Tuesday, November 4, 2008
It was a long wait with a hungry baby who wasnt allowed to eat from 6:00am when Evie woke till her procedure began at 10:30. She was so worn out by the time they gave her the oral sedation, that she dozed off immediately. The proceedure took over an hour and the technician did a very thorough ECHO. Dr. Graham who is a fabulous doctor we got to know when Evie was in ICU read the ECHO and discussed it with us afterwards. The good news is, her heart function looks great. We discussed a few anomolies like her VSD and her pulmonary artery which is slightly narrowed which he said could potentially exasterbate a problem, however could not be the cause of all the trouble she is experiencing. So the bad news is, we still dont know! Dr. Graham has welcomed communication from our Pulmonologist in Columbia, so hopefully the two can collaborate and come up with a plan for what needs to be investigated next.
We left with Evie still feeling very dopey. She was given strict instructions not to drive a car or opperate any heavy machinery for the next 24 hours:-)
We visited the Pediatric Cardiac ICU and the 7C recovery floor…what was our home-away-from-home for nearly a month. We took cookies to our wonderful nurse friends. They are the best. With the hundreds of kids they see every year, it seems they remember every one and love seeing them come back healthy. Its amazing how all the memories and emotion come flooding back. Walking in the hugs metal double doors into ICU …the basin we scrubbed up at every day…the overwhelming sterile smell…the rhythmic constant beeping of dozens of monitors. It was an emotional moment to leave carrying my precious girl. I felt teary remembering the many nights I cried kissing Evie goodnite, exiting the doors and leaving my daughter for someone else to care for through the night. So grateful to be able to carry her out!
We’re headed back to Columbia today. Evie started throwing up last night so Im wondering if she has another bug coming on and another chance for doctors to see her in one of her “spells”. Continue to pray for wisdom for what the next step should be. Thanks for praying us through the latest!
a sleepy girl after her long day!
Thursday, October 30, 2008
I was only gone an hour.
Since we brought Evie home after her open-heart surgery, I can count on one hand the number of times she has been more than 100 feet away from me. Last night was girls-night-out for a girlfriends birthday. I gave Evie her meds, fed her and put her to sleep before leaving. (Oh, and checked the monitor twice to make sure C could hear her all the way downstairs.) Since its been 9 months since I’ve gone anywhere without a diaper bag, I couldn’t even find my purse to put my keys and cell phone in.
I got that sick feeling two miles down the road. I couldn’t reach behind my seat to feel her little chest rise and fall. The silence was deafening.
Resolved to have a good time, I continued.
I did finish a delectable piece of cake before my phone rang…I saw it was C calling.
“What’s wrong?” I answered. (C is “Mr. calm, cool and collected”, is very capable with the kids and I knew would only be calling if there were a reason!) He explained that Evie had woken up three times, her oxygen was way down and she seemed to be having some trouble breathing.
I got in my car and headed back grateful that most of the drive is back-roads and that it was unlikely that cops would be monitoring speed at this hour. I prayed. I tried to wish away the miles between her and I. I vowed not to leave her side for another six months.
I’ll admit it. When you watch your baby go through everything Evie has gone through, its easy to let your mind wander to the worst case scenario. The drive back seemed endless!
C had her peacefully sleeping after a breathing treatment when I got home. We had her on some oxygen for a while and her sats came back up. I checked fingers and toes for blueness. Listened to breathing. Evaluated heart-rate.
She was fine.
I wasnt!
Such is life with these little heart-babies.
It means falling asleep watching the digital line dancing up and down on her monitor indicating her heart is beating
It means second guessing every gurgle, hic-up and coo from the back-seat.
It means worrying that every bug or infection could turn into something life-threatening
It means constant acknowledgement that every breath is a gift from the Lord
It means having home, beeper and cell phone numbers for 5 doctors that you are on a first-name-basis with
It means choosing not to go to church, the mall, a party because of exposure to germs
It means thanking God for the privilege of each dirty diaper I get to change
It means standing over her crib praying for another day to love her
It means thanking the Lord each morning when she wakes and smiles that He has given her another day
Evie’s new foot-less pajamas…thanks Auntie Rebecca!
And her pink toothbrush that she LOVES! Now we just need some teeth!
Wednesday, October 29, 2008
Evie’s CT scan was reviewed by the specialist yesterday. While there is visible distortion of the pulmonary arteries, it was explained that hers is not more severe than any other “Transposition baby” and that more tests need to be done. Monday we will go back to MUSC in Charleston to have a sedated echocardiogram which should give them a better picture of her heart function and hopefully explain why she continues to have poor oxygenation!
Pray with us:
-That her breathing issues would not be further compromised under anesthesia and that a ventilator will not be necessary.
-For insight for Doctors and answers to come from the ECHO. We would really like to avoid having a heart cath done.
-For grace to receive whatever prognosis!
A dear friend shared these verses I have been meditating on today! There is great comfort in the promises!
Psalm 27
1)The Lord is my light and my Salvation, whom shall I fear
The Lord is the stronghold of my life, of whom shall I be afraid
3) my heart will not fear
…yet i will be confident
5) For He will hide me in His shelter in the day of trouble
7) Hear O Lord when I cry aloud
be gracious to me and answer me
10) But the Lord will take me in
13) I believe I shall look upon the goodness of the Lord
14) Wait for the Lord
be strong and let your heart take courage;
Wait for the Lord!
