Q and A: details about Gideon's life and death and my grief

I have realized that perhaps I have not done the best job explaining what happened with Gideon.  I am no doctor, and obviously I do not have all the answers, but I can sure try to help anyone who cares to understand a little more.  I have had a few friends (and some of my children's friends) ask me different questions about the pictures in our house, and also about what happened.  The week + I spent in the hospital talking to the staff in the NICU and the doctors at U of U, I learned an AWFUL lot of medical stuff I never knew before, and I will try to share.  Please don't be alarmed if you feel like you are drinking out of a fire hose.  That's how I felt every day from July 22nd until August 1st when Gideon passed away, as doctors, nurses, and interns did their best to explain things to me.  I'll start simple though.

Here is a picture we have up in our house that I have NOT put on the web before. I love it, because you can see a little bit more of a personality in this baby.  His little finger by his mouth...I just love it.  He also has less (I know this already looks like a lot) tubes and pipes coming out of him than later in the week after his other surgeries at Primary Children's.  It has sparked a few questions from my children's friends.  "Is that Hyrum when he was a baby?"  "Who is that baby?"  "What happened to that baby?"  "Why does he have that thing on his nose?"

It's one of the earliest pictures we have of him, this is still in the NICU at the University of Utah hospital, before he was transferred to Primary Children's.  You can see that the blood around his umbilical cord stump is still relatively fresh, and they were able to insert some lines straight up through it, to avoid poking him QUITE so many times.  My kids aren't a fan of the bloody umbilical cord area, but I don't care, I just love seeing his little hand by his mouth.

The ANSWERS to those questions in "answering children" format.  This is Gideon, he is the baby I had last summer.  He was born after Hyrum, and he had some problems with his body.  He is not here in our house, because he died and is in heaven.  "Why does he have that thing on his nose?" He was born so early, his lungs were not ready to breathe by themselves..  And because of his big kidneys, his lungs were even less developed than a normal 28 week old baby would have been, so there was no way he could breathe on his own.  The tape is to hold in the tube in his mouth, to help his tiny lungs to breathe.

Of course, in response to answers I gave, many children ask the follow up question that I can't really answer sufficiently.  "WHY?"  I have no answer for that.  Truly, that is the heart stopping question, because I don't really know why.  I can answer it in my heart with "That was God's plan for our family and Gideon" and I truly believe that, but it isn't typically a good enough answer for a child, and some days, it doesn't really feel like a good enough answer to me either.  I still wonder why this is what we were called to bear.

The BIGGER more medical questions, and more personal questions may yield some repetetive answers. This is a very long post, because there is a lot of information I haven't really taken the time to put out there yet.  And a lot of it goes into medical stuff which can be overwhelming, which is why I haven't taken the time to put it out there.

"What was wrong with his body?" and "Did you know about this earlier in your pregnancy?"  "Did they know it was going turn out this way?"  This is a long answer, and I will do my best as a non-doctor to answer it fully without being TOO detailed.  At 20 weeks, when they showed us he was a boy, they detected that the "pipe" that leads from his kidneys to his bladder was obstructed--partially blocked.  (Called a UPJ obstruction, if you want to read up on it, this article covers the bases pretty well, and you can see that it isn't really supposed to be life threatening  UPJ obstruction in fetus.)  They could tell because his kidneys were a bit larger than normal.  His bladder still had fluid, and he still had amniotic fluid, so it was not an emergency, just something to keep an eye on.  It is actually more common than I realized, and I had several people reach out to me who had similar things detected in their babies in ultrasounds and/or at birth, who now have healthy children.  I read up on it, it sounded like if the problem continued, he'd possibly need a surgery after he was born.  For some people I know, the problem corrected itself as the baby grew, for others, it required surgery after baby was born, and then the child was fine.  For us though, the problem progressed, rather than stabilizing or going away.  As we continued to monitor the situation with ultrasounds every other week, the problem stayed the same for a few weeks, and then took a dramatic turn for the worse.  At the last few ultrasounds, his kidneys were larger and larger, and his bladder was less and less full.  The doctors had a much more worried look about them, and my OBGYN who ultrasounded me about a week and a half before Gideon was born said he had never seen hydronephrosis (liquid build up in the kidneys) so bad in a fetus before.  He even left to go call another doctor to make sure they didn't want to check me in and take a better look THAT DAY.  They checked for amniotic fluid (if there is none, the baby is in DANGER!!!), but there was still some, and so I was good to wait until the next week for my next appointment.  (Which turned out to be a really good thing, because my brother got married days later, and then just days after his wedding, I was admitted to the hospital.  I was able to be at the wedding and at the time did NOT know that Gideon's condition would be fatal, so I enjoyed the wedding and the family time much more than if I'd known.)

"Did the doctors know and did you know that his condition was this dangerous?"  It wasn't until the day I was admitted to the U of U that Scott and I got the news that his condition was potentially lethal.  I think the doctors might have known it was "THAT BAD" when they set up my transfer of doctors/appointments to the U of U, just a week prior, because they had set up back to back appointments for ultrasound first, then to genetic counselling, then to meet my new OBGYN.  If they hadn't realized it was so bad, we wouldn't have already had an appointment with genetic counselling ready to go.  It was a slam of bad news all in one day, and the genetic counselors are the ones who get to do the dirty work of delivering it all.  I don't know why anyone would want that as a career, honestly  They told us his condition was possibly lethal. They also told us that sometimes, families who have one baby with a UPJ obstruction have more--it is possibly a genetic condition.  The final ultrasound they did (when they decided to admit me and try to deliver to see if there was a possibility to save his life by draining his kidneys) his kidneys were huge, his bladder was empty and he had no amniotic fluid.  

Why did they take him at 28 weeks?  Babies can't develop without amniotic fluid, his lung growth had hit a point where it had completely halted, his kidneys were still producing urine that could not drain, and once there is no more fluid, the chances of the placenta just rupturing are much higher.  I was not in any danger, but he would most likely have died and been born stillborn.  As it was, because his kidneys were so large, his lungs were drastically underdeveloped (his kidneys were hogging all the room), even for a baby his age. 

Q: Were you (referring to me) in any danger?  Not that I was made aware of.  Everything we did was to save Gideon's life.  And as it was, I am glad they tried, because we had a week with him where we could see and touch him and make eye contact, and we wouldn't have gotten that week if they hadn't tried what they did when they did. 

Some people have wondered if we knew that his chances of surviving were so small.  No, not really.  We were pretty blindsided by the whole thing, it was a week full of shock after shock.  The doctors only told us when I was admitted before we delivered him that it was possible this could be fatal.  Up until then, we were optimistic that this would be a UPJ obstruction like the others we had heard about.  We hadn't chosen his name, we had NO idea I was going to be admitted and then delivering this baby when I went up to U of U that day.  We just knew we were going to be meeting with some specialists, and that they would take over my care for the duration of the pregnancy/delivery so that we'd be close to Primary Children's Hospital and specialty doctors.  We didn't know why they were having us meet with genetic counselors, (but if you are ever given an appointment with them--expect it to be NOT FUN.)  Up until then, we all hoped that once they drained his kidneys, they would not be too badly damaged, and that he would be able to keep growing and developing in the NICU as a semi normal baby, until he was old enough, strong enough, and stable enough to have a surgery to fix the UPJ obstruction.  We learned that most babies born at 28 weeks have a 90% chance of surviving and that 90% of those have no permanent damage.  That is 90% of NORMALLY developing babies, though.  Our baby had severely underdeveloped lungs as well as possible damage to his kidneys.  It did not look like his chances of surviving were anywhere near 90%, but we were still hopeful.  

Some people had heard of the steroid shots they give to mothers who are delivering a baby early, to give the baby's lungs a boost.  Did they give me the shots?  Yes.  After they admitted me on the 22nd, they gave me the steroid shots to help his lungs develop,  they are a 48 hour process--you get 1 in 1 hip that gets to stay there for 24 hours, and then another shot in the other side and it needs 24 hours to have its full effect.  They monitored him every few hours, to make sure he was still hanging in there.  At the suggestion of a dear friend, I took an audio recording of his heartbeat--which I still listen to and treasure.  They did not actually induce labor until the evening of the 24th, after the steroids had had a full 48 hours to do their thing.   

Did they try surgery?  Yes, but he was too tiny to have a normal UPJ type surgery where they open you up and connect the ureter to the renal pelvis/kidney/bladder, so they just drained his kidneys, and inserted nephrostomy tubes.  (Bypassing the need for a ureter/bladder completely, his kidneys drained straight into the tiny bags at his sides.)  We were hopeful, his lungs started expanding, he lived through the surgery to drain his kidneys and bypass them, even though he was so fragile.  Over the few following days, it was a "watch and see" type thing, and the results were not good.  His kidneys weren't really functioning, they weren't filtering the fluids in his blood effectively--the levels of "bad stuff" in his blood were going up every day, and his kidneys were filling back up, despite the drainage system that was in place.  His lungs were so tiny and fragile that they began to show signs of damage from being used.  They couldn't adjust the ventilator to balance his ability to keep oxygenated and also not damage his lungs that were so very small.  It just didn't look good, he was dying, really.

I have been asked if I miss him.  Yep.  This seems like a silly question--it is typically posed to me by young teens.  It has been asked as a sincere question, and I don't feel angry that it was asked.  Yes, I miss him.  Sometimes more than others.  

I have been asked if the condition is genetic.  That's unclear, but there is evidence to suggest that it might be.  No guarantees one way or the other, but there is an increased chance that we could have more kids with the same UPJ obstruction.  It was a difficult decision to proceed with more children, but we both felt strongly that we were still to have more.  Honestly, after I came home from the hospital after Gideon passed away, I wanted to get rid of all the baby stuff, because I never wanted to go through losing a child again.  Scott talked me out of it, knowing that I have a mother heart, and I have always wanted a big family.  I am glad he did, even though I am still scared that this baby could have problems.  My doctor will be watching closely.  I will likely be in bad shape if we ever see too much fluid in his/her kidneys, though I will try to be optimistic as I can.  

A good friend of mine asked me if it is still as hard now as it was right after he passed away.  I don't think it is as hard as often, but the times when it is hard are still just as hard as before.  I think it's maybe a little like adjusting to wearing a wedding ring.  At first, it's so obvious it's there--it's shiny, I kept scratching myself on it, it felt heavier than normal.  But after a while, I got used to it.  I still look down at my hand and love the way it looks, I still sometimes get scratched by it, but I am used to it's weight and have adjusted now.  The super difficult moments of missing him so badly I am almost thrust into tears don't happen quite so frequently as when he had just passed away.  I still think of him daily, but I don't always ache for him like I did at first.  We have gotten used to the "new normal" where we have a little bit of an empty spot in our hearts and in our home, and we are more used to it than at first when it was so very noticeable. 

Another good friend of mine asked me some questions about how to be a good friend to me.  Are there things my friends are doing now that they should stop?  No, not my friends.  I have a fantastic support network.  As a general rule though, people should stop is making judgement calls about other people's grief, but I don't feel like any of my friends have done this.  Grief is not on a timeline, and everyone deals with grief in different ways.  People need to be more understanding of this, to find ways to understand and support each other instead of thinking "well, that's weird" or "He/she should be over it by now."  I have not felt that any of my friends have done this, but it is a common thing in our world, and it really shouldn't be.

Is there anything my friends are not already doing that they should start doing?  This is a tricky one.  There's a part of me that would love people to still sometimes bring meals and/or help clean my house, but I think that's really more of my pregnant, tired self talking, not my Gideon missing self.  And I don't really think it's a need, so much as just a fun/nice thing to do and receive.   The real answer, and the honest to goodness truth is, if you feel prompted to do something, you should probably do it.  Not just for me, but for anyone.   Our grief goes up and down, there are harder days and easier ones.  People have been so wonderful to reach out to us, even after all these months, I still will have someone send me a card to let me know they are thinking of me, or bring me a treat, or just shoot me a quick message to tell me they love me and hope I am finding happiness in life.  People will squeeze my hand as they ask "How are you?" and I can tell it's a question they really want a true answer to, not just a "Hey how are ya?" that we ask in passing.   It's wonderful and awesome, and usually those things happen when I need them.  People are being sensitive to the direction of their hearts and the Holy Ghost, and following those promptings to be kind, and I love it.  I think ladies have a gift for that more than men, and I wish Scott could be a receiver as much as I have been.   Though, a good friend of his dropped by randomly one day in December with a loaf of banana bread and to let us know that their family was still praying for us, and I am pretty sure it meant a whole lot to him, and it meant a lot to me to have him let us know that even months later, they were still praying for our happiness, and that he came in person to let us know that he had our backs.

One of the best things a good friend can do is listen when I need, and also understand if I'm not wanting to talk about it.  My blog is a fabulous way for me to balance this, because I can open up when I need/want, and people can go read it if they want to, when they are ready.  I LOVE when my friends and family read my blog, it is a way for me to keep Gideon alive, to make his life have more meaning, to touch hearts that he never had the chance to meet personally.  His life was so short, and I remember wondering (when we knew he was dying) if a life that short could have enough meaning--what was the point of him coming into the world at all for just such a brief time?  All the doctor's efforts, all my efforts of being sick and eating healthy and going to the hospital and having shots, they felt like a waste when I first learned he was not going to make it.   I am pretty sure I even cried aloud "Was this all for nothing?" in a frustrated, upset, angry voice when the doctors first came in (20 minutes after Gideon had been taken to the NICU and they hadn't been able to get him stable yet, and weren't sure they would be able to.)  Through priesthood blessings and the Holy Ghost, I have a firm knowledge that his life, though short, had no less meaning.  I feel like our family needed this.  I don't know why.  I won't for a long time, but I know that God knows why, and I'll be grateful for his loving kindness and wisdom one day when I am able to see all he sees.

What makes you miss him?  Random things, but especially moments I wish I could share with him.  Reading with my kids when we are all snuggled on a couch.  Singing and dancing to songs in the family room.  Sunsets.  On the day I started this post, I was watching the snow fall outside and wondered how he would react to the touch of snowflakes on his skin.  I don't always know when those moments are going to pop up, and especially now that I am pregnant, they seem to be accompanied by quite a bit of emotion.  I wish I could see his face and hold him, I wish I could watch him learn and grow, I wish I could be watching him learn to reach out, and roll and crawl and take steps, as I watch my nieces and nephews doing.  

Why did you choose that name?  I think everybody gives their children names with special meaning.  His first name was not initially a name we considered for our son, but we had talked about Gideon in the bible in Sunday School, during the pregnancy, and I remember it sticking out to me as a really good warrior name.  I also looked up and found an awesome Gideon in the Book of Mormon, and they were both stalwart warriors of truth and righteousness, who loved their God and their people.  When we were made aware of the size of our baby's battle (on the day I was admitted to the hospital) we felt he needed a warrior name, whether his battles were to be here in this life, or whether he was to go home and serve God in heaven, we knew he was a strong spirit.  His middle name is after Scott's oldest brother, who came and talked with us at the hospital.  His first wife passed away from cancer a few years ago, and he gave us some marvelous perspective on doing what you can, but not beating ourselves up for not overdoing it, on accepting loss, on accepting our human weaknesses and not pushing ourselves beyond our capacity to handle.  His perspective was so timely, he knew he needed to be there that day, and we are grateful he followed the promptings to come and give us that support.  He was there for our family in a way that only someone who has lost a close loved one could be, and we both were so touched by his words, and his knowing that we needed them.  And he's an all around good guy too, with a great family.

Is it harder for me to deal with his loss because he was part of a group of babies born in the Chase family, and I get to see them all grow up?  Yes, in some ways it is.  In some ways, though, it connects me to him, I can see that he might be rolling, he might be eating solids, he might be taking his first steps, and though the reminders of his loss are painful, the reminder that he is part of our family is helpful.  I sometimes feel a little left out, but I know I will have time with him again, and they help me remember him.  So I like that my nieces and nephews remind me of him, I just wish it didn't hurt sometimes...

My least favorite question during the whole experience?  I'd say it's any INSINCERE question.  For example "How are you?" (when you really don't want to know) or "Is there anything I can do to help you?" (when you truly hope I'll say "No")  There were even a few "grief counselors" at the hospital who didn't seem very sincere, and they were more annoying than helpful during the time we were there.  In general, this whole experience has been one where I have come to appreciate sincerity.  I even appreciated friends telling me "I didn't know what to say to you, so I just haven't really said much to you for a while."  Or "There really aren't words for this, but I'm sorry."   Thanks for being honest.  I'd rather someone not ask than have someone ask me or tell me something without sincerity.

I don't really understand why people think the world of me.   Simply: I LOVE my family, and I love my friends, I love my Jesus, and I love that my faith has helped me through this and other hard times in my life.  I want to share that faith and the love I have felt because I hope it will help other people, and make Gideon's little life continue to have far reaching effects.  The miracle of his life has changed my life forever, and I am a better person because of it--if I can ripple that effect, can help 10 people be better and love deeper, and they can each help 10, and they can help 10, it will be like pay it forward, the ULTIMATE EDITION!!  I want to make the world a better place, and I know Gideon has helped me to love more deeply and appreciate the things of eternity in a way that I couldn't have before.  I feel like most of my friends have the same goals as I do, and are also incredibly amazing people: they want to make the world a better place, they love their friends and family and want to help them be their best.  I am blessed to have such a support system. 

If you took the time to read through this entire post--hats off to you!  Thanks for being a good friend and listening when I wanted to talk about it.