June 25: Makenna's Journey

 

 

One thing I learned from Makenna's life is to savor every beautiful moment.  Life is full of necessities, work that need to be done.  Work is good.  However, we should seek after and savor the wonder and beauty that surrounds us.  This includes, but is not limited to, the world around us, our family and friends, our children and spouses... etc.

 

I would like to express my gratitude to everyone of my family members, old friends, and new friends that have shared so much love and concern for Ken and I.  We are so thankful for the thoughts, prayers, gifts, and services we have received.  Many people have commented that I seem strong for having gone through such a tragedy.  My only explanation is the peace my Heavenly Father has brought me when I pray and the love I felt as many have reached out to us.

Thank you!

 

I am excited to share some photos that were taken of Makenna's last few hours with us.  These were taken by Matthew Tennison, a professional photographer that donated his time to us through a non-profit organization called "Now I Lay Me Down to Sleep" .  I will forever be grateful to him.  He was able to capture our last tender moments together perfectly.

 

It has been hard trying to return to "normal" life.  But, the world keeps turning, and so do my boys....hahaha, as they should.  I have a feeling the experience of loosing a child has changed me forever, for better or worse I am not yet sure.  But, definitely changed.  I can still feel my sweet baby girl next to me and I know she is watching out for me.  She will forever be with me.  I hope and pray  I can take the lessons I have learned to help me be a better mother, wife, friend, and woman...



 

It has been a privilege sharing this awful and incredible journey I have taken with Makenna.  I know many of you have journeyed with us.  It has been not only therapeutic for me, but I have found comfort in knowing that her life has touched so many.  I am so proud of her.  Our journey is not over.  She just took a small detour ahead of me.  I look forward with a brightness of hope to that day when we can walk together again...



June 16: Goodbye Our Sweet Makenna

I can't really find the words to adequately describe how I am feeling this morning.  My sweet baby girl Makenna returned home to her Father in Heaven last night, Sunday June 16 at 9:45 pm.  She passed away peacefully and with her loving parents and grandmother Allan.  Saturday had been a great day... My dad and Tom brought the boys to Hershey for a visit.  After a quick visit with Makenna, mom and I took the boys for lunch and to the park so that the two grandpas could spend time with Makenna.  Tom got to meet her for the first time and my dad held her for a couple hours, enjoying every second.  My dad later told me he had taken the time to say goodbye...

  She had done well Saturday night and Sunday morning, not having one episode.  After church, mom and I got to the hospital and she was peacefully sleeping.  I held her next to me, singing and talking with her.  After about an hour, her heart rate went down and up like it used to.  However, this time it did not come back down on it's own.  The doctors and nurses did what they could, but it was not meant to be.  I called Ken and he came to Hershey right after work, getting there about 7:45 pm.  They moved Makenna into a nice private room and we all took turns holding her.  A photographer came and took pictures of our last hours together.  It was a special experience and I will share photos when I receive them.  We were able to hold her, kiss her, and love her until her amazing spirit left her poor little broken body...

I am in awe and completely grateful that I was chosen to be Makenna's mother.  I am grateful for my parents and their help so that I could spend almost all 47 days with my little girl.  Ironically only missing one day, Mother's Day.  Everyday she was alive was a gift from God and she has touched so many lives in that short time.  We did not make MY goal of getting her home, but the hospital was all she knew and we were with her.  I am at peace with that.

You may wonder why such an awful thing could happen, but please don't cry too much for her and me.  We shared a wonderfully beautiful experience together.  I got the privilege to carry her inside of me, to be part of her entrance into this world, to be next to her as she struggled and succeeded many times to stay alive, and then to be with her as she exited this mortal life.  As my savior Jesus Christ taught... "neither hath this (girl) sinned, nor (her) parents:  but that the works of God should be manifest in (her)" (John 9: 1-3).  This was not her fault, our fault, or God's fault.  But, I hope we can all be inspired by her life.  Thank you all for your thoughts and prayers, they have truly been felt...

Walking with Makenna:  Mt. Gretna

My last painting of Walking with Makenna here near Hershey in hopes that we will one day be able to continue it together...Goodbye for now my daughter.

June 14: Pushing Makenna

I will start off with the good news, we may have solved Makenna's high temperature issue.  After all of the tests came back negative, they thought it might be environmental   She was on a heat bed that would heat up when a probe on her belly read too low.  One of the nurses thought we might have been baking her.  We turned off the heat and put clothes on her.  She has not had a high temperature since!  However, she is still not acting like her feisty self. 

 I got a surprise visit from my friend Kristin Washburn on Wednesday.  She flew in to Philly from Utah for some business thing.  She then drove up to Hershey to see Makenna, me and my mom.  It was so comforting to see her... it made me miss Utah though!  The next day, my mom got to hold her for the first time, it was a great experience for the both of them.  My dad, Tom and the boys are coming again tomorrow to spend more time with Makenna.  We are so blessed to have great family and friends.

Like I said before, one step forward and two steps back...  Makenna's blood pressures have been elevated, she has stopped digesting all of her feeds, and she has periods when her heart rate drops suddenly from about 160 to 80 and then back up, sometimes over 200.  Her oxygen saturation still dips down as well.  The doctors don't really have an explanation.  Her electrolytes are unbalanced because of the diuretics she was getting, so they have stopped that.  However, they have to keep a close eye on her so that she doesn't start retaining fluid and go into heart failure.  This could explain her digestive problems right now and why she is not feeling too good.  But, it doesn't really explain her variable heart rate and high blood pressure.  The short term goal is to get her electrolytes back to normal and see if some of these symptoms can correct themselves.  Once her electrolytes are where they want them, we are going to be really aggressive to get her off the vent and get her home.  Some of these symptoms could be from her underlying problem:  trisomy 18.  We can't fix that!  We will try and treat the symptoms to keep her as comfortable as possible, get her home as soon as we can so that we can hold and love her until she is called home.  What joy to bring her home...

There are times when I think about loosing Makenna and it feels as though I will suffocate from the weight of my grief.  Never have I felt such grief.  However, I am so grateful for my Heavenly Father  and the peace that comes when ever I pray and ask for it.  He is there and has not failed me.  He loves me and He loves Makenna.  This I know!  I also know that He is there for both of us as we go through this terrible and amazing experience.  I have alternated between preparing for her death and preparing for her life.  I am terrified of both.  I have been trying to put my faith in God for His guildence, comfort, wisdom, love and help.  

June 12: Another Hurdle for Makenna

 

I have been in awe with how well Makenna has done after her surgery last week.  They were able to keep her pain under control and on Friday, they took out the epidural.  She has not had any pain medication since Friday and seemed to be comfortable.  She was up to her full feeds by Saturday and everything seemed to be going well.  I am getting better and better with changing her trach ties and changing the trach itself.  I might have to become a nurse after all this training, hahaha....

Changing her trach:  she loves sitting up

Saturday was a great day!  Ken, my dad, and the boys came down to visit Makenna.  Garek still doesn't care too much, but Alec is getting more comfortable.  He was even excited to see "baby sister", as he calls her.  He touched her nose and then his, saying "baby Kenna loves Alec".  It was very cute!  My dad then got to have a long visit and help with care, while my mom, Ken and I played with the kids at the playground.  On Sunday, mom and I went to church in Hershey and met a lot of people offering to help in the future, as we will be bringing Makenna down often to Hershey for care.   Our Heavenly Father is truly looking out for our family.  Thank you every one for your prayers :)

Makenna with her new feeding tube, you can see it coming out of her stomach

 

Sunday, we noticed that Makenna wasn't quite herself.  She was more lethargic and less active.  Then later that night, her temperature was higher than normal.  They took blood, urine, and mucus to culture and check for infection.  They also did some x-rays.  Everything has been negative so far, though she still has a high temperature.  Our new hurdle is trying to figure out why her temperature is high.  Last night it was about 103.  Tylenol helps bring it down, but we still don't know were it is coming from.  We are hoping it might just be some inflammation from the surgery.  She did have major surgery a week ago.  That isn't that long ago.  She is on antibiotics just in case.

I have been in awe of the many blessing we have been receiving.  I am so blessed to be the mother of such a wonderful and amazing little girl.  She has taught me so much as I have watched her endure everything she has.  She doesn't cry much and yet has been through so much.  I have learned to completely trust my Father in Heaven.  Her life is truly in His hands and I know that she will be able to complete her mission on this earth.  However long it is.  She is an inspiration to me and I pray that I can help her through this.  Her fever has set us back a little more because they won't push her to get her off of the ventilator while she is not feeling well.  Please continue to keep her in your prayers and I will let you know how she does.  Thank you all and God bless!

 

June 4: Makenna's Surprise Surgery

Having a baby in the NICU for any kind of extended stay is an emotional roller coaster experience.  Your child might take one step forward, two steps back, five steps forward, and then three steps back.  You continue hoping that overall you are headed in the right direction.  However, the ultimate goal of bringing your baby home feels like it will never arrive...

Before surgery with her oral feeding tube

Makenna was scheduled for a gastric feeding tube (g-tube) placement on June 4.  This was supposed to be a straight forward and simple operation.  Friday before the surgery, they took an x-ray of her gastrointestinal system to make sure that everything was ok... It wasn't.

The Pediatric Surgeons that would be doing the surgery called us on Monday evening to tell us that Makenna's bowls were malrotated.  Basically, her bowls were not in the right place.  Her bowls have worked so far and so we did not know there was a problem until they looked.  Because things were working, she was in no imediate danger, but she had a high risk of her intestines twisting if we did not correct the problem.  They also discovered that her stomach and liver were in her lower rib cage and poking a hole through the diaphragm   The surgeons told us the plan was now to put things in a better possition, fix the diaphragm, insert the g-tube, and while they were at it, remove her appendix (just for fun).

Just after coming back from surgery

All of the sudden a simple surgery turned into a major one and they wanted to do it the next day.  I was a little overwhelmed, but Ken and I gave our consent because this could help her to be more comfortable and possibly help her breathing by fixing her diaphragm.  Tuesday was a big day!  Ken came down for the day and got to hold Makenna for the first time.  It was a special time.  They ended up taking her for the operation around 4:00pm even though it was tentatively set for noon.  She returned to the NICU at 8:30pm.  The surgeon said that is went as expected with no excitement, which is good.  She has an epidural for local anesthesia and other pain meds are given to her on a needs basis.  She looked pretty good after surgery and seems to be doing well.  The best part being that she has no tubes in her mouth and so we can now see her beautiful face with nothing in the way.  We are trying to keep her pain under control and her job now is to just rest, heal, and recover.

Walking with Makenna: Hummelstown

Because Makenna was doing so well after her surgery and we couldn't really do much with her, mom and I took another break from the hospital.  We were in downtown Hummelstown, a cute little town.  It was perfect weather and we knew it was going to rain tomorrow.  We had a pleasant evening and a nice man even gave us his left over Chinese food.  So, you could say that I painted for my dinner, hahaha....

June 1: Happy Birthday Makenna!

 

 

Happy Birthday Makenna!

 

 

 

 

Today is her one month birthday!  She has beat one of the statistics.  She has made it one month.  Mom and I had a little party for her.  First, we went out and painted another painting for her bed side.  I called it "Walking with Makeena 2" because I am thinking of doing a series.  These paintings are helping me to deal with what is going on.  They symbloize my hopes and dreams for my daughter as well as my commitment to journey with her throughout her life.  Her journey may be short during this life, but I have a hope of continuing our walk later....

 

 

Mom and I also made some visual stimulation for inside her bed because she is starting to look around more and actually focus on things.  We also brought her a hat that she got from our cousins and took pictures of her.  What a party, huh?

 

 

I have been able to be more involved in her care.  I am changing her trach ties, which I will have to change once per day.  I take her temperature, change her diaper, suction mucus through her trach, and give her baths.  On Sunday, I get to help change her trach beause I will have to do that once a week at home.  I am learning how to do so many things I never had really wanted to learn.  But, we do what we have to.  We have decided to add another hole in Makenna.   She will be getting a gastric feeding tube (g-tube) next week.  This means we will feed her dirrectly into the stomach insted of through a tube in her mouth.  This way she can get that tube out of her mouth and possibly do some oral feeding.  She won't be able to be totally bottle fed, but maybe little bits.  Eventually, if she is able to eat enough, the g-tube can also be reversed.  This will be another step toward home!

May 26: Makenna's First Trach Change

 

 

This week has been hard.  The trach that they put in Makenna (a shiley) was too big for her.  The inside of the trach is 30mm and x-ray showed is was resting on the branch of her lungs and a major nerve.  Every so often her stats would drop and she even turned blue a couple of times, very scary.   Giving her a boost a oxygen or repositioning the trach a little would help her come back.  But this would happen about every 1.5 hour.  It was hard to leave her.  The nurses can't be there all the time and we had to hurry and find someone a couple of times.  They ordered a custom sized trach for her, but they didn't know when it would come. 

 

The first trach change was scheduled for May 22, but we ended up waiting until May 26.  The surgeons did the first trach change and did it while mom and I were away.  The custom trach never came so they had to put in another trach that was 30mm long, but it was a different model, a bavona.  That seemed to really help.  It is still too long, but she only seems to drop about 1-2 times per day instead of every couple hours.  We are still waiting for the custom trach... but the new trach is much better.  We have also been able to wean her oxygen requirements down little by little.  We have also been able to increase her feeds.  She is being fed by an oral feeding tube, but is totally on breast milk and formula, no longer TPN through her IV (or PIC line).  She is not getting breast or bottle fed at all because of her nasal passage.  Think of trying to suck on something while your nose is plugged.  She is now up to full feeds for her weight.  We don't know yet if she has gained any weight....

 

Ken encouraged me to get out of the hospital and doing something else.  So on Tuesday, my mom and I took the morning off to paint.   I painted on location which I had not done in a long time.  My mom and I passed this barn a lot on our way to the hospital and I loved the morning light on it.  It was a hot sticky day, but we positioned the car so that I had some shade.  I didn't have my easel, so I used the baby seat to prop up my painting.  We hung the painting by Makenna's bed.  I titled it "Walking with Makenna", which is of course the inspiration for this blog.

May 17: Makenna's Trach

 

 

Our goal is to get Makenna home, cherish and love her everyday we are blessed to have her.  In order for her to come home, we need to address her heart, airway, feeding, and temperature issues.  We have solved her heart issues for now.  The next issue to be addressed is her airway.  Because Makenna's nasal passage is blocked and we can't tell her to breath through her mouth, she would suffocate if we took her off the ventilator.  We have two options:  surgically drill holes in her nose or a hole in her throat (tracheotomy).  After examining Makenna, the surgeons decided that she is too small for the nose surgery.  They need room for interments and her nose is just too small.  So, we chose the tracheotomy option.  This will give her an airway and when she gets bigger we could have the nose surgery done.  Also, the trach is reversible and could be removed at a later date. 

 

 

 

I held her a couple more times before she went in for surgery on May 17 because she could not be moved for at least a week.  So, I would not be able to hold her until she healed.  Now, she is a feisty little thing.  Always trying to pull out her tubes and giving the nurses grief.  I asked how they were going to keep her still for a week.  They ended up drugging her and tying her arms down.  It was hard to watch her.  She hated it.  It was hard seeing her after the surgery.  She had the huge vent coming out of her neck and was so drugged that she looked like a doll.  Lifeless and empty...

 

 

 

We are so blessed to have a wonderful supportive family and parents that are retired.  My mom and dad drove from Utah when I started having complications and that is why my mom was here when I gave birth.  My mom and I are living down in Hershey at the Ronald McDonald House, which has been such a blessing.  My dad has been playing "Mr. Mom" and watching the boys while Ken works.  Tom and Lib are also helping when they can  We are all very busy.  Mom and I visit home at least once per week and the boys have come down a couple times.  It has been really hard to be divided.  It feels like I have two holes in my heart.  One is filled only when I am with Makenna and one is filled when I get to go home.  I am never complete.  I will not be complete until Makenna gets home.  I hate being away from Ken and the boys,  but I am advocating for Makenna and learning about the care I will need to give her when she gets home....

 



May 10: Starting to Treat Makenna

 

 

So, babies born with trisomy 18 can have a number of different issues.  The most common issue that they die from is basically congestive heart failure or apnea (forgetting to breath).  Makenna was born with some of the classic signs.  She has pointed elf-like ears and her ears are lower than normal which indicates she might be partially to totally deaf.  She has overlapping fingers that clench.  Her heals and back of her head are over defined.  Her kidneys seem to function but she has extra cerebral fluid in the posterior of her brain.  Her eyes are normal.  However, her nasal passage is completely blocked.  The bone never formed the hole.  Makenna was born with three holes in her heart;  PDA, VSD and ASD.  The VSD and ASD could be addressed at a later date, but the PDA could not.  All babies are born with this hole, but it usually closes within a couple days after birth.  Makenna's did not.  The doctors told us that sometimes a medication could be given to infants with a PDA hole and it sometimes closes the hole without having to do surgery.  We opted to try that.

 

Makenna was given one round of Indomethazone on May 10.  There was no change, but we could try one more round.  So, the next day she was given a second round of the drug.  On Monday May 13, the cardio echo showed that the hole had closed some and they thought it was enough to not be causing much of a problem.  So, we had avoided surgery so far!  Yeah!  Her breathing seemed to be a little better as well. 

 

 

 

 

Over a week had gone by and I had not gotten to hold her yet....but on May 10 I finally got to hold Makenna!  It was quite the production.  The nurse and someone from respiratory had to help.  The tubes from the ventilator were taped to me and I couldn't move vary much, but it was the best experience.  She was next to my skin to keep her warm.  I was supposed to hold her for one hour, but I got to hold her for almost two.  She did so well.  Her breathing and heart rate was better as we held each other.  I talked and sang to her.  I seemed to breath better after being able to hold her.

 

 

May 1: Makenna's Birth

 

Makenna's life has been a miracle from the start.  Through a series of complications with the pregnancy, I was only one mile away from Hershey Medical Center when my water broke on May 1, 2013.  I was referred to the Maternal Fetal Medicine group at the hospital a couple weeks earlier, but  we lived two hours away.   I happened to be staying in Hershey with my mother at the time.  After arriving at the hospital on the ambulance, the doctors saw that I was bleeding a lot.  The placenta had started detaching and the baby's heart beat was dropping.  I was rushed into a surgery room for an emergency C-section.  In under 10 minutes, I was asleep and Makenna was out of me in three minutes.  She wasn't breathing, they had to resuscitate her twice but she survived.  She was 3 pounds 6 ounces and 15.5 inches long.  I woke up a couple hours later, very groggy.  Ken had gone to see Makenna and came to tell me she was OK.  I could tell he wasn't telling me everything, but was too exhausted to press the issue...

The next morning, Ken explained that Makenna had some physical characteristics that indicated she was not completely healthy.  The following week we had a meeting with the neonatologist and the geneticist which confirmed our fears....Makenna was born with trisomy 18, Edward's Syndrome.  She has an extra chromosome 18.  The doctors began telling us the awful statistics, 50% of the babies born alive with this syndrome die in the first month and 95% die before their first birthday.  Trisomy 18 is considered by the medical community to be "incompatible with life".  Actually most are not born alive so Makenna was already a miracle because she was alive.  The doctors gave us the option to take her off of the ventilator and let her die peacefully.  We could also do every measure to keep her alive, but they gave us no hope of her having a life with quality.  Her body won't develop and most likely will be severely physically and mentally handicapped.

I was devastated, my worst fear seemed to be coming true.  I never thought I could handle loosing a child.  How can a mother decide when and where her child is going to die?  It is an awful power and I didn't want it.  After much crying and praying to my Heavenly Father, I realized that God gave her precious life to me and allowed me to have her alive.  Her life was in His hands.  I do not have to choose.  She will be with me until God calls her home.

Ken and I decided we would not take her off of the ventilator.  She was just as well off as any of the other babies in the NICU.  Any of the others would die if you took them off of the ventilator, with or without the extra chromosome.  However, we also don't want to keep her alive at all costs just for life.  We have decided to do the least invasive measures first and to take each day and decision at a time.  As long as we are trying to make her comfortable and she continues to do well we will continue to fight for her life.  However, if we start trying to save her to postpone our grief, it will be time to let her go...