Wednesday, October 28, 2015

Our Best News Yet...

Eddie had his 6 month MRI and eye exam on September 25th and everything looked great! The tumors in both eyes are stable, no change. Next eye exam/MRI in March.

Mary Elizabeth had 2 eye exams and both appeared normal but more importantly we received her genetic test results back last week and she does NOT show the same gene mutation that her brother has that causes retinoblastoma. What. a. huge. relief.  No more eye exams for her.

There are many more details and I would write more but I am typing with one hand! Life with 2 is constantly busy but we are doing well. Mary Elizabeth is 2 months old and over 8 lbs now.  Eddie is loving his baby sister, especially when she farts or burps, which honestly happens all day long.

We are blessed to have Eddie's retinoblastoma under control and we are blessed to hear that his sister won't have to go through what he had to go through.  We were prepared for and expected a 2nd NICU baby but we were not prepared to have another cancer baby.  We were saddened to hear of another little boy who lost his life to retinoblastoma at St. Jude's this past week.  So as we share our great news, we also share our condolences to the Helms family.

Monday, September 7, 2015

Mary Elizabeth Corinne Johnson

After a lot of convincing from my husband, a leap of faith, a cerclage at 13 weeks, bi-weekly OB appointments, 20 weekly progesterone shots, 6 ultrasounds, and a summer full of excitement, trepidation, and many, many prayers, she is here!

Michael and I welcomed this sweet girl on Monday morning, August 24th,  at 10:38 am.  She weighed 4 lbs 8 oz and was 17 inches long (a new record in our family)!  Tears of joy and relief were shared between Michael and I as we heard, for the first time, sweet newborn baby cries.  Mary Elizabeth is named after our two amazing grandmothers.  We couldn't just call her Mary and we couldn't just call her Elizabeth, so together for one very long first name, we have Mary Elizabeth.  It's a lot of letters and syllables, but we love it!

Mary Elizabeth initially did very well with great APGAR scores out of the gate.  However, her breathing was a little labored and she had a fair amount of secretions in her upper airway.  Upon closer assessment by the newborn nursery staff, her oxygen saturations were lower than they should have been.  None of this was all that unexpected given that she went a few weeks early and was so small.  My c-section was scheduled this time and I was 36 weeks 2 days along.  Because of the type of c-section I had with Eddie (a classical c-section) the OB did not want me to go any longer for fear of the old scar rupturing and causing a terribly dangerous situation for both me and the baby.  We were hoping she might be able to swing it in the outside world, but we were not at all surprised when they eventually decided to send her to the NICU for respiratory support.  

She spent the first 2-3 days getting oxygen via nasal cannula to help her breathe.  Given her (mild) respiratory distress and prematurity, she was initially unable to feed by mouth, necessitating the start of intravenous fluids.  This allowed the NICU team to give her some form of nutrition and keep her blood sugar up.  However, IV fluids unfortunately require starting an IV which is no small task in such a small baby!  They also put a tube from her mouth into the stomach to eventually start oral feeds.

Over her first 72 hours, they were able to wean both the oxygen and the IV fluids.  They also converted her orogastric tube (mouth to stomach) to a nasogastric tube (nose to stomach), which is more comfortable and allows her to take a bottle a little better.  We then were working to transition her from taking feeds every three hours from the NG tube to taking the feeds by mouth.  Eating by mouth - a skill seemingly so simple and so fundamental - is thrown off even by a few weeks of prematurity and compounded by any element of respiratory failure.  The next step was to completely transition her from NG feeds to oral feeds.  This process is capricious, as we already knew with our previous experience with Edward in the NICU.  We didn't know if it would take 3 days for her to catch on and learn how to suck, swallow, and breathe simultaneously, or 3 more weeks.   After a consult and a lesson front the NICU speech pathologist, we were reminded of how to feed her in the side lying position and how to pace her as she breathes during a bottle.

Last week Dr. Marcotty, one of Eddie's eye doctors here in Cleveland stopped by the NICU to examine Mary Elizabeth's eyes.  Her eye exam was normal and did not show any evidence of retinoblastoma at this time!  Mike and I, again shared some tears of joy and relief, as Dr. Marcotty gave us his report and asked me to sit down because he didn't want me to pass out.  We have been anxiously awaiting that initial eye exam.  Dr. Singh, Eddie's ocular oncologist, will check her eyes again in two months.  In the meantime we will soon have an appointment with genetics to have her blood tested for the RB mutation.  We are hoping she will not show the same gene mutation and we can cancel future eye exams.

After 10 days in the NICU we were given the go ahead to take her home!  After losing a few ounces and slowly gaining it back, we welcomed her home Thursday at 4 lbs 6 oz.  We took her for her first weight check and she is now 4 lbs 11 ounces!  She is a teeny tiny little thing and is as cute as a button! Our first night as a family of four under one roof was, uh, well, not exactly full of sleep.  Except for Eddie, that is!  He slept all night a mist Mary Elizabeth's cries, diaper changes, outfit changes, and feedings!  Someone loves to be up all night and sleep all day.  But we are thrilled and so proud of Eddie during this time.  After all of his feet stomping, arm crossing, "I don't want any babies in this house" talk, he has absolutely taken to her and loves her to death.  He painted her a picture that we hung in the NICU and when he was first allowed to go to the hospital to see her he ran down the hallway of the NICU saying, "I gotta see THAT baby!"  This is definitely an adjustment period for all of us, and I know it will come with ups and downs with Eddie, but as of right now, he has pleasantly surprised us all.


Wednesday, July 22, 2015

Team Eddie Spaghetti

Eddie did a great job kickstarting the 23rd annual Walk-For-Wishes at the Cleveland Zoo.  This past Saturday we were surrounded by family and friends to complete the 1 mile walk as team "Eddie Spaghetti."  We surpassed our fundraising goal and were able to raise $3,775 so that other kids in the area can have their wishes granted.  Our team had 37 walkers, both young and old!  We appreciate everyone who donated online to our team goal and we also appreciate everyone who travelled near and far to join us on the walk (and for waking up really early and joining us on a Saturday morning!).  It was so nice to celebrate Eddie and to finally be able to say thank you to Make-A-Wish by giving back to this awesome organization.  Eddie's trip to Disney World was incredible and it truly did help heal all three of our hearts after a rough couple of years.  We enjoyed seeing everyone in their blue "Eddie shirt" to help raise awareness for retinoblastoma too.  What a day and what weekend for the Johnson's!

Thursday, May 7, 2015

Big Brother

Eddie had his 6 month MRI and oncology visit last week.  We were lucky enough to have my mom and sister fly in to help us with this long day.  Unfortunately, our arrival time for the MRI was 10:00 a.m. and the oncology visit at 1:00 p.m. making this an incredibly long day (without food) for the little guy.  When we first jumped in the car to head to the hospital he already started asking for snacks :( We arrived at 10:00 a.m., only for Eddie to finally be taken back for his MRI around 1:45p.m.  They were totally behind schedule and Eddie was so HUNGRY!  We tried to keep him busy and distract him as much as possible.  He kept saying, "I just want my salad sandwich!"  Yes, he wanted a veggie sandwich from Subway.  Weird, I know.  The anesthesiologist rushed in and apologized for the very long wait and said she was ready to take him back.  Mike carried him back (it was his turn) and held him as they put the mask over his face to make him fall asleep.  As soon as Mike came back, we all ran down to the cafeteria to grab food for ourselves, and we got the boy his sandwich.  We were paged an hour later when he woke up in recovery.  He devoured his sandwich while still loopy from the anesthesia.  It was actually so funny, that we caught a bunch of nurses outside his door watching him stuff his face!  They were like, "Whoa, slow down there little man!"  He drank a whole can of apple juice and ate a cake pop from Starbucks too.  We were released and finally able to go up to the oncology clinic for his 2nd appt. of the day and it was 3:45pm.  Once we arrived in the clinic, Eddie was angry.  He wanted no parts of another check-up.  The nurse tried to take his blood pressure and temperature and she couldn't.  He was kicking and screaming and we still had to hold him because he was still unsteady on his feet.  He was a mess.   There was no negotiating, or coaxing, he was done.  Finally, his oncologist arrived and told us that the MRI was good and his blood work was also good.  We were free to go and would do it again in 6 months.  We finally got home at 4:45p.m.  We were all exhausted.

We sat on the couch and put our feet up and debated where we would order pizza from for dinner.  The only problem was that Eddie doesn't really like pizza, and we felt badly having that for dinner after he had such a long day.  Eddie said, "Hey guys, lets go to Habeneros!"  We all laughed because Los Habeneros is a dive of a Mexican restaurant near our house that we like to go to, but it is surely Eddie's favorite restaurant! He loves the chips and cheese dip, and plus the place has a gum ball machine.  We pretty much bribe him and tell him that if he eats his dinner, he can get one quarter for the gum ball machine.  Eddie eats a good dinner, Mommy and Daddy get to have a beer or 2 (well not me anymore!) and Eddie gets his gum ball.  It's always a win, win!  An hour later we all piled back into the car and headed out for cheap Mexican food.  Once again, the boy, stuffed himself- chips and cheese dip, a taco, rice, beans, etc.  He sat next to Nicole and was playing with her, joking with her, and totally being a goofball.  He was laughing so hard I thought he was going to be.... sick.  A second later, he got the hiccups and then threw up. everything. all over his plate on the table.... We all looked at each other.... Seriously? Check please! Before we even finished wiping his nasty face he asked, "Can I still get a gum ball Mommy?"

After we put Eddie to bed that night, my mom, my sister, AND Mike, started bugging me about when we were going to share our special news, and by share, they all meant, a Facebook post.  I was waiting for Eddie's eye exam and MRI to be over with, and so now I had no excuses.  And so we finally shared the news..... Yes, we are expecting baby Johnson # 2!  I have been pretty nervous about everything and I would just like this pregnancy to keep on flying by, under the radar, that is.  I am being followed by my regular OB and a high risk doctor.  Because I had an incompetent cervix with the last pregnancy I had a cerclage placed at 13 weeks.  I also started weekly progesterone injections at 16 weeks.  I will continue to have these shots until 33 weeks.  Progesterone has been shown to prolong pregnancy for women who have previously had preterm labor. The goal is to get to 36/37 weeks and have a c-section.  My obviously weird and absurd goal is 25 weeks.  I would like to be 25 weeks along and still pregnant.  Then, hopefully, 30, then 32, then 34, and I guess we will see. I would like to see the 3rd trimester this time, that would be nice.  I am almost 21 weeks now and two weeks ago we had the anatomy scan.  Everything looked good and all of the measurements we right on track, and its a GIRL!  I am still in shock!  I am so used to firetrucks, tools, trains, etc. that I really don't know what I am in for now!  I mean, I literally wave every time we pass a garbage truck on the road! What is wrong with me?

We talked to Eddie's eye doctor here, Dr. Singh, and he will check the baby's eyes two weeks or so after the baby is born.  The baby does have a 5-10% chance of having the same genetic mutation that Eddie has that causes retinoblastoma.  Again, Mike and I both tested negative for this gene mutation in our blood, so we are hopeful, so incredibly hopeful, that this baby will not have to endure all that Eddie has gone through.  We could have had an amniocentesis to see if the baby has the gene mutation, but we decided not to.  I am too nervous anyway, just about the pregnancy alone, that knowing if the baby had retinoblastoma or not wouldn't do anything for me anyway.  We are all in, and we are just going to take this one step at a time.  I would be absolutely sick if this baby does have retinoblastoma.  I think about it everyday.  But we decided to move forward, and here we are.

We told Eddie a few weeks ago.  Sweet Eddie did not take the news well.  He wasn't excited... He was pissed!  He said, "What?  I don't want any babies in this house!  I HATE babies!"  Ummmmm, what?  You hate babies?  Mike and I were like, uh... awkward. He also declared that he would like to name the baby.... Farty Pants.... Lovely.  Mike started praying for the baby with him during prayers each night, and I think he is starting to warm up to the big idea.  But he did ask me the other day, "Hey Mom, where are we gonna take the baby when we're done with it?"  I asked him what in the world he was talking about, like what did he mean when we are done with it.  And he said, "You know, when we want to get rid of it?"  Ummmmm?   I totally ignored him!! I didn't know what to say, I had to turned around and walk into the other room and laugh! He loves being a big helper, and so I know that will ease his worries.

We are overwhelmed with everyone's words of encouragement, love, and support.   I am sure some people must think we are absolutely crazy for trying this again.  We have a lot of little steps to cross but we are just going to have to be grateful for the journey.  I guess our little secret is out!!

 Eddie's Easter pictures
 He had so much fun.
 The photographer was so good, he was smiling away the whole time.
 He couldn't believe he was allowed to hold the bunnies!
 I thought the thing was going to jump off of his lap and make a run for it!
He is getting so big!
Before mass on Easter Sunday.
I told him to hurry up and finish his jelly beans before mass started (we arrived super early to get a seat) and he literally took about 17 jelly beans and stuffed them in his mouth!
Helping Daddy paint to get ready for the baby.
 Wearing his bike helmet, in the car, on the way to swimming lessons. Safety first.
Post MRI happy boy with a Subway sandwich!
 Soccer practice!
 I set up the sprinkler in the backyard a few days ago.  I ran in the house to grab something and came out to find him butt naked.
Having a fire, roasting marshmallows.
So excited to be at the dentist for a visit.  No cavities!
 My sweet Mother's Day gift that he made at school :)
 His "I have a secret face."
 He is only smiling in this picture because I told him his shirt says #1 Phillies!  At first I told him it said #1 Eddie and he said "That's not how you spell my name..." Duh, I am an idiot!
 And last but certainly not least, a giant slice in his forehead after he walked right into a parking meter.  We went out for ice cream and we were walking to the car, and BAM!  Poor little guy.  He was sobbing.  I took this picture and sent it to Mike at work to see if he thought we needed stitches and he told me to take him to the pediatrician.
They said no stitches, although it looks pretty bad.  He was so sad, he didn't even want his ice cream!
There's going to be a lovely bruise tomorrow!
Never a dull moment over here!
Is it Mother's Day yet?