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)

"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!

 

To My Husband with Much Love

Thank you, Honey. 

Thank you for being my best friend.  Thank you for your love and support through everything these last 9+ years. 

When we first found out about Faith, and then couldn't keep her, you held me together through all of that.  The worry, the confirmation that our tiny baby was no longer living, the pain, the hospital, the incredible grief. . .  We came through that together with God as our strength.

Thank you for 7 1/2 years of successful breastfeeding.  I couldn't have done it without you.  When Isaiah was born, and had trouble latching on, you never suggested I give up and just give him a bottle.  Those first nights of pumping colostrum and spoon feeding him every 2 hours were so hard, but you were so strong right with me.  You even rocked him between feedings so I could sleep.  A few days later when the roof of his mouth smoothed out and he nursed with no problem at all, it was a victory for all three of us.  We all worked very hard for that.  Also, you've always been very supportive through all the (often difficult) tandem nursing months and years with each of our 4 children. 

You love me through all my hormonal mood swings.  You always look at me like I'm the most beautiful girl in the world no matter if I'm a size 4 or I'm 8 months pregnant and no longer fitting into my maternity clothes because I've gained 50 or 60 lbs!  You are an excellent birth assistant.  If you are with me, I know everything will be ok.  Our births have been so amazing mostly because of you.  I could never have been so relaxed and at ease if you had not set that tone for me. 

You are such a great daddy.  I am so thankful our children have you.  No matter how busy you are, you make time for them.  You are a patient teacher and love them with the love of Jesus.  I love seeing you wear each of our babies in the sling or baby wrap.  You have become just as much of a breastfeeding, baby-wearing, gentle birthing advocate as I am, and sometimes even more than I am!   

I am so proud of you.  When Eli was diagnosed with severe hemophilia, a seed was planted in your heart, and now you are working very hard to earn your nursing degree so that you can help other children and families with bleeding disorders. 

I love how you love being a daddy.  You are even more baby crazy than I am!!  It doesn't even matter to you if we have more children with hemophilia.  On the possibility of having multiple little hemophiliacs, you just say, "Line 'em up!" (for infusions).  You just smile on the idea of caring for each child with their own unique needs. 

 As we anticipate the arrival of our fifth child any day now, I wanted you to have the spot light.  You are the greatest husband and daddy I've ever known.  I love you.  Thank you so much for everything. 

Love,                    

Me                  

"Normal" by Amber Webb

I read this the other day, and was deeply moved.  This beautiful note was written by my cousin's wife.  They, like us, have a new normal.  I think you will be blessed by these words spoken straight from her heart. . .

~Normal~

It's funny how that word takes on new meanings as we walk through life. Normal.
I remember being pregnant and talking to Micah about what it was going to be like to have a little boy: all the things we would do; where we would send him to school; what his room would be like; who he would look like. I remember holding him in the hospital room when he was born and thinking, "This has to be the most beautiful baby ever born." The night the nurse told us Ben had Down Syndrome is also one that I'll never forget. The most heartbreaking moment for me was hearing Micah say, "That means I can't teach him to fly." His airplane themed nursery suddenly didn't seem to fit. It was almost as if we were mourning the loss of the child we planned for. Everything changed in that moment. This "normal" we had planned suddenly vanished.
The days and weeks after that have had their ups and downs. Some days I wonder where the balance is between acknowledging that Ben is different and ignoring it completely.
Here's what I've learned so far...
My son is different than yours. SO WHAT. My version of normal has changed. SO WHAT. I'm thankful for that pesky extra chromosome and I'm thankful the Designer decided to bless us with such wonderful little boy.
Micah is back overseas working hard and my time is consumed by a precious little boy with Designer genes.

God is still good and that's MY normal. What's yours?  

Elijah



Eli and Silas

Elijah is 3 1/2 years old.  He will be 4 this December.  He is our third born child, and our only hemophiliac.  When we were expecting our fourth, Malakai, a big part of me was actually hoping he would have hemophilia too so that Eli would have a hemo buddy.  The strangest thing happened the moment we recieved the news that Malakai was unaffected.  I was sad.  I was so sad for Eli.  He was still my baby, not even being 2 years old yet.  Now, 2 years later, I am so thankful that Malakai does not have hemophilia.  As you probably know, we are due to have our fifth child, another boy, in 4 weeks.  Again, we will find out after his birth if he has hemophilia or not.  Elijah has been expressing that he wants Silas to have hemophilia like he does.  This breaks my heart!  Of course I would never choose a bleeding disorder for any of my children, but if Silas does have hemophilia, then that is part of who God made him to be.  I know it would be very special to Eli if Silas had hemophilia.  God has a special plan for each one of our children, and for Eli, having hemophilia is part of that plan.  Please pray for him.  I don't know what the next few weeks will reveal, but I want Elijah to be just as happy about Silas even if he does not have hemophilia.  I don't want his little heart to be broken if Silas also turns out to be unaffected.  Please please pray for him.  He is such a sweet, passionate, strong little guy.  His older sister, Ana is a carrier like I am, but it's just not the same.  Elijah is very much on my heart as Silas's birth gets nearer.  I love him so much.

So much to be thankful for. . .

Today, I heard a story of a symptomatic carrier who nearly lost her life during the birth of her first child.  I also heard from a woman who's daughter has severe hemophilia and was badly bruised at birth.  My heart broke for these families, and I ached as I imagined what they went through at that time.

If you've read my birth stories on here, you know I've never gone through anything like that.  So many people deal with so much more than we do.  Something like that could happen to us at any time.  We need to thank God for his loving mercy in sparing us from such hardships as these.  We should never take anything for granted.  Every moment is a gift.

I also heard from some other moms today.  What stuck out to me about them was their ability to look back and have total confidence that they did what was best for their baby.  That has never meant more to me than it does now. 

In the past, I've met moms who were not given the best care, and their baby suffered much for it.  It is hard for those moms not to personalize the blame, even when they too were also a victim. 

These may be somewhat random thoughts.  I just want to pay tribute to this amazing community we've been a part of for almost 3 years now.  I learn so much from all of you.  I really believe that we are much stronger when we have each other.  Thank you so much for sharing your stories and insights.  I thank God for you!