Silence Broken

Eli (5)

I haven't been able to write for months, but now I'm finally ready.  I think I was overwhelmed by the article in the paper about us.  We were so honored to have been asked for an interview for the local paper.  The sweet journalist came to our home, asked all about our family, and a lot about hemophilia.  I guess I should've expected it, and it's not a bad thing.  It was a very good article.  I just hoped that it wouldn't be all about hemophilia.  Hemophilia is a part of our lives, a big part even, but our family is about so much more.

We get up to music most every morning, have breakfast together, see Matt off to nursing school, hope to get a call about an LPN job at the hospital, do chores, have school, eat lunch, clean up, play, laugh, watch shows together, read books, go to church, take Ana to ballet, take Isaiah to Cub Scouts, have so much fun when we are out together, do prophy, and deal with bumps and bleeds when they come.

Silas (1)

When Eli was first diagnosed with hemophilia, I was so confused and scared.  I needed to ask God, "Why?!  What is going on?!"  I needed to cry.  I needed to lean on others.  I began to be empowered as soon as our HTC met with us.  Our nurse gave us a copy of Laurie Kelley's "Raising a Child with Hemophilia: A Practical Guide for Parents".  They gave us forms to fill out to go to the NHF annual meeting in Denver.  Richard, our nurse, told us, "YOU will be the ones telling the doctors and nurses about hemophilia.  You are your child's greatest advocate."  He showed such confidence in us even though we understood so little of what was happening at the time.  That kind of treatment is so powerful.  It changed us and we are forever grateful to Richard.  When it came time for Eli to start prophy, Richard trained us better than nurses are trained.  I can say that now that my husband is in nursing school.  As we read and read and read, talked to other parents, went to conferences, and went to clinics, our courage grew.  We were stronger all the time.  We could stand up to pretty important medical people for our children and be respected.

Isaiah (9)

Then, the newness wore off and hemophilia just became a normal part of our lives.  I think that's what is supposed to happen.  There are bigger things in my life than hemophilia.  If you met Eli, you wouldn't just be thinking about a boy with hemophilia.  He is a little guy bursting with personality as you can see in the picture above.  He has a great life.  He is so smart.  He loves school, video games, playing with his brothers and sister, and even knows how to change a wet diaper (to my surprise this week)!

Silas is our other little bruiser.  He has been through a lot in his 16 1/2 months since birth.  He is the sweetest most loving baby I've ever met.  His nature is to love you.  It was so hard before he got his port and we could treat him at home, but now that we are doing prophy at home and treat bumps and bleeds immediately, life is getting back to normal.  Here's a sweet picture (above left) from prophy today.  He kept nursing while Matt treated him.

Ana (soon to be 7)

Eli and Silas are 2 of our 6 precious children.

Isaiah is the most amazing biggest brother ever.  He is such a leader, so smart, loves caring for people, reads like crazy, is a gamer, wants to learn chess, and makes friends wherever he goes.

Ana is our tough little princess.  She holds her own in her crowd of brothers!  She loves ballet, art, music, and taking care of babies.  She is a huge help to me.  One of Ana's strengths is that she always knows what she likes and doesn't doubt herself.  I envy her for that and admire her greatly.

Malakai (3)

Malakai is a spunky little dude.  He  loves to make us laugh, loves chewing gum, and is very clear with his feelings.  He's small, but mighty!  When Silas was born, he claimed him as his baby.  He is a fun and adventurous person.


Our 6th little one is due mid-August.  We don't even know if we are having a girl or boy yet, but hope to find out in a few weeks.  We are very excited about our newest addition.

My husband, Matt, is busy with nursing school and working at the hospital.  He is even vice president of his class.  I am "just" a mom.  I have mountains of laundry (for dirty and clean).  I have dishes to get done.  I work very hard at homeschooling our children, and it has been exceptionally awesome lately!  I need to clean the house, but have a hard time finding time to do it.  I am learning and growing all the time. I mess up.  I learn.  I say I'm sorry.

My point is to illustrate that our family has a unique situation with hemophilia, but we are more than that.  Every family has their uniqueness.  We love our family.  Matt and I have been married for 10 1/2 years.  We love each other and we drive each other crazy!  We have been through so much together and it all just makes us stronger.  We have hopes, dreams, and fears just like everyone else.  I am so glad to spread the word about hemophilia, and also to let you know that our crazy little growing family is going strong.  I hope yours is too!

The "Fantastic Five" hanging out playing video games

A Prophy Day with the Reeves Family

Today, Isaiah worked very hard photographing prophy to help me with this post.  I am very pleased to invite you into our home, and share our prophy routines with you.

Isaiah Reeves, photographer

"Time for prophy!" I call out to the troop.  Everyone scrambles to get their prophy treat from the prophy treat jar.  They are only allowed one prophy treat, and only on prophy days.  Here's Ana offering you a prophy treat.  Everyone gets one, hemo or not.  We're all in this together.  As you'll see in this post, we all have a part to play.  Prophy is a family event.
When everyone gets their treat, it's time to get started.  We keep our stock of prophy supplies in the big bookcase you can see on the left.  There's even excess supplies in the bottom cupboards.  I just forgot to open them up for the picture.  We used to keep the factor in a little fridge.  Well, the fridge broke, and it was soon after that they told us that the factor didn't need to be refrigerated anymore.  So, now, we organize the different unit amounts in the drawer in the bookcase.  Here's Malakai showing you the factor in the picture below:

We also have a "prophy cabinet" (shown below). This is where all the action happens.  There is a little of almost every supply in the drawers of the cabinet, and we set up right on top.  It's on wheels too which is VERY convenient.

Before I set up, the hemo boys get their numbing cream on their port sites.  Eli hammed it up for these pics!

 

After the cream is on, I let Eli choose what he wants to watch for prophy.  When Silas develops an opinion on this, he will get to choose too.  Today, he wanted to watch The Aristocats.  Usually, it's a show, not a movie, but it was fine for today.  Then, it's time to set up.  I won't go into all the detail of each and every step that is involved with this, I'll just show you the finished product.  Here's what the setup looks like for Eli's prophy (below).  The only difference with Silas's setup is the heparin.  Eli uses the yellow.  Silas uses the blue.

We're all set up, the cream is set, and movie is on.  Now, it's time to treat.  Eli goes first.  I take off his shirt, peel off the tagaderm, and wipe off the cream with a gauze pad.  Then, I clean his port site with chloroprep.  He knows to make sure no one touches or breathes on his port while I go wash my hands and put my sterile gloves on.  If anything makes him concerned about his port's sterility, I clean it with another chloroprep.  This has happened a couple times.  When I come back gloved, his port is dry and ready to be accessed.  As you can see in the picture below, he is completely numb and busy watching The Aristocats while I accessed him.

We call the pull back of blood the "little red snake".  Sometimes, the kids (Eli included) call "Come out come out, little red snake!".  Then, Eli tells him to "go back home!".  You can see little red snake in the next pic:

When prophy is over, it's time to snuggle.  Hemos need to hold pressure with gauze on the site a little longer than non-hemos.

After at least 5 minutes, we check to see if there is no more bleeding.  Then, a little band aid over his port means Eli is all done!  Well, after he helps clean up the prophy garbage.  ;)

Eli is done.  Now, it's time to set up for Silas.  After each setup, I take the stickers off of the factor bottles and stick them on the calendar, and now include color coded initials.  There's today's treatment (Well, yesterdays, now) on the 9th:

"OK, Silas.  Your turn now, buddy!"  I put him in his bouncy chair, and Ana gently holds his hands to keep him from touching or grabbing things he shouldn't.  After his cream is wiped off, I wash my hands.  I get my sterile gloves on, and then clean him with chloroprep.  I can't trust it to stay sterile while I'm gone like with Eli.  I give it a bit to dry, access his port with the huber needle, and administer his treatment.  < Thank you, Lord, for that numbing cream! >

When he's all done and deaccessed, it's his snuggle time with Mommy!  Ana did a great job!  Silas's snuggle time is a little less relaxing than Eli's because he just wants to nurse.  YOU try holding a baby while holding pressure on his port, and nursing at the same time!  I've done it.  It's not easy, but it can be done!  However, I opted not to today.  I really could use more than 2 arms!

(The towel on my head is to protect prophy from my hair. It works very well.)

Now, our prophy day is complete!!  Thanks for joining us today!  

SCAR +++++

So much has happened since my last post, the biggest being Silas's port surgery.   He had a joint bleed and a muscle bleed, and we needed to get him on prophy to prevent more bleeds. Everything went well.  We were very impressed with all the doctors, nurses, and staff at Peyton Manning Children's Hospital in Indianapolis.  The picture I posted to the left is my favorite.  Silas is such a sweet tempered baby.  He even smiled and waved when the child life specialist was taking him away for his surgery.

We had a lot of support.  My friend, Tiffany watched the older 4 children when I had to take Silas in for pre-op meetings.  My parents came down to watch the children at home while I was with Silas for surgery.  Matt couldn't come right away (clinicals).  So, my Dad stayed with us in the beginning.  While we were in IN, our life long family friends, Tom and Virginia even came down to help.


The hospital was amazing.  They took excellent care of Silas with so much love and compassion.  They also took care of me as the mom.  I was well informed during the whole process, and I could tell that they cared about all my concerns and desires as the mom.

Matt came to the hospital that evening.  He brought Eli with him.  Eli needed prophy while we were gone.  So, it made sense to bring him and treat him there.  It was a sweet time.  Eli and Silas really bonded on a new level.  Their hemophilia gives them a unique bond, and now they would both be on prophy.  Eli has just blossomed since Silas got his port.  He is thinking of Silas now, not just himself.  So, he sticks his chest out more, and never whines or complains about the needle.  Silas watches him.  It is precious.

After a few days, we came home, and continued the post-op factor treatments.  When we got home, we were blown away at the amount of work my parents and Tom and Virginia had done in the house: cleaning, repairs, new improvements.  Words cannot express how thankful we are for the work they've done.

Silas's surgery was two weeks ago, now.  We have had several perfect prophy treatments at home, until yesterday.  He has developed a hematoma over his port.  We're not sure why this has happened, but until it's cleared up, we are treating the bleed peripherally [via ER :(  ], then he will undergo a dye study to check his port for leaks.  If there is a leak, his brand new port will have to be replaced.  This is such a heavy burden on all of our hearts right now.

Yesterday, soon after a sponge bath, Silas's steri-strips finally came off.  So, now his scar is visible.  It looks very healthy, but it is still a big ugly scar on my baby's little chest.  Late last night,  as I was nursing him in the recliner, that scar was staring me in the face.  It (along with the newly developed hematoma) was making me sick to my stomach.  Nobody wants to see their baby's perfect little chest with a big scar on it.  It broke my heart, and I was tempted to mourn over this.  I couldn't let myself.

I started to think about all that scar represents:  All the hours of prayer and discussion over the decision to get a port, all the thought and love that motivated us to go ahead with the port, all the sweet nurses who tried (and often failed) to treat him peripherally for a bleed at the ER, the 3 1/2 years we've worked with Elijah's port, the intense training we received during Eli's post-op hospital stay those 3 1/2 years ago, the amazing support from all of Silas's brothers and sister, all the hard work that went into developing the technology of the port, all the years of study that Dr Kokoska (surgeon) and Dr Bush (anesthesiologist) spent in medical school, my parents and Tom and Virginia coming to help from Michigan, Bubble Wrapped Birth and all the love and support here, all the people around the globe praying for Silas, freedom to treat bleeds at home, and prevent bleeds with prophylaxis. . . The list is virtually unending.

So, I have a choice.  It's all about perspective.  I can choose to weep over my baby's now scarred chest, or I can choose to rejoice over that beautiful unending list of blessings when I look at Silas's scar.  So much love and care is represented there.  I just hope and pray that his port is o.k., and he doesn't need it to be replaced.  One step at a time.  God promises to take care of us, and we have to choose if we will trust Him or not.  I have to trust Him.  If I didn't, I couldn't get through this.

Thanks, Mom and Dad.  You both have taught me to have the correct perspective, and you were the inspiration for this post.

Isaiah, #1

Isaiah

There was a time when there was just one.  One who stole my heart.  One I spent every moment of every day and night with.  One child.  I was always holding him, rocking him, laying down with him, nursing him, bathing him, "slinging" him, changing him, kissing him, reading to him, singing to him, or dancing with him.  He was my day and night.  He was our baby, the one and only.  So special.  What an amazing, smart little guy.

I remember nursing him when I was pregnant with Ana until my belly filled my lap and it was pretty awkward to hold him sometimes.  Then it would bring on the contractions, OUCH.  The night Ana was born, Isaiah got right in the pool with us.  He loved her instantly.  I nursed them together right there in the pool, the expert and the rookie.  He was still sleeping in our bed when Ana came along.  I put a mattress next to the bed a couple months earlier so he could get used to his own bed.  He did a really good job because I was right there and he knew he could count on me if he needed me for any reason at all.  He often climbed up to our bed or I went down to his.

Isaiah holding me through my labor with Elijah

A couple more years past and I was having our third child, Elijah.  Isaiah wanted to help me so much, and held me through each contraction.  His little pajama shirt was getting wet from my arms.  He held me tight.  He was such a great big brother to Ana already and was so happy to now have a little brother.

When Eli was 4 months old, we found out that he had hemophilia.  We were so scared.  I didn't know anything about hemophilia.  Isaiah was scared too.  It became apparent that he was having some anxiety about keeping his baby brother safe.  He was worried that he or someone else would do something that would hurt him and make him bleed.  Isaiah was only 4 years old.  That is a heavy burden for such a little guy.  Of course, we talked a lot about it, but nothing could really take it completely away.  The fact remained.  His baby brother had hemophilia.

Isaiah and Elijah at NHF Denver 2008

The next year was the hardest for our family:  My husband lost his job. Eli had his port surgery.  I found out I was expecting #4.  We moved from the West coast to the East coast.  In my third trimester, I had to make quick decisions for a birth plan that now included possible hemophilia in the mix.  Ultimately, we decided on a hospital birth with a midwife, but fought for a waterbirth.  A few weeks later, our fourth child, Malakai was born making history as the first waterbaby at Women's and Children's Hospital of Buffalo.  He did not have hemophilia after all.  We brought him home the next day.  Isaiah, Ana, and Elijah were absolutely thrilled with their new baby brother.

A year later, I was expecting again, and we were moving again.  My husband was going back to school to get an RN, and eventually go into hematology to help other families with hemophilia.  So, we moved to the midwest and had an awesome homebirth for our fifth child, Silas.  Cord blood testing showed that he did have hemophilia.  When I told Isaiah, you know what he said?  His eyes lit up and he ran out to tell Eli that he had a hemophilia buddy now.  That boy is just amazing and full of love.

My dad, Isaiah, Me
Eli, Ana
Malakai, Silas

He is 8 now, and older brother to 4 little ones.  He is a cub scout, brilliant mathematician, avid reader, scooter and bike rider, gardener, my righthand man, video game champion, and he loves to take care of people.  Sometimes, his "older kid" needs are set aside because the baby's or another little one's needs are more pressing at the time.  I want that to be different.  Not only is Isaiah loved and important just because he is our son, he has given so much to his family.  He has dealt with a lot in 8 years.  I love him so much, and I appreciate him.   Tonight, after the younger 4 were in bed, I hung out with Isaiah on his bed.  We read his Sonic the Hedgehog comic book together.  It was so nice to have that special fun time with just him.  We need more moments like that.  And I really need to learn to catch properly with a glove because the last time Isaiah was trying to teach me. . . I totally stunk.  ;o)

Boo-boos

Lately, I've been giving a lot of thought to my parenting.  We have 5 children:  2 boys without hemophilia, 2 boys with hemophilia, and one daughter who is a carrier and bruises often.  Things are going much better with the jealousy issue.  I am learning a lot. 

Now, let's talk about boo-boos.

One of the best ways to show your children they are special is in how you care for them when they are sick or hurt.  In a family where half of the children have a severe bleeding disorder, it would be easy to give our children the impression that it's not so bad if one of the "non-affected" children gets hurt.  If Malakai falls and hits his head, I scoop him up, cuddle him, comfort him, get an ice pack, kiss it and make it "all better".  However, if Eli falls and hits his head I do all the above, plus call the HTC, set up for factor treatment, call Matt at work, treat Eli, and Matt comes home and takes him in to the ER for a CT scan.  I've caught myself and my husband saying things like, "I'm so glad it was (non-affected child) and not (hemophiliac child)!"  Although it's true that it is less dangerous for a child without hemophilia to get an injury,  this shouldn't be the attitude, much less spoken.

Whether our child has a bleeding disorder or not, they need to be shown compassion, love, and loving care when they are hurt.  Pain is pain even without a bleed. 

Some great tools for boo-boo "tlc":
-snuggles
-kisses
-ice pack
-basic first aid
-band-aids (even when not truly necessary.  Besides, if you have prophy supplies, you have plenty of band-aids!!)
-breastfeeding
-special blanket or toy
-singing
-reading a book
-You know your child.  What would be on your list?

I am not saying that we should baby every boo-boo.  Obviously, there are levels of severity.  My point is that each child needs to feel like Mommy and Daddy are sorry that THEY got hurt.  They should never feel like it is a relief that it was "just them" and not their brother. 

I do not see a problem with this in our family yet.  Hopefully, seeing this now will prevent it from ever being a problem in the future, and be a good example to Ana if she has a family of some hemos/some non-hemos someday.

"Badge of Honor"

In my last post called Jealousy, one of my friends used the phrase "badge of honor" in her comment. 

"It's [hemophilia is] kinda a "badge of honor" in your family. It's seen as something that makes Eli & Silas unique & special. They get more/different attention than the others."

I am so grateful that my friend was so honest with me.  This phrase will not get out of my head!  It kind of haunts me, but also probes a lot of good thought. 

I hate that I have given that impression to others, but especially that I may be giving that impression to my precious children.  Having hemophilia is not a badge of honor in our family.  However, if it is perceived as such to any of our children, there's a problem. 

Hemophilia is a big part of our lives.  We have chosen to make it a big part of our lives.  Matt quit his teaching career to go to nursing school because he wants to work directly with other children with bleeding disorders.  I've started Bubble Wrapped Birth, and have big plans for it's growth in the future.  Because of these things, it would be easy for our children to think that hemophilia makes someone more special to us.  This is a problem. 

Some other moms suggested that I let the other children be involved with prophy.  What a simple idea that makes a big difference!  We tried it this morning, and it was great!  Since hemophilia is a big part of our lives, we need to let everyone have a hand in it.  I did not see one ounce of jealousy or negative feelings at all this morning because prophy wasn't just about Eli.  It was also a special time for Isaiah and me.  I am getting it.  Slowly, but surely, I'm getting it! 

Now, back to the "badge of honor" idea. . .

Our children all have a badge of honor just because they are our children.  They don't have to have a unique physical condition or talent or place in history or birth order to be special.  They are special just because they are exactly who God made them.  What I am learning from this conversation is that I need to be careful to communicate that everyday in my words and actions because that is what really matters.  My children will not remember "what mommy meant", but rather "what mommy said or did and how it made me feel". 

Thanks again for sharing your thoughts with me, and being a part of my growth as a mom!

 

Jealousy

Over the past few weeks, I have learned that our oldest son, Isaiah, has some jealousy about hemophilia.  We talked about it a lot. I asked him to draw pictures of what he'd like about having hemophilia and what he wouldn't like.  He liked the idea of getting prophy and going to the HTC for an appointment just for him.  He didn't like the idea of getting his blood drawn, though!  Then, he drew what he liked about Eli and Silas having hemophilia and what he didn't like about them having it.  He liked nothing about their having it, and didn't like how Eli couldn't play with them when he got prophy.  He told me that he felt Eli got all the attention because of his hemophilia.   

I was so sorry and heartbroken that he was carrying these feelings with him.  He never acts like he's jealous.  He is very protective of Eli and Silas because they have hemophilia, and he was so pleased for Eli when he heard that Silas had hemophilia too.


So, our conversation got me thinking.  Yes, some of us need factor, but whether we need to get prophy or not does not make us who we are.  I talked to Isaiah about it, and he listened.  Now, I am trying to pay closer attention to what is unique and special in each one of my children's lives instead of our current "affected vs. unaffected" tally.  I am still new at this and I'm learning.  And right now, I am being reminded that. . .

I am not only a hemo mom, I am a mother.