Getting ready to leave the hospital

Hello everyone, Nick here again.

Thank you. Thank God for all of you!

God has been good to us with the outpouring of love and compassion from His people. Through you we feel and experience God's love.

We praise Him for that.

It's humbling to realize that God is using us to touch so many people and to cause so many to turn their hearts and minds in prayer to Him. This begins to explain how God uses human tragedy as part of His plan since we humans so easily and quickly forget our God when all goes well. If He gave us Heaven on earth then I think most of us would fall away and lose our dependence on Him. So, as painful as these trials may be we thank God for them and can even begin to say together with James, "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance."

We continue to prepare to leave the hospital and return home. Of course this doesn't happen as quickly as we would like but the hospital staff are doing their best to fulfil our wishes. Thankfully small miracles have been occuring since Amryn is doing much better today. She is tolerating the NG (nasal feeding tube which drops the food directly into her stomach) and is getting 60 ML of Lisa's breastmilk every 3-4 hours. Lisa is still able to also breastfeed Amryn whenever she needs to be settled. It is very rewarding for Lisa to be able to satisfy Amryn this way since she almost always falls asleep at her breast. Amryn needs the NG tube though because she only drinks for a few minutes before falling asleep. So this combination seems to be working very well for both mother and daughter.

The IV has been removed since it was starting to cause her hand to swell. It was no longer needed anyway. It's great to be able to remove these tubes and the other monitoring devices as well. Now all that Amryn has is the small NG tube which is about 2 feet long coming out of her nose. Apparently it doesn't bother her much (older kids say they don't notice it after a while). When we need to feed her we just hook it up to a food pump which slowly drips the breastmilk at 60 ML per hour directly into her stomach. We can also add medicines this way as well. Although Amryn doesn't need any medicine except for Sodium Bicarbonate (baking soda, really) which neutralizes the high lactic acid levels. This simple "medicine" works and helps lower her acid levels to normal. This is good news since the high levels of lactic acid were causing Amryn to "space out" and could potentially kill her if not controlled. She is now much more alert during her awake times with great big bright blue eyes that are irresistable to look at. They look like windows into heaven. (We'll have to post some photos later.)

Now all of this has markedly improved Amryn's condition and we can even notice that she's starting to put on weight and is looking healthier. We thank God for this and look forward to being able to spend some quality days, perhaps weeks and maybe even months with her. But all this is simply treating symptoms. The underlining disease continues it's relentless march as her cells continue to multiply and become increasingly defective. It's like a bad photocopy that you keep copying and re-copying -- eventually the end result is a blurry mess. The doctors have no clue about how quickly the disease will progress. Apparently it began already at conception and has progressed rapidly enough for us to see these symptoms at birth. Today they did ultrasounds of her internal organs, her heart, and her brain to determine what state they are in. We haven't received those results yet but they might come back as normal since the disease functions at the cellular level. Rachel did not have any obvious visible internal failures until the very end when her liver became enlarged.

But our desire is to return home as soon as possible so that we can enjoy Amryn in as normal an environment as possible. I had hoped to be home today but it looks like tomorrow (Tuesday) is more realistic. Lisa and I are being trained to provide the necessary care. Lisa's mom is offering to live with us and help Lisa during the day and to care for Lydia and Robyn as well. Our girls came and visited Amryn on Sunday which was a joy for us. Lydia dearly loves her "baby Amryn" or "my first baby sister" and wants to smother her with kisses and pats on the head. Robyn is a bit more quiet and notices that she "looks just like Rachel". We've explained to her that like Rachel she is dying and will soon go to heaevn to be with Rachel. Robyn thought this would happen all along since she has said before that, "perhaps God wants you to have two daughters on earth and two daughters in heaven". In her mind it seems to make sense that Rachel needs a sister too.

Robyn went to school today and she appears to be taking it quite well. She even went without her "Rachel dog" and "Killer Whale" stuffies that she ALWAYS takes to school -- "They're my friends!" (Henry and Trish, that killer whale is still the one you gave her when we went to Sea World in Florida. She's quite devoted in her friendships!)

We love our girls and want to thank Omi (Lisa's mom) and Rachel (Lisa's sister) for taking care of our two rascals. It's good that they have places where they feel loved and at home. But it's also good to be a family together once again soon.

Note:
The blog has been very helpful in assisting us in communicating with you all and receiving your thoughts and love. It is difficult and exhausting to talk to many people on the phone or to receive visitors. I suspect too that when we are home we would appreciate peace and quiet. The visits and phone calls should probably wait until later. Lisa reads all your comments and emails and appreciates them very much. Just let Lisa know that you're there for her if she needs you. Thank you and we love you all!

If any of you would like to send a personal email you can reach us at nicknlisa@gmail.com