doctor reviewed the images of her ventricles Abby was whisked off to surgery within 30 minutes. (Her lateral and 3rd ventricles were significantly enlarged)

She came through surgery without any problems with her heart rate or anesthesia. Her shunt is repaired with new tubing and a new valve. The doc told us it is possible the device could fracture again in the future because of the location it was placed. If she needs another revision some time down the road, he will be forced to place a different type of shunt up higher on her head... it's a more involved procedure, which is why he didn't do it today.

(getting comfy after surgery)

It's 9 pm and Abby is resting comfortably after getting pain meds. If she does well tonight with her feeds and doesn't show any signs of infection/complications we expect to head home tomorrow.

We are so very thankful to the Lord for leading us to an answer for Abby's illness and a caring group of people who helped bring relief.

Sitting in room 690 with my girl resting peacefully beside me is so wonderful. Knowing that she feels better and hoping that we will start to see the "real" Abby soon has truly lifted a heaviness from my heart.

Thank you Lord for your faithfulness!

March for Babies

Untitled from patty hull on Vimeo.

Once a year families all over America whose lives have been touched by prematurity will walk together to raise money for the March of Dimes. Every family has their own story to tell. Stories not unlike our own. An early and unexpected delivery followed by months of uncertainty in a neonatal intensive care unit. Words can't describe the anguish a parent experiences watching their child struggle for life.

Most of you know our story.

During Abby's 6 month stay in the NICU at East TN Children's Hospital we prayed for life. We prayed for Abby to have a chance to live and for her life to bring glory to God. She experienced 11 surgeries, 25 blood transfusions, multiple infections and countless other challenges before finally coming home.

God has a purpose and plan for Abby's life and we recognize that the research supported by the March of Dimes helped give Abby her chance to live.

We have also seen the other side of this work. Prematurity prevention!

Through prayer and the blessing of interventions like the Hydroxyprogesterone injection and cervical cerclage (research supported by MOD) our boys were born Full term.

There is hope for future mothers with high risk pregnancies!

On April 24th our family will be Marching for Babies in Knoxville TN with Abby's NICU team.

For details check out our MOD page. Anyone who wants to join us, we'd love to see you there!

(donations supporting our walk are much appreciated! You can safely donate by clicking the MOD widget in the sidebar)

9 Months

It's Spring and my baby is already 9 months old! How can it be? Although some days feel very long, looking back at our pictures time seems to have slipped right through my fingers.

Every day I tell myself to savor the moments.

So at this point in development our little scooter has become our little crawler. He is now mostly on hands and knees, but still scavenging for any and all tiny floor objects! I've tried to capture his newest trick of sitting unassisted while clapping his chubby little hands on camera. (This just makes me smile.)

He is too interested in my toy and won't stay seated.

Still saying mostly "dada" with an occasional "ba" and a rare "mama". Loves to munch on puffs (those quickly dissolving stars most babies love), small pinches of soft bread and every so often a lick of chocolate... thanks only to Daddy!

He is really getting stronger and showing more interest in things on couches and chairs, which has motivated him to get on his knees and sometimes even his wobbly feet. Cruising is just around the corner!

Just love this boy!

Happy 4th Birthday Josiah!

Our little boy isn't so little anymore. Today he is 4 years old!

It's been a fun and full year for our family. Josiah continues to grow and mature and has become such a wonderful big and little brother. We love watching him play with Levi!

Some favorites- straight from the birthday boy:

Lightening McQueen!

His cow (a steadfast from infancy)

cup cakes

listening to stories

Being silly

playing pirates

Happy Birthday sweetheart! We are so proud of the boy you have grown into. You are very special to ALL of us. Here is a short movie highlighting all the fun we had this year... see how much you have changed!

We love you Josiah!

Untitled from patty hull on Vimeo.

Party Time!

Josiah is turning 4 years old tomorrow. I can't believe it! Last weekend we traveled to TN to celebrate with our family and a few friends. The kids brought their riding toys to a church gym and enjoyed pedaling, scooting and crawling (Jack!) to their hearts content. It was fun to watch!

We got to spend some wonderful time with Christy and Lee and their sweet family. (pictures to come!) The weather was perfectly sunny and warm! Saturday we took the kids on a trail hike and watched as they explored the streams, the bugs and carefully chose sticks to 'fish' with. They are all at such fun ages. Jack and Levi were both snoozing quietly by the end of our trek.

Papa and Grandma made us feel so at home, playing with the kids and babysitting so we could go out on a date to Big Ed's Pizza... a local icon and one of our very favorite places to eat.

Updates:

Abby is doing much better. Still having fevers every few evenings with seizures to go along, but she seems to sleep it off and usually wakes up feeling ok. I know, it's strange.

She is gaining back some of her strength and is starting to take steps in her Kid Walk again! Today she did some good exploring of toys with her hands and has been signing again. Instead of sleeping through her therapy sessions, she is back to protesting when prompted to work. It's a good sign of normalcy.

Levi is now getting into a full sitting position all by himself! He topples over sometimes, but catches himself pretty well. We are digging all kinds of interesting things out of his mouth these days. He's a quick little scavenger! I've seen him pull up to kneeling on more than one occasion and I won't be surprised to see him pull to standing very soon. His giggles have become more hearty and his feet are very ticklish. Every day I am just so thankful for such a healthy, chunky, smily boy! It's hard to believe a year ago we were hoping to make it to 30 weeks gestation. So much happens in a year...

Tomorrow is the Big day! Check in for Josiah's B-day movie coming up...

It's March!

I can't believe it's already March and we are finally starting to have some warm days.

After a long month of sickness with Abby she is hopefully turning a corner. Last week she had a few more wakeful days and actually tried to participate during therapy. Physically she is very weak and floppy, but it's good to see her eyes open again!

This past weekend she vomited several times and started running a fever Sunday night. Don't know why exactly except that she just isn't totally well yet. She had 9 seizures yesterday (including 4 during the night). With all of her unpredictability we are just moving forward with our usual daily schedule, but giving her extra time to rest.

The boys are doing great. Levi is still scooting his way all over the house with impressive speed! His hair is getting fluffier and he gives the cutest smile when he claps. He's eating a larger amount of solids now and we all like to take turns feeding him.

Josiah is just getting bigger and looking more like a preschooler. He has a birthday coming up! I can't believe he will be four. He can't wait and frequently tells us that as soon as he turns four, he wants to turn 5!

He is doing some regular chores around the house now including putting his clothes away, helping mommy push the laundry basket back and forth to rooms, sometimes putting dishes away and anything else that I can think of to put him to work. He has a sticker chart to record his scripture memory accomplishments. Once he memorizes 5 we will go on a fun 'date'. These are all really to keep mommy focused and motivated. It's too easy to forget to do the most important things during the day when so many other things distract.

We are all looking forward to warmer weather and time spent outdoors!