Tuesday, January 15, 2008

Nearly 9 Days old

Our little man is doing well. We haven't had to clear out his nose since yesterday afternoon. Thank you for all the suggestions. We kept him in his carseat yesterday so he was a bit more propped up. He slept there too. I didn't want to move him into his bassinet that I can't adjust (because it's a pack n play not a real bassinet) to sit up a bit, so he slept in the carseat too. His cele isn't leaking, and hasn't leaked in 5 days now. Praise God. His circulation still seems a bit off, but if we adjust his position it gets better.
Mom Sams goes home today, which will be sad. I wish we could all go to the airport with her, but I am effectively on house-arrest right now as a carseat isn't really safe for Joshua. Some people have suggested doing a Moses basket type carseat and putting him on his tummy, but his cele is too big I think and he doesn't seem to like being on his tummy yet. So in the meantime, I stay at home. That's okay, I don't like being away from him and he can't travel. So I live vicariously through this and other blogs. :)
Oceana is doing well and doesn't seem to have suffered any sibling-jealousy. She does want to get up in my lap sometimes when Joshua is feeding, but doesn't get angry (beyond being told "No.") about it. Her sleeping habits have gotten out of hand over the last week. I think there's just enough going on and we're just a bit careless about bedtimes and naptimes, so that she's not sleeping well when she does sleep. Last night she woke up at 9, 11, and 3. Finally at 3 I brought her in bed with us, because I need to be near Joshua and can't risk falling asleep in her bed. This seems to be the only major effect on her so far. In response to a question from a poster: No, she doesn't understand the situation. She asks (when she sees his encephalocele) what it is. Matt has said "His encephalocele", I just tell her baby has a "special head". She gives him kisses and holds his hands. I don't know how she'll react when he goes to be with the Lord. I'm wondering if she'll forget, in the same way she forgets when a relative visits and then leaves. She has always adjusted to change really well, that will be a blessing to us in the future. We made a point to include Oceana in his life because we don't want her to question us later in life as to why we didn't let her see him, hold him, interact with him. I think that would be mean. I thought about how I'd have felt if my parents had lost a son and not let me hold him or love on him - I'd feel like I missed out on part of my life.
She is such a precious girl. I can't tell you how good it is that she's our first, rather than Joshua. It is such a blessing to have her. Like I've said before, she is our sunshine. She is the light in our day, the encouragement in our lives. We never lack for entertainment in her presence. She calls him "Baby" and "Shah-wuh".
We were offered (thru this blog) to be included in a local photographer's personal project, called 365. You can check it out at http://www.stateofthenation.co.nz/. Brent wants to include Joshua as one of his portrait subjects. I'm really excited about this as we'll receive the digital image. We wanted a friend of ours to take some family portraits with Joshua, but she left on vacation just a day and a half after we came home from the hospital so it never happened. This is really a blessing to us.
My sister Cate arrived yesterday - nearly by surprise. She received a text from a family friend (who had come to visit Joshua several days before) who asked could she get off work because they want to fly her up to see Joshua. Cate had been here for Christmas, but flew home to Invercargill (bottom of the South Island, we live in the upper half of the North Island. It's 3 days drive and a ferry crossing away). She was able to move her one shift so that she only misses 6 hours of work and got on a flight the next morning. It's such a blessing to have her here. I so wish that my other sister, Havalah, could be here too. She's in New York State at Elim Bible Institute right now.
I was heartbroken and delighted at the same time yesterday, when I read on Tristan Asher's site (on my list) that Mary Grace Summons was born and passed away the other day. Mary Grace had Trisomy 18, as does Tristan. I've found several women online who are on Trisomy 18 journeys. T-18 babies often die in utero, are stillborn, or pass away quickly after birth. There are only a few cases of children over 10, most won't make it to their 1st birthday if they do survive birth. Mary Grace had 7 hours with her 2 big sisters and her parents. What a gift to spend time with her, but how heartbreaking to lose her. I thought this was what we'd be walking through. My heart goes out to this family, who know the same God I know. I know they find (some) comfort in knowing she's with Jesus. But it's still heartbreaking.
I was telling my mom last night about how some people keep wanting to "fix" Joshua. My mom and my sister were remarking on how I have the best attitude of anyone, in regards to Joshua.

Ok, well it doesn't feel like it... but here's what I think.

Joshua is with us for a time. And it's what's supposed to happen. I wish it wasn't happening, I want this situation to have a different outcome. But Joshua has a rare and severe defect. There are some encephaloceles that can be repaired quite easily - with minimal damage to the brain. Some children (with smaller and differently presented celes) go on to live a normal life without any mental deficit. But...this isn't the case for Joshua, as his is an extremely large occipital encephalocele. It is a MIRACLE that Joshua carried to term, was born alive, and is still with us after a 9 days. Everyone (including us) wishes there was something that could fix it (like reconstructing his skull, putting his brain back inside, etc). We all wish there was an answer in this situation. But there's not. It's not as though someone's going to say just the right thing one day and I'll say, "OH THAT'S WHAT'S BEEN MISSING! I wish I'd known that before now, because now this whole thing makes sense. I know why this happened!" There's not an answer, and that's ok. I wish there was - believe me! You think you love Joshua? You think you want Joshua to live? Multiply that by a million and you'll be close to how much I want it!

But there's no answer, there's no fix. We're doing Comfort Care for Joshua. And there's nothing wrong with that. It is not wrong to do that. It's not wrong to stop SEARCHING for an answer. We've looked, we've researched, we've done doctor's appointment upon doctor's appointment. We've been to see 9 doctors (one way or another) and several midwives. We've exhausted the possibilities. There aren't any good ones. And it's okay. We want to enjoy the time we have.

And we are enjoying it.

Who wouldn't enjoy this little face?

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And as a side note: The reason we can't upload a lot of photos is not because of blogger, but our internet company. We have a 10gig upload/download limit per month, otherwise we get an additional charge for each gig we use. So we're close to our limit and have another 9 days before it rolls over. Thank you for the offers to help though!


  1. Susie,

    I have had the fortune to have been following your story for several days now, and am so impressed with your attitude towards what is happening within your family. I found you thru one of the T-18 blogs. Your testimony and sweet spirit are a real blessing to all who read this blog. I am sure there are still more people reading than you know! You probably will never know who all you are blessing this side of heaven, but please, keep on blogging anyway! I love to see daily updates on Joshua and will continue to pray for him and your family.

    Devin in Illinois (USA)

    p.s. For the record, I believe you are doing the right thing by enjoying Joshua while you have the time with him--don't let anyone's comments make you doubt what is truly a decision that ONLY you and your husband can make.

  2. hey this is christina's mom (deb ) AGAIN....every time I want to write it all comes out weird.....well today in EBI chapel we were singing this song & it impacted me a lot.....it goes for ALL of us...."I know for sure all of my days are held in your hand,crafted into your perfect plan ..."

  3. You're right- who couldn't love that face? He's beautiful & you're all amazing Susie!


  4. Thank you for sharing your journey, and Joshua's exceptional birth story; he's a beautiful little boy. Wishing you more sweet and beautiful moments with your son, daughter and husband.

  5. Both your children are sweet, pretty and handsome! My heart goes out to your family.

  6. That is the first time Ive seen his eyes open, what a beautiful little boy. Im still praying and believing for you and your family.

    God bless,


  7. You are right....enjoy him, every minute with him. We should all do that with our children.

  8. Oh you guys...I wish there were more words in the English language that I could use to express all I want to tell you.

    You're absolutely right to make the choice to spend the time you have with your beautiful, miraculous son...and not searching for answers that don't exist. I hope others will understand that, too. Such an incredibly hard decision and very brave of you to make it. I can't imagine how difficult it is.

    When our son was born and we were suddenly innundated with bad news it felt like we were being beat up. It was one thing after another after another...and endless list of birth defects and possibilities for more. Even at the very worst of it, during the most horrible and terrifying times, we were also struck with such overwhelming goodness in the form of support from family, friends, and strangers. I never knew how simple words of encouragement could really help someone until I was the recipient of those words. Now I know.

    So, I hope I can offer you some encouragement and support and strength. I am so impressed by your family. I am praying for you...all the prayers you've requested and then some. I mostly pray for you to be able to enjoy the good and receive the love and support being offered to you.



  9. I'm sorry you feel you have to explain anything about your decisions. I think that's the really bad "flip side" of trying to live transparently. It's a beautiful thing, to allow any of us into your heart, to glimpse the love you feel and to show everyone that each baby is simply a baby, worthy of love. And that you can love someone fully, even if they have a short expected lifespan, knowing the risk of loving them, that you will grieve when they leave you. All of this is the sort of thing we all need to learn, and not all of us will have the same ways to learn it as you, so we grow in learning from you.

    You are the only ones who can make any decisions for Joshua, and clearly you adore him, and your decisions are made out of love for him. I know you have exhausted the possibilities, just hoping there was a way. (You feel "mean" when you have to suction his nose!) We know, we know that you love him.

    Thank you, anyway, for explaining - even though we actually don't "deserve" explanations. But your patient explanation can help others see that all you are about for your baby is loving him for as long as you are given the gift of his presence. And that you are just grateful for that - wishing for more, but grateful anyway.


  10. You can load 100 pictures on your Babyfit Babypage as long as they are smaller then 5 megabytes if you are looking for additional space to share pics. You can link to your Babypage from here as well. Thanks so much for sharing your journey with Joshua.

  11. Perhaps a strange request, but I noticed in the background of this photo i could see one of his feet and I decided I want to see his little toes. I know you can't upload alot right now because of the download limit, but suppose you take them and send them on as you're able? i think baby toes are just amazing! Haha.

    i love you susie, I wish i was there too. I admit, I had a little emo moment when cate told me. I want to be there more than anything right now, but as with Joshua, God has his reasons. Love to you and the whole family. Kisses for my little munchkins :)


  12. Today as I read your blog I had two words go over and over and over in my head...CHERISH and TRUST!

    We all must cherish every moment we are alive. Some reading this may not have as long as Joshua does to live - only God knows! I am so blessed to hear of how you are cherishing Joshua - don't forget to cherish each other too!!! He is such a blessed little boy for God to choose you all to entrust Joshua to for all the days of his life!

    And in all things we must trust HE who created us and knows it all!!! I am reminded of my favorite Bible verse - Jer 29:11-12 "For I know the thoughts I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope. Then you will call upon Me and go and pray to Me, I will listen to you."

    We love you guys and pray for you every day!!!

    Love & Prayers, Pastor Roy & Family in PA

  13. I just wanted to say hi and give you a *hug*. I sort of know what you are feeling and going through - although I do know that every situations is different.

    We too lost our son. We knew he had problems from the 20 week scan. Just like Josh he survived to term. The doctors did not expect him too but he did. We got 4 beautiful days with our Sami. Cngrats on making it so far I hope you get many more days with your Josh. He is so cute.

  14. I don't know you, but I'm happy every day I open this and see that you got another day. I am happy for every day you get to spend with Joshua.

  15. Susie, You are amazing! Matt and you were hand picked by God to recieve the blessing that Joshua is becaus he knew how wonderful you would be with him. He is a beautiful miracle. Every day is a blessing. My heart does break for this situation, but I know that God is faithful to carry you all through. I love you all like my own family. I will continue to pray for you all.

    Debbie Seiders

  16. i don't pray or believe in god or anything, but i do believe in the value of life, nature, and love. You have the most natural, humble love and this amazing peaceful energy, all for this little tiny life and it is truly incredible. I hope you all are having a wonderful day.

    Lots of Love,

  17. Susie,
    I have just recently found out about your story on babyfit.com, I want you to know I am praying for you and her family. Joshua is a very handsom lil man. He is a very strong baby, what the doctor's said he wouldn't survive..he did. His life is in God's hands and God will take care of him and your family. I am also very impressed with your outlook, you are a very strong person as well. I am a new mommy and I lil girl is 7 months old and I worry about her every second of the day, I commend you Susie.....God Bless

  18. I cannot find the words to say how I felt reading your story...and although I knew nothing about you until today. Your family has touched my heart deeply. It has been amazing to hear your journey...I pray for enduring peace for your family. Your son is precious....he has already been a gift to so many. Your in my thoughts & prayers. God Bless you all!!!!!

    Thinking of you in W.Va.!!!

  19. susie,

    I sent you an e-mail I hope you get it soon! Thank you for the continued updates on your beautiful baby boy, wow it's seems like just yeasterday I was doing your hair at your wedding and now you have a beautiful family and a great marraige, Blessings

  20. I loved the portraits that Brent took of you and your sweet Joshua. I'm sure you will cherish those photos forever. He IS such a beautiful boy!!