Here’s the plan

July 27th, 2010

Verity saw the pediatric cardiologist at the Lancaster location of the Hershey Children’s Heart Group today.  More properly, the pediatric cardiologist saw Verity.  Verity slept soundly from last evening until we got home from her appointment in the late afternoon today.  She stayed barely awake for an hour, and has been sound asleep ever since.

By appointment time, we were again so thankful that we were taking her in.  More and more, we are seeing very labored breathing, sweating, pale/mottled skin, hardly taking anything by mouth, and sleeping nearly all the time.  She now looks to me like she is ill.  (I’m having trouble getting good pictures of her because of this.)

She has also begun to show signs of acid reflux, which Dr. Chowdhury said was to be expected at this time.  She acts uncomfortable if she’s asleep when we feed her, and downright fussy if she’s awake when we feed her.  And she has been choking and spitting up increasingly over the past few days.  We are to keep her in an upright position at all times and slow her tube feedings way down.  If she still spits up, the next step is to feed her smaller amounts more often.  They will not give her acid reflux medication.  The cause of her reflux, and all her symptoms of congestive heart failure, is her heart defect.

She is already receiving the maximum dose of Lasix.  The doctor said “a massive amount.”  It cannot be increased any further.


It is time. 

Her open heart surgery is scheduled for next Wednesday, August 4th.

If her acid reflux increases to the point where she is not keeping enough food down, we’re to call the doctor’s personal cell phone number, and the surgery will be moved up closer.

We liked Dr. Chowdhury very much.  She explained that she is the doctor in the group who cares for all the infant congestive heart failure cases.  She also had a lot of specialized knowledge about Down syndrome.  After learning that, you can imagine we were excited to hear that she will be the doctor who goes to the Clinic for Special Children once a month to follow up on all their patients with cardiac issues!  So we will most likely be seeing her many more times over the following months.

In spite of how prepared we have been for so many months, now that surgery is imminent, it seems so unreal that we are having this discussion.  We, Joe and Susanna, have an infant daughter who will be getting her heart repaired.  It sounds like something that happens in other families, far away from anything we have ever experienced.

But at the same time, next Wednesday can’t get here soon enough for us.

It looks to us like it will be a very long week, indeed.  She is already “not present.”  I miss interacting with her.  Did I really see her smile?  Or had I imagined that?  It seems so long ago.

It is hard to see and hear her struggling so much to get her ragged breaths of air.

Joe said it reminds him of the end of pregnancy.  By the time labor comes, a mother is so uncomfortable that she is ready to go through just about anything to have that baby be born.  By the time Verity’s surgery comes, we will be so relieved to hand her over to those who can fix her poor little broken heart.

Dr Chowdhury said the hospital will call us tomorrow to let us know when we need to take Verity to Hershey to get all the pre-operative work done.  She thought it would probably be Thursday, since we will be meeting with the surgeons, and that is the day they do not schedule any surgeries.

She said we should plan on a week’s stay in the hospital, so between now and Tuesday night, we need to prepare and pack for that.  I hope to finish that task by this weekend just in case.

Tonight I am completely worn down and out.  We are so, so grateful that tomorrow I can rest, with our children spending the day with our friends again!  It’s been a week and a half since I’ve had a day to sleep between all the feedings, and some of that time was spent in the hospital.  It’s getting hard to collect my thoughts!

We are thanking the Lord for all of you who are so lovingly and faithfully praying for us.  We are praying that He will pour back into your lives many times over what you have been pouring into ours.

P.S.  If you have sent or given us help of any kind and have not yet received a thank you note, do not despair!  If the Lord tarries, you will eventually receive one!  The delay is not caused by any lack of gratitude or of thank you note cards and stamps on our parts!  :-)

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14 Responses to “Here’s the plan”

  1. Melissa says:

    Verity will do wonderful with the surgery and the change in her afterwards will be amazing.  You all will be in my prayers.

  2. Samantha says:

    We will be praying for all of you, Susanna.

  3. Esther~Daybyday says:

    So thankful that little Miss Verity has a surgery date!!  I will be praying for her and for your whole family!!

  4. Ashley says:

    Everything will be okay! Verity will come out stronger and healthier. Praying for strength for Verity and wisdom for the surgeons, doctors, and nurses who will be taking care of her. <3

  5. Stephanie Blanchard says:

    ((HUGS)) I’m happy to hear that you have a date for Verity’s surgery! I’ll be praying for you preparation, the surgery, the hospital stay, guidance from the Great Physician for Verity’s doctors, your endurance, and a VERY nice, caring set of nurses too!

  6. God knew the date and he knows the outcome.  If we didn’t know Him the pain of waiting would be much worse.   I am glad you finally have a date to look forward to.

  7. Becky says:

    Praying for you guys everyday! 

  8. Kristin says:

    Praying for you here too!

  9. Erin says:

    I carefully read all of your posts, they find me through my email on my phone, sometimes Im reading about verity in my car, or outside, at the zoo or park, always praying for a good update…thinking of her …and recently have been encouraged by your honesty through your experiences, I too have gone through rather troubling times with family members who are christians, your scripture you use and honesty is humbling and beautiful. hugs to you, now let the praying begin for surgery! hugs to you all

  10. Angiedawn says:

    I am so glad she has a surgery date.As frightening as surgery seems,the alternative is much more frightening.I thought Joe’s example was such a good one! I am not saying that from experience but I definitely think I would feel the same if it were my baby.Her surgery is on my ds’s birthday.I will definitely be praying for her and all of you.


  11. Ruth Einfeld says:

    I am praying for you and Verity and your family – I will pray that she will do well and stay healthy (Esther surgery had to be re-scheduled several times as you may remember due to her having a cold…).
    Hold tight to Jesus, take one minute at a time, get all the rest you can and eat well so you can go the distance without getting ill…God’s grace is sufficient for the trials of today….do not worry about tomorrow, as He doesn’t not give grace for the “what if”s.
    In Christ,

  12. Grandma Sally says:

    Oh, Verity, my heart’s first response for you was panic and fear.  But our only rest is in our heavenly Father.  Praying for you……love grandma sally

  13. I am praying for you and your family!  *hug*

  14. Natalia says:

    Dear Susanna
    My 18 month old daughter (who will be 15 years old this week) had congestive heart failure for months or even a year, but it was only recognized when it was acute.  That was a Monday at the local hospital, by Tuesday we were in the specialist hospital, and Thursday was her surgery.  I don’t believe she would have made it one week.  She had a different defect of course, but if I had a baby in Verity’s position, our having already been through Charis’s experience, I would be banging on doors for faster surgery and freaking out!  These are obviously people very familiar with and prepared for Verity’s heart condition and her needs so I am *not* suggesting that is what you should be doing, but of course I am concerned for her.  (((Tears)))
    I am praying for her and for you, with love,

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