The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Thursday, May 29, 2014

Baby



BABY!!

We have waited to post our news that we are expecting another baby for a couple reasons;  One, it has taken us a bit of time to get through the shock factor.  Two, we wanted to wait until we passed the first trimester and knew the baby's gender.  So here it is:  We are having a little BOY--due August 18th.

Many of our friends and family have had asked about the probability of this baby having SCID, etc.

Of course we are nervous, but even more so we are thankful and excited.  Gender does not matter, regardless it is a 75% chance the baby will not have SCID.  It is also a 25% chance the baby could be a possible match for Alice if ever the need arises.  Of course it would only matter if the baby is healthy as far as being able to donate.  We plan to save the cord blood no matter what.

We met with a Maternal Fetal Medicine specialist and discussed all our options with testing the baby before birth.  This can be done through the amniotic fluid, but should be done before 23 weeks or after 37 weeks because of the risk of triggering labor.  We chose to wait until the baby was considered full term at 37 weeks and even more likely will wait until after he is born, which is of course the safest route.  If we do not know the baby's health status at the time of delivery, we will deliver at the University of Utah and baby will go into isolation until preliminary results are available...approx. 2 days for results.

We hope and pray that this little one will be healthy, of course.

I was telling a friend the other day that I remember praying "before children days" that when I do have children--that they would just be smart kids....hmmm!  Why not healthy-didn't cross my mind.  Anyway it's silly sometimes how we view our futures before they unfold.

We appreciate all the love and support we have received in regards to this new step in our lives.  We know it is a big thing, and we are thankful that it feels right.

Lisy

**Alice has already named the Baby---he will be called "Kipper Snacks".  It has taken her a little while to accept the fact that Kipper Snacks will be his fun playful name...we haven't yet decided on a 'real' name.

21 comments:

  1. Lisy ! I'm SO excited for you guys. I remember our little conversation in Jamie's car last time we went to dinner(: What a lucky boy to be joining the Lisy Tyler Fish Fam! Congratulations.

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  2. We are so excited for you! Any baby born into the Fish family is a blessed baby indeed!

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  3. Yay!!! How exciting for you!! Kipper will be a wonderful addition. :)

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  4. Wahoo!!! Congratulations, evening up the numbers ��

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  5. So happy for you guys. Carrie told me a month or so ago after she ran into you at the boutique. These little cabooses are so much fun. What's wrong with Kipper Snacks? After all it is a fish! You could always go partway with the name, and name him Kip. What a blessed little boy to have you and Tyler for parents. You guys will continue to be in my prayers.
    JaNean

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  6. Best news EVER! Congrats Lisy, I can't think of better parents than you and Tyler. Your amazing in all ways :)

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  7. Tyler and Lisy, congratulations! That is such a brave and commendable step and I admire you more than you could ever know! Kipper is blessed to be a part of an amazing family! I pray for health for your new little man :)

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  8. I'm sorry, but I just see it as selfish to take the risk. I just don't get it, after all Natalie and especially Alice have gone through and are still going through.

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    1. Lucky it's not your place to make that judgement.

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    2. You can never judge a situation you yourself are not in...Lisy and Tyler are AMAZING parents who are being guided and watched over by a very loving Heavenly Father who knows this baby belongs in the Fish household...If you can't see this, I am very sorry for you! Having a SCID child myself I know the blessings and healing that can come from other siblings to share love and hard times with...their family will be JUST FINE!!

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    3. Well said Jill! Melanie and anonymous below, did you not read the part that said, "it has taken us a bit of time to get through the shock factor."? Lisy and Tyler know better than anyone the risks of having a baby with SCID. They wouldn't take having another baby lightly. That said, whether they were planning to have another baby or not, is not our place to judge. My prayer is that this new little guy won't have SCID, but who else would be better equipped to take care of him if he does, than Tyler and Lisy! And thankfully they now know there's a possibility and can diagnose it at or before birth and give him the medical help he'll need if he does, right from the start. Their family needs all the love and support they can get and don't need the negative comments from people who obviously don't know them. Congrats again, Tyler and Lisy, you are wonderful parents and any child born to you is truly blessed! Thanks for your example of faith and trust in the Lord. Kipper is going to bring so much joy and happiness into your lives!
      Love ya!
      JaNean

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  9. I am not sure how you can call them selfish. Not only has Natalie and Alice been through a lot, but imagine as a parent how much they have gone through. I cannot imagine the worry. I have healthy children and am constantly worried about their well being. I worry about germs all the time, so I can't imagine the constant stress of a child with no immune system. If anything, I think you are brave. I would be terrified under your circumstances. It just shows how much faith you both have. Congratulations!

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  10. Aaaahhh, that's so crazy and SO AWESOME!!! I'm so happy for you guys!

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  11. Thank you Melanie Jones for having the guts to say this. There are many, many other people who feel the same way. Wow, all I will say is this is really very sad for the children, all of the children, all of them.

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    1. I'm sure the children are more than happy to have another sibling to join the family. No wonder Lisy and Tyler were so afraid to tell people their happy news, they were afraid of people reacting just the way you are. There are not "many, many" other people that feel that way. You and miss Melanie are in it alone. Another baby will be nothing but a blessing for the children, "all of the children, all of them."

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  12. I do need to say I wholeheartedly wish them all the best, sincerely.

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  13. CONGRATULATIONS!! This baby or should I say Kipper Snacks, ;) is very lucky to be coming to your family!!

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  14. Congrats!!! I'm so excited for your amazing family!!!

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  15. I am catching up on what you guys are up to...congrats on baby Kip. I hope he will be just as awesome as Kip Dynamite. I look forward to his arrival next month!

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