Posted by: Philip Rushton | June 28, 2012

The Latest on James

Hey Everyone,

We feel so blessed to have the support of all our friends and family at the church and up North.  A number of you have been asking about how James is doing after he made it back on to the prayer chain this week.  Thank you for your concern!  I thought I’d write a more detailed update to both keep you in the loop and simply to get things off my mind!

Last week James started struggling to eat.  He would only last a few minutes at a time and he became very irritable.  We decided to have a consult with a lactation specialist, and lucked out by having Becky Nelson!  At that appointment we discovered that James had only gained about 2 ounces in the past couple of weeks when to goal was an ounce a day.  He had fallen to a very low percentile in weight for his age.  We also discovered that there were no problems with his latch or with our feeding techniques, but he simply was too overwhelmed to eat.   From there we were able to contact the specialist in Portland and he decided to up his meds to the max level he can handle with his little kidneys.  The meds help drain the excess fluid in his lungs caused by his congestive heart failure.

On Tuesday we met with the specialist in Portland.  He had gained a few ounces over the weekend, which was a good sign.  We also started him on some anti-reflux meds and have been attempting to supplement all his meals with extra calories.

However, it has been slow going. We are both pretty burned out.  He can only eat a bit at a time, which means smaller but more frequent feedings. He is also struggling to transition to full time supplement, so we have had to back off and are now trying to ease him into this new diet.  The specialist wants to see him in 2 weeks and if he is not gaining weight they may have to intervene surgically sooner then they would like.  We are hoping to get him to the 4-6 month range, which is a month away.  The longer we can push it the better.  Infants under 4 months often do not handle the anesthesia and the heart lung by-pass machine as well.

Another bump we have run into is that our cardiologist is so booked up that we can’t get in to see him for 5 weeks even though he needs to see him sooner.  Please pray that an appointment will open up sooner for James.  The administrative assistant has notified him of this problem in scheduling and we are hoping to hear that we can get a new appointment.

Please pray for stamina and endurance for the three of us – James and Julie especially.  Pray also for wisdom as we seek to find the best way to get James the calories he needs. There is a sense of helplessness on our end when he struggles to eat.

Nevertheless, we are thankful for the many happy moments throughout the day.  James is in good spirits considering all the stress he is under.  His smile makes it all worth it and keeps us going! There is also an end in sight. We are thankful that there is a surgical operation that can fix his problem permanently. Sixty years ago kids with Tetrology of Fallot often did not survive past their first couple of years. Now survival is assumed because the surgery is so successful.

Thanks again for all your love and support!

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Responses

  1. Thanks for sharing Phil and Julie – hard stuff to endure as parents. Glad you have James’ smile to keep things in perspective 🙂

    Will keep praying!

  2. Julie and Phil, my heartfelt love to the 3 of you. Always in my prayers that James will come out of all this as a strong little guy who will be happy and healthy, guided by the strong love we all feel for the 3 of you. Thank you for keeping us posted. Love you!

  3. love to see those happy smiles!

  4. Hi Phil,
    James is so cute and what a lovely smile. Just wanted to let you know our prayers and thoughts are with all three of you. Say hi to Julie for us and a big kiss for James. Uncle Leonard and I are thinking about you.
    Take care. Aunt Debbie

  5. My heart goes out to you all. I will continue to pray. Wish I could do more.
    Margaret Meharg

  6. Hi, I will Pray for your James to gain more energy and to become stronger so he can grow to the right age and be at a safe weight for surgery. Have you ever tried a supplement called Doulcal. It adds 25 calories per scoop. My daughter had an emergency OHS when she was at the end of three month old. and afterwards struggled with weight gain. Our dietian suggested the doulcal and it has been amazing. We have finally started to improve on her weight. Not sure if Little James is at the right age for it, but it could be worth a shot.

    • Thanks for the suggestion! We will ask our doctor / nutritionist about it! All the best with your daughter as well!

  7. We’re joining the rest with our prayers for strength for you and Julie, and healing for James. He sure is a cutie!
    love,
    Victoria and Henry

  8. Prayers and hugs and best wishes for you all. God will only give you what you can handle…keep that in mind and place it in His hands. A solution for eating will appear, or an appointment will open up for you, of this I am sure. With so many praying for you and hoping for you, it can only go well. Bless you,
    Clare Ellison

  9. You and sweet sweet james are Constantly in our prayers.

  10. James is such an adorable little blessing and my whole family is praying for his health! You are all such an inspiration to me, just like he is an inspiration to you.
    With lots of love,
    Noelle


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