Saturday, April 19, 2014

Surgery

Things for Baby J's surgery really started last Friday afternoon when I got a call from the hospital to tell me what time his surgery was scheduled for and when he had to stop eating.  It really hit that this was really happening and there was an end in sight.

Monday:  4:00 am I woke up and fed Baby J his last meal.  Then Lawrence and I dragged ourselves out of bed, got ready and headed for the hospital.  We checked in at 7am and waited.  Baby J was fairly happy and smiley, and was patient, at least for a while.  We waited some more and waited some more while Baby J became more and more upset, and they finally called us back to finish checking in.  They weighed and measured Baby J then had us strip him and scrub him clean with some special wipes and put him in clean hospital jammies. And Baby J got really mad, he was starving!  Then we went to wait for the anesthesiologist to come get us.  And Baby J cried.  And we waited some more.  And they told us that it would be ten minutes, then a half hour, and another half hour.  Somewhere in there Baby J gave up and went to sleep.  His surgery got pushed back 2 hours because of an emergency.  Finally the anesthesiologist came and we signed some papers.  They took Baby J and told us to check in at the waiting room.  We checked in and my mom stayed and crocheted while Lawrence and I went for food, surgery was scheduled to take 4 hours.  After about 2 and a half hours we got a call from a nurse letting us know that everything was going well and they had about an hour left.  Surgery took just over 3 hours.  Then we went to recovery.  Baby J was crying and in pain.  They gave him medicine and settled him down before sending us upstairs to his room.  The rest of the day was just keeping him happy and giving him medicine for his pain.


Tuesday:  More pain management.  As long as he got medicine as scheduled life was good.  he was very sleepy and had a catheter so there weren't any diapers to change yet.

Wednesday:  Much like Tuesday.  We tried to cut back on his heavy pain meds and they gave him a different pain medicine to help.  We also tried to give him some Pedialyte.  He took some of it, but then screamed and had a lot of pain so we stopped.  At about 6pm I went out to pump some milk and when I came back the nurse informed me that we had poop!  I have never been so excited to see a poopy diaper!  He was still having a lot of pain, mostly from gas so we went back to the schedule for his heavy pain meds.  He continued to do his "duty" the rest of the night and slept well.

Thursday:  Since he pooped we were able to try feeding him more.  We gave Baby J some Pedialyte and he took it anxiously.  Later we tried some milk, which he also took very well... until he threw it up.  So we cut back.  We tried less milk, but he threw that up too.  This was discouraging since we were hoping to go home Friday.  They gave him some anti-nausea medicine and some zantac and he seemed better, but the doctors still said to hold off.

Friday:  He slept well Thursday night and his tummy seemed calmer.  I went and pumped for the morning since the doctors told us to start with the Pedialyte.  He refused the stuff and rooted for milk, so I nursed him.  He was the happiest baby in the world!  He ate for 20 minutes and was content.  They gave him more zantac and anti-nausea medicine and he kept it down.  After 2 hours he cried and acted hungry again, so I fed him more-- he was just so excited to be eating again.  But then there was more throwing up, lots of it.  So then there was a bath and fresh bedding and clothes.  At the tree hour mark I fed him again.  This time he seemed more cautious and didn't eat quite as quickly or as long and he kept it down!  This was a huge milestone for him to get to go home.  The rest of the day went well and he only had one other episode of throwing up.

Saturday:  Going home!  The surgery team stopped by and said that since he kept his feeds down for 12 hours and was taking his tylenol orally we could go home.  It was a long hour waiting for the discharge paperwork to come, but so exciting to go home.


Friday, April 11, 2014

Monday

This coming Monday is the day.  The day Baby J has his second surgery.  The day that will *hopefully* be the start of mont days to come with lots of messy diapers.  I have been doing my best to prepare myself for this day by talking with other HD parents, finding "recipes" for homemade diaper rash creams and wipes (apparently the diaper rash after pull-through is really bad), planning what to pack for myself, Baby J, and Mr. E (he will stay with Grandma and Grandpa), and trying not to think about how long my baby will be under anesthesia.

Lawrence will bless Baby J before surgery, with the help of my dad, maybe more.  And we will be praying for him to handle the surgery well and recover quickly.

Part of me feels that Monday can't come soon enough and another doesn't want it to come at all.  Wish us luck and wave goodbye to his stoma!


Monday, April 7, 2014

Comfort

We all have a little quirk that we use to help comfort us.  When I was young I had this orange, gingham, tied blanket that I liked because I could play with the ties to help me sleep-- I still find myself playing with ties on blankets to this day.  I'm sure you could pinpoint one or two things you do that are similar.

My kids are no different.  Ethne had to touch my rings.  She would hold my hands and find my wedding ring or the ring I wear on my right hand (sometimes both) and rub the diamond with her thumb.  I think it's how she knew it was me.  Mr. E plays with ties on blankets and with hair.  We often find him sleeping with his hands above his head, playing with his own hair, but mommy's hair is best.  It used to drive me crazy, he would wrap my hair around his fingers then pull, hard, to get them out and start over.  He doesn't do the wrap and pull thing anymore, but he still likes to play with my hair, he will often ask me to let a ponytail down so he can play with it.  For now Baby J likes to be swaddled or held tight, even in the NICU they had to use a "frog" (a weighted bag that they place on babies to make them feel like they're being held) to keep him happy at nights when we weren't there.  But there is one constant comforter for all my babies-- music, or really, one song in particular, "A Bushel and a Peck."

A while back I posted about how this song became a staple in our home.  Those memories of singing with Ethne, her wrapped tightly in may arms while she rubbed my rings are still among my favorites. Her sweet voice in unison with mine as we would sing "doodle, doodle, doodle..." is something I never want to forget.  After the accident it was often the only thing that would settle Mr. E down when he got upset and now it is the last song he wants to hear before he goes to sleep.  This song is the first thing I "said" to Baby J after he was born, I couldn't think of any better words to give him,  and now it is also a great comfort for him.  When I share this simple tune with my boys I like to think that their sister is with us, singing right along and helping to comfort all of us...



"doodle, doodle, doodle, doo..."


Monday, March 31, 2014

Paying it Forward

I love nursing.  I enjoy knowing that I am giving my baby the best I can and I enjoy the bonding time it gives me with my baby.  I nursed both Ethne and Mr. E (yes, even after the accident) for just over a year each.  Mr. E was more of a challenge to get to that year, but after the accident I pumped until I was cleared to nurse him again, and it was totally worth it to me.

While Baby J was in the NICU I pumped breast milk for him.  I spent about 20 minutes of every 3-ish hours with a pump trying to get as much milk as I could for the day they would allow my sweet boy to eat.  Primary's has a special pumping room and freezer just for this purpose.  I quickly discovered that I had a more than ample supply and was pumping more than many of the other moms, I kind of became famous.  When Baby J was finally allowed to eat I would freeze half the milk from a pumping session and give the nurse the rest for him.  He had to start off slowly so he wasn't using very much milk.  Then, a few days before discharge they asked me to stay with him so they could observe him nursing for 36 hours.  So when Baby J was discharged they sent me home with all my pumped milk, to add to the freezer-full I had at home from night pumpings.  I had all this milk and couldn't foresee myself using it before it would "expire" (frozen breast milk is good for 1 year).


I asked about donating milk to Primary's, but you have to do blood tests before the milk is pumped, so that wasn't going to work.  Then I thought about selling it (apparently there is a market for that on Craiglist).  But that didn't seem a right fit either, after all, the milk was free for me and the hospital provided the bottles I used to store it.  Then I found a Facebook page called Human Milk 4 Human Babies- Utah.  It is an exchange where women who pump more than they need offer their milk to other women who, for whatever reason, can't provide breast milk for their babies.  Many of the moms looking for milk have adopted, had mastectomies, lost their supply, or have gland disorders, but they still want to provide breast milk for their babies instead of formula.  This seemed right to me.  We have been so blessed through everything, why not help bless someone else?  So I posted that I had a bunch of milk and waited to hear from someone that needed it.

That mom just came and picked up most of my pumped milk.  She has a sweet baby girl that will benefit from that milk that otherwise would probably have gone to waste.  Now I have room in my freezer again and she has milk for her baby.  It felt really good to help someone else and pay it forward at least in a small way.

Tuesday, March 25, 2014

It's a Love-hate Thing


It often feels like people are perplexed about grief as an emotion.  Sometimes grief can be short-lived, especially when it is over something small or something that can be fixed.  But other times it is long lasting, it's not something that a person can just "get over."  What people seem to misunderstand about grief is that it is not an independent emotion.  Many emotions are felt just for themselves, we feel sad because we are upset over something, we feel love in spite of other feelings about someone of something (for example I love Mr. E even when I am angry with him), but grief seems to work a little differently.  People only tend to grieve over things they care about, over things they love.  I love Baby J and that is why I felt grief over his HD and the things he will have to endure because of it, parents of wayward children feel grief for the actions of their children because they love them.  If there is no other emotion tied to someone or something there is likely no grief.  That is why losing a child is so hard.  We grieve for their loss because we love them eternally and until they are no longer gone from our presence that grief will continue.  Grief is a love thing, and sometimes I kind of hate that it is.  




The other day I watched the new Disney movie "Frozen."  I was enjoying the cute story and the fun music when the snowman Olaf showed up.  "My name is Olaf and I like warm hugs!"  Olaf's song and antics brought a mix of emotions from me, tears and laughter.  You see, Olaf made me think of Ethne and how much she would have enjoyed this movie.  She was so much like Olaf, my cuddly little girl who loved to make people smile and loved to give hugs.  This time of year can be hard too, with all the frilly dresses for spring in stores, I wish I had a reason to buy them.


Sometimes I wish I could turn it off and enjoy things that seem to trigger my grief, like admiring girlie spring dresses and watching Princess movies.  But then I realize that not feeling this grief would be to not feel my love for Ethne and I don't want that at all.

Saturday, March 22, 2014

So Close and yet .............

Ethne had a way that she would snuggle with me when things weren't going her way. I call it my "Grandpa can fix anything for Ethne" snuggle. I will get back to this in a moment now.






Today, Lawrence texted me and said that he and Mr. E were going to go to Autorama and asked if we wanted to come. It is something that we share in common, a love of all things cars. So we had a boys day. Lawrence, Mr. E, Gabriel, Isaac and I went to the Autorama, (Josh had to work). So we spent a couple of hours then went to lunch (hot dogs at Wienerschnitzel, such a guy thing). Mr. E was Mr. E through and through. It was a fun day. There were some great restored classic cars. We all found our favorites.

Lawrence was scheduled to play his bass with the Oquirrh Symphony later this evening. We net Melissa and her boys there. As the concert began, Mr. E wanted to sit on Grandpa's lap. Never one to shy away from this time, I gladly sat him up. Part way through the first number he snuggled into me. Not his normal way of sitting with me, but in Ethne's way. It was very brief, and very real, and I was certain that it was her on my lap with her red hair nestled into me. It was a feeling that I had all but forgotten after two years. But it was her way of being part of the family this day after the time we had spent together with her parents and siblings today.

Thanks Princess for the reminder, and thanks Mr. E for being the messenger.

Scott




Thursday, March 20, 2014

Little Ethan

Today I want to share someone else's story.

Our superhero!

Two doors down from my parents lives a wonderful family of 8.  They have mom and dad with 5 boys and one girl.  Among these 5 boys is little Ethan.  Ethan is the same age as Ethne.  At 22-months old Ethan was diagnosed with Acute Lymphoblastic Leukemia (ALL).  Ethan was given a 3 year plan for chemo to treat this aggressive cancer.  Summer of 2012 Ethan's cancer went into remission.  Life was good, prayers were answered, and shortly before this boy #5 was added to the family.  Unfortunately the remission only lasted one year.  They tried chemo for 5 months with no luck, so Ethan was given an experimental drug to help him fight.  Fortunately the experimental drug worked after only 4 weeks, he was in remission again!  This time around they decided to to a bone marrow transplant.  Ethan's family was tested for compatibility and his younger brother was a match!  After countless blood tests, cranial radiation, and more chemo Ethan received his little brother's donated bone marrow.  This was in January this year.  After 16 days the transplant engrafted and was considered a success, Ethan was on his way home!

Through all of this his family has seen so many miracles, blessings, and answered prayers.  Ethan was granted a wish through the Make a Wish Foundation and he and his family went to Disney World, they added a healthy and happy baby to their family, VIP concert tickets to The Piano Guys were gifted to Ethan, the old swamp cooler in their home was replaced with central air, and so many other generous gifts were given.  They are truly grateful for the outpouring of generosity and love they have seen throughout all of this.

Early this week Ethan went in for a routine appointment and it was discovered that he had RSV.  He was admitted to the hospital for treatment.  But there was something else wrong in the blood tests.  The cancer is back.

When his mother shared this on Facebook my heart broke.  This wonderful family has been through so much and sweet little Ethan is such a fighter.

Today I ask for prayers for Ethan and his family.  Prayers that doctors will know how to help bring Ethan back into remission, prayers that Ethan will not get too sick through this new course of treatment and that he will have the strength to endure it, prayers that his family will have the strength they need to endure this again.

If you want to know more about Ethan's story you can find it here.

Sunday, March 16, 2014

Blessing Baby J

In the LDS church (and many other religions) we give babies a name and a blessing, often within the first few months of life.

With all of the goings on with Baby J figuring out when/where to have his blessing was a bit of a challenge.  We haven't wanted to take Baby J out much to keep him healthy before his next surgery, so we decided early on that we would try to bless him at home, it was just a matter of getting it approved by our Bishop.  The problem with that was that Lawrence is sometimes forgetful and kept forgetting to ask the bishop if it would be alright, until about two weeks before the planned blessing date.  Then he forgot to fill out the paper for the blessing until the week before.

Then there was figuring out a date.  We wanted to include family that wanted to be there and of course both our parents.  There was a small conflict with a baptism the day before, but it all worked out for March 9, most everyone we wanted to have there was able to come and many others were there in spirit.





I decided to make his outfit.  Mr. E wore Lawrence's blessing outfit and it barely fit, so I knew Baby J wouldn't be able to squeeze into it, plus I want each of my children to have their own blessing outfits for the future.

Family drove for hours just to share this special day with us, a special day that, at one point, I was afraid might not happen.  It was so good to have each and every person there with us.  Lawrence gave a beautiful blessing that told of future missions, faith, and strength.

I am so thankful for this strong, beautiful boy we have been blessed with.  I am also incredibly grateful for my husband and the priesthood he holds, that he was able to administer this blessing to Baby J.  I honestly feel inadequate as his mother, hearing that he has specific missions to fulfill.  I hope that I can raise him to be the man the Lord needs him to be so he can fulfill those missions.


Monday, March 10, 2014

NICU

Congratulations!  You (or your wife) just had a baby!  But there are complications…  baby came early, or baby isn't breathing well, or baby aspirated meconium, or baby isn't pooping, or baby is severely jaundiced.  Your baby is going to the NICU (neonatal intensive care unit).  Suddenly your baby is taken away from you, stuck with an iv, and placed in a plastic crib.  You follow in a daze a nurses wheel your precious newborn through locked doors and into a dark room where they place monitor probes to his chest, tummy, and hands.  A doctor introduces herself but you instantly forget her name.  The nurse placing probes also introduces herself then ushers you out to the receptionist who hands you a clipboard and asks you to fill out the paperwork on it.  Before showing you to a waiting room the same receptionist explains the rules 1) to get through the locked doors you pick up the phone on the outside and tell them you are there to visit your baby 2) you must clean under your fingernails and thoroughly wash your hands and arms up to your elbows, dry, and apply sanitizer before seeing baby 3) only two visitors are allowed to be at your baby's bedside at any time 4) if you are sick, stay away 5) no one under 14 is allowed past the locked doors.

You finally sit down, still in a daze and fill out the paperwork.  After all the insurance information and family history is complete you approach the locked doors, pick up the phone and ask to see your baby.  The doors open, you hand the paperwork to the receptionist, then set about the task of scrubbing in.  Finally, you are able to see your precious bundle of joy.  You enter the dim room and notice, for the first time, the monitors at every bed, the tubes, the pumps, and the pervasive quiet that is interrupted only by the beeping of monitors.  The nurse who introduced herself earlier smiles at you and meets you at your baby's bedside.  You tentatively reach out to touch your baby while the nurse starts telling you about the plan for your child.  They are giving him antibiotics to prevent infection and keeping track of everything he takes in and puts out.  Your baby has wires and tubes stuck to him that connect to the monitors and other gadgets that are helping him with whatever he may need.  This is when it really hits you, your baby, your perfect baby that you have been waiting for, is sick.  The nurse has long since stopped talking and is watching you come to this realization, something she has seen more than once.  She ushers you to a chair and (depending on your baby's condition) helps you hold your baby (or your baby's hand).

Welcome to the NICU.  We spent 2 weeks in this foreign place that few visit, and never by choice.  The rooms are kept dim and quiet to promote healing and the nurses are angels sent from heaven.  When a baby visits the NICU it is because they are too sick for a regular pediatrician to handle, they may need surgery or help breathing, they may have been born too early or have a spinal cord defect, whatever their problem, they are in good hands.  Nurses in the NICU are a special breed of human being, able to deal with the chaos of sick babies who can't help themselves in any way and can't push a button to let them know when they need something.  These amazing nurses see tragedy and happiness in their rawest forms as they work with babies who far too often leave this mortal existence far too soon and with those who overcome their struggles and leave happy and healthy.  They cry with parents as they watch their precious blessings endure more than many adults do and celebrate the little things (and big things) on the road to recovery.  NICU nurses deserve special respect and admiration.

But it's not just the nurses that deserve accolades.  The parents who stand by their babies day and night as they battle whatever it is that has put them there are special too.  Mothers, who are recovering from childbirth and often c-sections sit and watch and wait for the opportunity to hold their baby, often for the first time after days or weeks of treatment and who pump breast milk to nourish these little blessings, deserve extra love.  Fathers who spend their free time standing watch over their new bundle and go to work or to tend other children are also deserving of special praise.  These parents spend hours and hours worrying over their babies, learning medical jargon, researching treatment, and praying that their baby will be safe and come home healthy.







With all this in mind I want to extend a special thank you to our nurses.  We had fantastic nurses every day and night.  They were always there for us to answer any questions and to encourage us.  They were positive about everything that was happening, but still honest.  They encouraged us to make sure we were taking care of ourselves as well, so that we could continue to care for Baby J.  They alerted us to changes in his care and were always so patient with us.  Thank you to our wonderful nurses, for all you did for us.

I can't forget the friends we made while in the NICU, the other parents that were in the same (or at least similar) boat as we were.  They also had sick babies to care for, but they were also there for us.  We cheered together whenever one of our kiddos made good progress and we sorrowed when there was a setback.  We chatted to help pass the endless hours of quiet and admired each others' babies.  We have kept in touch with some of the other parents and are hoping they are life-long friends.  We still share in each others' joy and progress with our little ones, it is a friendship born of trial that only other NICU parents can truly understand.  Thank you to these other parents for making the NICU a slightly more friendly place.

Find more insight into the NICU here and here




.

Friday, February 28, 2014

Let me Clarify

It has come to my attention that some of our readers are not clear on exactly what is going on with Baby J, so let me clarify a little…  Disclaimer:  There are pictures and medical type jargon used in this post.  I tried to keep it as simple as possible on the medical stuff.  If you are extremely squeamish, you may want to skip the pictures.

When a baby is developing in its mother's womb some of the first pieces to develop are the baby's internal organs and the nerves that run those organs.  When the nervous system develops it starts at the top with the brain, then works its way down the spinal cord and into the other parts of the body, always from the top down.  For babies with Hirschprung's disease, like baby J, for some unknown reason the nerves in their intestines stop developing early, so they never reach the bottom.  When this happens there are no nerves to tell the muscles in part (and sometimes all) of the child's colon, large intestine, to move digested food and gas down and eventually out.  This means stuff gets stuck inside the baby's colon from the point where the nerves stop and just builds up, never coming out.  If this isn't caught early enough the baby's belly can become distended and fat and can cause infection and even rupture if it is bad enough.  The only known way to fix this problem is with surgery.



stoma

There are two ways doctors perform this repair.  One is a direct pull through or take down, the other is a two step process with an ostomy and then a take down.  Now I will define some terms:  Ostomy: when a piece of intestine is pulled through the wall of the abdomen to allow stool to pass through, this is collected in a bag that attaches over the stoma.  There are two basic types of ostomies, colostomy, where part of the colon that is pulled out, and ileostomy, where the small intestine is pulled out.  Stoma:  The piece of intestine that sticks out of the abdominal wall.  Pull through: a surgery done to reconnect intestine to the anus, called a pull-through because the intestine is literally pulled through the pelvic floor muscles to be reattached.








colostomy bag

Baby J is having the two part surgery.  The reason for the two part surgery is to allow the healthy part if his intestines rest and return to a normal size before they are reattached (they were bloated with stool and gas before his first surgery) and to allow him to gain some weight.  January 3 Baby J went in for his first surgery.  For this surgery they used a laproscopic camera and took tissue samples from his colon every few centimeters until they found healthy nerve cells.  Once they found healthy nerve cells they created an ostomy on the lower left side of his abdomen.  In a few months he will go back for his pull through surgery during which they will reattach everything and close his ostomy.  After this second surgery Baby J should be able to function fairly normally.  For now we live with the ostomy, which really isn't all that bad.








I hope this clears up any confusion.  If you have questions feel free to ask and I will do my best to answer.

Sunday, February 23, 2014

Pieces of Ethne



The last few days I have really been missing Ethne.  I look at Mr. E every day and see so much of her in him that sometimes it hurts.  He is so sweet and at the same time such a stinker at the same time.  He has so much hair and so much personality to go with it.  Daily I wonder what Ethne would be like, how much hair she would have, the toys she would be interested in, the clothes she would pick out, the sound of her voice, the pictures she would draw.  And I can't help but wonder how much of what Mr. E does are things she would have done at his age.  But then I stop myself because if I think about it too long I cry.

When an older person passes they leave stuff behind.  Clothes, journals, pictures, furniture, heirlooms, houses, cars, the list could go on and on, but the stuff they leave behind often creates a legacy.  When a child dies often they don't leave that much stuff behind.  Children don't journal, they don't drive, they don't buy houses.  They leave behind physical reminders such as clothing and toys and they leave memories.

Ethne's puppy
About a year ago I posted about moving from the apartment that Ethne helped us choose.  I felt like we were leaving parts of her behind.  I was afraid that our new home wouldn't have the pieces of her that our apartment did.  But we brought pieces of Ethne with us.  We have the cedar chest made by loving hands and filled with her clothing and toys.  We have her elephant, her stuffed puppy, molds of her hands, and a lock of her hair.  We have pictures to hang on the walls.  We have Mr. E and his red hair.  But more than that we carry pieces of her in our hearts.

We remember her goofy run and her mischievous grin.  We still love her as we did before.  And we cherish the pieces of Ethne that she left behind.  She may not have left much, but she did still leave us a legacy.


Sunday, February 16, 2014

Our *current* new normal

Whenever there is a big change in family or just life in general we often have to find a new normal.  Humans are creatures of habit and something like a new baby throws all these habits and patterns out the window.  Even when a new baby is completely "normal" and healthy life gets turned on its head.  Having done this whole new baby thing before I was feeling fairly well prepared for this upheaval.  I figured there would be some jealousy and acting out on the part of Mr. E, I knew I would be tired and emotional, I counted on the increase in laundry, and the mess in my house.  But I didn't count on becoming a nurse of sorts.

I had planned for messy diapers, even blowouts, and spit up (I stocked up on oxy-clean products and laundry soap)-- but I didn't plan for something more on the opposite end of the spectrum.  I didn't plan on a colostomy and having to learn to clean and change the bags for this.  I wasn't prepared for the extra time it would take to empty the bag at diaper changings and then cleaning and replacing the bag every couple days.  I wasn't prepared for the crying and distress it would cause Baby J as we hold him down and clean and change his ostomy.

But now we have a new normal.  I feel I have mastered the diaper changes and emptying of the bag.  I have figured out how to dress him without pulling on it too much.  I have mastered the art of sponge bathing.  And I can now say I can successfully clean and change a colostomy bag that will stay on for at least 48 hours with and without help.  Mr. E has come to accept that Baby J is here to stay and has started to try to help by getting binkis, throwing away diapers, and trying to sooth Baby J when he cries.  I have found a way to make sure that Mr. E gets one-on-one time that is all about him while Baby J sleeps.  Mr. E is back on his old schedule (mostly) and Baby J is finding his own groove too.  So I guess you could say that we have found a new normal, at least for now.

Thursday, February 6, 2014

2 Years

I have been contemplating for almost a month what I have been wanting to say in my next post.  Today marks the 2-year anniversary of Ethne's passing and I feel it is time that I make a post.  I still think of her all of the time.  I may even be a little crazy, but sometimes when I am driving by myself I have conversations with her.  I'll say something to her and a response from her fills my mind.  For all I know I am just imagining it, but I don't plan on ever stopping because it helps me feel close to her.  Through these "conversations" I feel like I have gained a lot of insight on what she goes through as a spirit, I feel a better understanding of the spirit world, and I think I recognize a stronger connection to how what goes on here helps prepare us to work there.

These things might not ever take the pain away entirely, but they sure help to ease it a little.  I think it may be because I am keeping open a way to communicate and a connection with her that would be devastating to loose.  This communication has helped me with my ability to communicate with my Heavenly Father as well.  When I need help and guidance anymore I find myself more willing to listen and feel responses.  I am recognizing more about how he can communicate with me is so much more simple than I have to believe it is.  He can fill my mind with answers and I should not mistake those for random thoughts, but as inspiration.

Now on to an experience that we have had.  Melissa talked about our experiences with Baby J and I wanted to share a part of my experience while he was in the hospital.

As he was having complications and concerns were starting to arise, the most common comment it seemed like I would hear is, "Hasn't your family been through enough?  You shouldn't have to go through something like this after what has happened."  I certainly cannot disagree with these people, but for whatever reason the Lord felt that we needed another trial like this to help us grow.  Looking back we were made aware of things we would have never know about with Primary Children's (PCMC).  We also were allowed to meet and even serve new friends who were also suffering.  Melissa gifted some bracelets and tie tacks to some of the other families that had struggling children.  We were so blessed while we were there, but it was so hard to see at the beginning.

A few days after arriving at PCMC I remember thinking, "according to the scriptures and the prophets, Heavenly Father is aware of us, but why does he seem to ignore us."  Feeling that I'm sure anyone would say I could be justified in having, but left me feeling ashamed because I just didn't want to believe I was forgotten.  While struggling through this I felt like Tevye from Fiddler on the Roof when he said, "Sometimes I think, when it gets too quiet up there, You say to Yourself, "What kind of mischief can I play on My friend Tevye?"

Feeling low, I held our new little boy in solitude and offered a prayer asking the Lord for help in knowing he was aware of me.  I was looking for some tender mercies, I even offered a couple of suggestions of things that were important to me that would help me to feel comforted.  Moments later I decided that the scriptures are always a good place to go for comfort.  Having felt beaten down and over-burdened, I decided to pull out my Ipod and read from where I was at.  At that time I was reading the Book of Mormon in 3 Nephi 22.  Here are some of the verses that woke me up and touched me the most:

 For a small moment have I forsaken thee, but with great mercies will I gather thee.
 In a little wrath I hid my face from thee for a moment, but with everlasting kindness will I have mercy on thee, saith the Lord thy Redeemer.

 10 For the mountains shall depart and the hills be removed, but my kindness shall not depart from thee, neither shall the covenant of my peace be removed, saith the Lord that hath mercy on thee.
 11 O thou afflicted, tossed with tempest, and not comforted! Behold, I will lay thy stones with fair colors, and lay thy foundations with sapphires.

 13 And all thy children shall be taught of the Lord; and great shall be the peace of thy children.
 14 In righteousness shalt thou be established; thou shalt be far from oppression for thou shalt not fear, and from terror for it shall not come near thee.

I have never read those words and felt the power of the like I did that day.  These words just became the first of so many tender mercies that come, even before the day was over.  Many of which were other words that were spoken and given to me.  

These things that we have had to grow through as a family have been difficult and trying.  Experiences I would not wish anyone to have to go through, and at the same time I cannot deny how many good things have happened to us as a result of these trials.  We have experienced a lot of sadness, but we have also grown in strength and testimony that otherwise would be almost unimaginable.  The chapters that proceed 3 Nephi 22 quote Malachi and the refiners fire.  I know that we are definitely going through that fire, I just hope when everything is said and done we will truly reflect his image.

On a side note, thank you again to everyone who has reached out and touched us in one way or another.  Thank you again for your thoughts, prayers, and concerns.  I am still amazed at how much love can be felt by a family as insignificant as ours.

-Lawrence

Anniversary(s)

Ethne eating her 1st birthday cake.
Our lives are riddled with anniversaries.  Some we celebrate, others we ignore, and some we may try to ignore and fail.  We even name some of these anniversaries to signify the event they mark.  Birthdays, marriages, holidays, and of course deaths mark many anniversaries.  When the event is happy we celebrate, often with gifts and food.  When the event is benign it will often go ignored and when the event is unhappy we either ignore it or fail miserably to do so.

I have seen a few loved ones pass on to the next life.  For the most part I ignore the anniversaries of their passing.  It is easier to ignore these sad days than to live with the reminder that they are no longer with us.  The same often goes for the birthdays of those already gone.  If we ignore these anniversaries we can forget the sorrow of their passing and remember more the joy of their lives, we can forget how long we have been missing them and better remember the time we did have.

Ethne's 2nd birthday cake.
But there is one anniversary of a passing that I fail miserably at ignoring.  I push it out of my mind as much as possible, I hope that maybe time will stop and it won't come, but no matter what I do the Earth continues on its relentless course and it does come.  Then I am reminded of how long she has been gone, reminded of how I miss her, and reminded of what little time we had together on this earth.  We do our best on her birthday to remind ourselves of the eternity we will have after this life by attending the temple and remembering her short life, but on this day it is difficult to think of eternity when it seems only a speck so far off in the distance.

They often say that the first year is the hardest, when you experience the first birthday, Christmas, Halloween, anniversary, etc. without them.  And I think that I mostly agree.  The firsts of these many anniversaries without Ethne were extremely difficult.  But I think this coming year may be close in difficulty since we will mark more time without her than with and Mr. E will celebrate more birthdays than she did and start many new experiences that Ethne never had.  And then again, this year also marks one year closer to that speck on the horizon that means I will see Ethne again and never have to let her go.

Sunday, February 2, 2014

And so it goes (again)



I distinctly remember sitting in my educational psychology class in college when we talked about the Kubler-Ross stages of grief and how parents would often experience this when learning their child may be exceptional (disabled, smarter than average, below average, etc).  I also distinctly remember thinking that, if I ever had a child with a disability of any sort that I would love that child and that this whole grief process thing wouldn't really apply to me.  And, while I was right on one of those two counts, I was wrong on the other.

I love Baby J.  More than I thought possible.  Despite the difficulties I had physically and emotionally with his pregnancy I love him beyond words.  But this love did not stop me from experiencing a small amount of grief over his condition.

When a woman is pregnant she hopes and prays that nothing will go wrong, that the baby growing inside her will develop as he or she should-- grow all their limbs, nerves, bones, organs, etc. and be born without any problems.  More often than not this is the case, thousands of babies are born completely healthy and "normal" every day.  But sometimes genetics get in the way, or something in the environment causes a problem, and sometimes they just can't explain why, but sometimes babies are born not quite as perfect as his or her parents had hoped and prayed they would.  When this happens there is grief.  Sometimes it is minor, the parent(s) run quickly through all the stages without even realizing it is happening, other times it is more dramatic with lots of tears and heartache and sometimes the parents decide that (while they love their child) they can't handle the difficulties that come with a not so perfect child and they place the baby for adoption or choose some other option.

For me it was more of the former.  My perfect baby was placed on my chest after delivery.  He cried, he scored high on his APGAR tests, he measured well, all his limbs were there, ten fingers, ten toes, and everything seemed to be functioning properly.  Then we waited for certain things to happen that never did.  I started to suspect that something was wrong when he started spitting up green and stopped eating as well.  And I kept telling the nurses it wasn't right, but they all reassured me that it was okay.  But things kept not happening so they finally ordered the first x-ray.  As I waited for the results I prayed and hoped that nothing was wrong, that they would say everything looked good and send us home.  That was the first sign of denial.  Then we were sent to Primary's and we kept saying that maybe the barium enema would clean things right out and we would go home-- more denial.  Then they did the biopsy and we still were in some denial that our perfect baby may have a problem.

Then there was the guilt.  It didn't help that nurses and doctors kept asking questions about my pregnancy and my past pregnancies.  If I had good prenatal care, if I had smoked, if I drank, if I used any drugs, if I took my vitamins... over and over they asked these questions.  This got me to thinking, what if I had taken my vitamins more regularly, what if I hadn't taken that tylenol 3 to help with the pelvic pain, what if I had or hadn't done this or that.  I felt guilty that my body didn't do something it was supposed to.  And that made me angry with myself and the doctors and nurses for making me feel this way and suggesting that it could have been my fault.  I cried over my "perfect" boy being not so perfect.  I cried that I didn't get to take him home with me, I cried over the pain he would have to endure-- there's the depression.  But as soon as we had a diagnosis and a plan of action, as soon as I was able to speak with his very competent surgeon, and as soon as I was able to say a quick prayer in my heart and Baby J and myself were given blessings, I received comfort and was able to accept that surgery was the best way to help my baby and that this was the way my baby was meant to be.

My grief over Ethne's passing has been a long process, but my grief over Baby J's condition was very short-lived.  Grief happens in different ways for every person and situation.  Sometimes we know that it is happening and others it may happen so quickly and subtly that we don't even realize it.  I am grateful for the understanding of grief I have come to over the last couple years.  I am also grateful for the comfort I received through prayer and blessings, both to myself and to Baby J.

Tuesday, January 21, 2014

Tender

Sometimes it is hard to count tender mercies and blessings when faced with a trial.  But while Baby J was in the NICU I found myself counting these to find some comfort.  I'd like to share a few with you.

It really was a blessing that my parents live close enough that they could take care of Mr. E for us while I delivered Baby J and while we spent time in the NICU with him.  I can't thank them enough for everything they did for us with Mr. E.

We have lived in our ward for not even a year and they have reached out to help us so much.  They have brought us dinners, helped me clean, and brought gifts for Baby J.  They have even offered to help with Mr. E.




http://www.valerybunnellphotography.com/
A dear friend came to the hospital (before the NICU) and took pictures of Baby J for me.  She did a beautiful job and I am so thankful for her and the time she took for me, these sweet pictures mean so much.

Priesthood blessings from Lawrence, my father, and my brother came at the times we needed them.  Baby J was the recipient of multiple blessings as were Lawrence and I.  Blessings of healing and comfort are some of the biggest tender mercies.

An ample milk supply.  This may seem like more information that you may want, but it has been such a blessing that I have not had to struggle with this.  While Baby J was in the NICU he was not allowed to eat (until after his surgery) so I pumped and froze milk, and now that he is able to eat I am able to give him the best food for him.

That we are close enough to Primary Children's that we were able to spend as much time as we could with Baby J and still be able to see Mr. E each night as well.  Not to mention to excellent doctors, nurses, and surgeons that were able to help our sweet boy and be with him when we couldn't.

Friends that we made while Baby J was in the NICU.  The rooms in the NICU have 5 beds in them and our room was full.  Of the 5 babies in the room we were able to make friends with 3.  They helped lift our spirits and fill the hours of waiting with conversation.  It was wonderful to have others to talk to who were experiencing many of the same things we were.  It was also a blessing for me to be able to share bracelet sets with them.

Despite this experience being very trying, we experienced many blessings and these are just a few.  Counting blessings and tender mercies brought comfort during this trial.

Sunday, January 12, 2014

Our HD baby

After my shortest labor and easiest delivery Lawrence and I sat in the hospital adoring our newest addition.  He had the same red hair as his older siblings, and outweighed them both by over a pound.  He was also very mild and took right to nursing.  Doctors and nurses came in and out to do their jobs and make sure I was recovering properly and that our little man was doing the things he was supposed to.

Our wonderful pediatrician stopped by on Friday to have a look at baby J and to ask some questions about him.  This was a little later in the day and she asked the inevitable questions about wet and messy diapers.  When we told her he had yet to have a messy diaper she nodded and told me that we could not be discharged until he had pooped, just something they have to watch for.  Dr. N was off on Saturday, but left us in the capable hands of Dr. B (another pediatrician) who, after Baby J was 48 hours old and still had not had a messy diaper, ordered an x-ray of his tummy to see what the problem was.  What we saw was distended bowel loops full of gas that wasn't escaping.  So it was up to Primary Children's for us.

A transport team arrived and stuck my new baby what seemed like 100 times trying to get an IV into him, then we were off.  I rode in the ambulance, Lawrence drove.  Up in the NICU we met more doctors and nurses and were given a vague plan of action.  Before we had even been there an hour they were taking Baby J for a test called a barium enema, where they inject barium contrast into his bowels and then x-ray to try and see what the problem might be.  The hope was that this would just clean him out and he would start doing what normal babies do on his own, but this was not to be.  Lawrence accompanied him for this test and I was forced to eat.

When the enema didn't get things moving and the x-ray was somewhat inconclusive another test was ordered.  They came a few days later and took biopsies of cells in his lower intestines to look for specific nerve cells that make his colon and bowels do their job.  After two agonizing days the results came back negative for the cells, our baby was officially diagnosed with Hirschprung's Disease.

According to wikipedia:  "Hirschsprung's disease (HD) is a disorder of the abdomen that occurs when part or all of the large intestine or antecedent parts of the gastrointestinal tract have no nerves and therefore cannot function."  This occurs in about 1 in 5,000 babies born every year and is treatable, with surgery.

So the next day, at a week old, Baby J went in for surgery.  The way the surgery works is this: they go in laproscopically (with a camera and tiny knife) and take a biopsy of cells in his intestine every few centimeters then send them for testing for the nerve cells, moving up until they find the cells.  Once they find the nerve cells they make a hole in the side of Baby J's tummy and pulled a little bit of his colon out into what is called a colostomy so that he can do his duty (it empties into a bag).  In a few months, when he is a little bigger, they will perform another surgery where they will remove the non-functioning part of his colon and pull down the functioning part to attach it so he will be "normal."  People who have these surgeries often suffer no lingering effects from this disease and go on to live normal lives.

We spent another week in the NICU recovering from the surgery, relearning how to eat, and trying to gain weight.  Then we came home, on Baby J's 2 week birthday.


Thursday, January 9, 2014

Follow Up

Sorry that we have not made a post the last couple of weeks.  With everything going on we have been a little preoccupied.  Just wanted to give everyone an update that our new little boy was released from PCMC this afternoon and we are so delighted to have him home with us finally.  Melissa is planning on creating a post in the next couple of days on what happened, but I will let you know that the problem ended up being something called Hirschprungs Disease and is was causing some digestion problems.  He will require another surgery in the future, but today he is happy and healthy--not to mention, a very mild mannered little boy.

Photo: All my boys!

Wednesday, January 1, 2014

Baby J

As many have read, we have a new addition to our family.  We will call him Baby J.  He made his grand entrance as a late, but very welcome gift on Dec. 26.  He entered this world at a whopping 9 lbs 8 oz and was 21 in. long.  He is a very mild mannered baby and shares his siblings' red hair.  Unfortunately genetics struck and there have been complications.  Without getting into too much detail, he wasn't performing certain normal baby functions and his pediatrician wouldn't let us leave the hospital until he did.  When he never did we were sent to Primary Children's to figure out the problem.  After a very long weekend we have a diagnosis and a plan of action.

Tomorrow, our precious baby will be having surgery that will allow him to perform his baby duties.  Any thoughts and prayers you can send our way are greatly appreciated.  Please also remember his doctors as they will need guidance while performing his surgery.  Thank you all for your love and support.


Saturday, December 28, 2013

Baby Boy Stone

Hi this is Melissa's mother.  A while ago Melissa posted she was pregnant and due at the end of the year.  She gave birth to their family's newest addition on Thursday.  He weighed 9 pounds 8 ounces and is 21 inches.  However, there are complications.  At this time he has been taken to the NICU at Primary Children's Medical Center.  I am sorry for being vague but at this point don't feel it is my place to explain all that is going on but I would ask for your good wishes and prayers that the doctors will be able to diagnose and fix the problems and he will be home soon with his Mommy, Daddy, and big brother.

Thank you