Wednesday, November 14, 2007

The Latest

We were able to go to Waikato Hospital in Hamilton yesterday to speak with some specialists about Joshua's condition. We have decided that we're going to Auckland for his birth at Auckland City Hospital. ACH is across a parking lot from Starship Children's Hospital, where Joshua will be and have his surgeries.
This ensures:
1. I'll be able to be with him in the first few days of his life, as I'll be in the hospital for at least 2-4 days, recovering from my c-section.
2. He will not need to be transported by ambulance or helicopter an hour and a half north from the Waikato Hospital.
3. He will receive care as soon as possible from the neurosurgeons and pediatric specialists.
4. Matt can stay at the Ronald McDonald House as soon as we arrive in Auckland, so he can be with us at all times.

Yesterday we spoke with a pediatrian, a pediatric surgeon, a pediatric radiologist, and an obstetrician. The surgeon told us that he no longer operates on large encephalocele's like Joshua's, but instead refers them to Dr. Andrew Law. He is a Kiwi surgeon, who was recommended to us by a woman whose son's encephalocele was operated on by him.
Dr. Kakuri (the ped. surgeon) highly recommended Dr. Law, and I feel confident having heard two HIGH recommendations of his abilities.
We were told that it is not so much the surgery that is the risky part for Joshua, but the recovery. His brain tissue may not all fit back in his skull, causing the surgeons to have to "sacrifice" some of his brain in order to "fit it all back in".
We have been told to expect potential problems with feeding and breathing, as well as blindness, and disabilities. But again, none of that can be diagnosed until he is born and they can actually look at his features, check his blood, do MRIs and the like.
We were also told that his recovery time in Starship Hospital will most likely be in the realm of weeks, verses months. I was thrilled to hear that, as I was expecting to possibly be in the hospital until March or April with him.

I want to explain something I've been thinking about a lot. The word MIRACLE.
Often times we think of a miracle in Joshua's situation as, "He could be born without any defect, his head in perfect shape, his brain in complete order, and no other problem. He could be completely normal at birth". However, I want to tell you, I have seen these ultrasounds, I have seen what is there. This isn't like when doctors misinterpret an ultrasound and say the baby's measuring big, when they're not. This is serious, and it's very, very obvious when you're looking at it. While I believe that God could totally change everything about Joshua's brain and skull - so he could be born "normally" - I also believe God sometimes chooses miracles that baffle us humans.
Please understand that I am not saying I don't believe in miracles. I do. But in Joshua's case, I believe that God can do specific things to heal Joshua, through surgery and recovery. With that said, here is a list of specific things that we would like prayer for. Please feel free to repost this, or email it on to people. I have no qualms whatsoever about people passing on our prayer requests for Joshua.

Prayer Requests for Joshua Matthew
1. A continued problem-free pregnancy
2. No contractions. We are 2 hours (during non-rush hour traffic) from the hospital. I cannot go into labor and safely make it to the hospital except possibly by ambulance.
3. A problem-free c-section and delivery. No hemorraging for me, no spinal block issues, no recovery issues, quick recovery of lower abdomen function so I can be signed out of the hospital and be full-time with Joshua.
4. A place for Matt to stay from Day 1 in Auckland, very close to the hospital.
5. No issues with feeding from Day 1. He may not be able to handle everything at once, but when we start feeding, his digestive system needs to cooperate, to give him the best chance possible of a good recovery. We plan to breastfeed him as well, please pray for ease in this.
6. No issues with his breathing or other organ function - to give him the best chance possible.
7. A good surgery, with no complications with general anesthesia, no hitting or cutting or missing anything.
8. Plenty of good skin on his encephalocele to be used to cover over his skull. Otherwise we'll be discussing skin grafts.
9. No sacrificed brain tissue (because of lack of space).
10. Ability to fix the skull to a proper shape.
11. No hydrocephalus (water on the brain) because of diverted fluid pathways. This would require a shunt otherwise.
12. Peace and wellbeing for Oceana during this time, as she may not be able to be with us as much as we would like.
13. God's wisdom to make decisions regarding Joshua.
14. Good working relationships with the surgeons and doctors who are involved in Joshua's and my care.
15. Financial provision for all the expenses involved.
16. A quick, complete recovery for Joshua. Perfect and miraculous ability and brain function after surgery - doctor baffling. :)

Thank you so much everyone. We love you all, and we so appreciate all your prayers.
Susie & Matt Sams


  1. Susie and Matt,

    Please know that Dave and I are praying for you guys, and we think of you often. We pray that God would guide the doctor's hands who perform the surgery to place Joshua's brain into his skull, and we pray for a smooth delivery. Know that you are in our hearts and prayers...

    Dave and rachel

  2. I have been down this road. I am praying for you & your family.

  3. i wish i could be in your life everyday.
    I love you Susie Sams.

  4. Your family is in our prayers I have forwarded you prayer list. We will continue to keep you in our prayers especially as the days get closer.

  5. I'm praying for you. I am really glad wrote out the prayer list - it helps so much.


  6. Hey Susie - here is the link for the banana cream pie - hope you get this! I followed it exactly (which I never do :)) and it turned out delicious. The only thing I would do differently is add whipped cream to the top! :)