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

Thankful

Often times, the scary stories get the spotlight, and understandably so.  However, I think it is very important, especially to new hemo parents, to highlight the good stories too.

Today, I was (am) terribly heartbroken for another's grief.  In my heartache, I look at Silas, who had fresh blood smeared on his face.  "Uh oh, buddy.  Come on." I said as I scooped him up and prepared his 2mls of Amicar.  He took it without any struggle.  I cleaned off his face.  The bleeding was from under his front lip, and the Amicar immediately went to work and got it under control.  Silas got down and continued to play.

A couple hours later, Eli was standing on the highchair to reach something.  He fell behind the chair, twisting his body, and hitting the floor hard.  I jumped up, scooped him up, and carried him to my bed.  Ana got the computer to start a show for him, and a bag of frozen carrots for his ankle (frozen veggies work better than ice packs!).  I put his cream on his port, and set up his factor treatment right there in my room (it really helps to have a wheelie cart).    I gave him his factor, and he's fine.

Both of these situations were quickly and easily handled because we had the tools necessary to handle them.  I couldn't be more thankful.  I am so thankful for factor.  I am so thankful for amicar.  I am so thankful for the bookcase full of medical supplies in the dining room.  I am so thankful for the excellent training we received in CA by our first nurse, Richard McGaffic.  I am so thankful that our boys have never had inhibitors, and that if they ever did, there is treatment.

Let's hold each other up through the inevitable hardships that come, but let's always take the time to count our blessings.  

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!  

Jeff Johnson, "a totally 'normal' hemo" shares his heart on how our feelings can affect our children:

Jeff and his wife, Stephanie

"I'd like to approach a subject here that's been present in our community for quite some time and unfortunately isn't always dealt with as openly and honestly as it could be. I'll warn everyone now that this is challenging, both of and for, parents. Not in a negative way but in a healthy, self examining way. Still, one should probably not proceed unless one is prepared for reflection, self examination and even, perhaps, the rejection of deeply held beliefs and feelings.

"The subject I'd like to discuss is the attitude that having hemophilia makes one less than normal and warrants feelings of guilt or regret in a parent or should be viewed as "bad news" and cause for mourning or distress. Now, I'm pragmatic enough to admit that yes, hemophilia is a whole different level of lame and I'm not demeaning my own condition. Bleeds suck, especially when they prevent an activity or life choice from playing out as we would have preferred. And it is expensive, of course, and time consuming. Yes, it has numerous challenges. But at the same time it is important to maintain perspective. There are countless conditions worse than hemophilia and in the grand scheme of things being born a hemo is far better than being born with MS or cancer or sickle cell anemia or so on. While a challenge, hemophilia isn't any longer a death sentence or even condemnation to a life that is less than normal. Our factor today is amazing, as is our care. Compared to previous generations and the trials they experienced, today hemophilia is barely even a disorder, which is why I often joke that "hemophilia is the new asthma!" While it may seem, to a clotter, that we hemos are afflicted with this terrible curse and will never experience the life which others would have wished for us, the reality, despite even the fears of a mother, is that there is absolutely no reason to believe that a hemo's life, especially today, will be any less full or rich or adventurous or rewarding than the life of our fully clotting peers. This isn't romanticizing either. Hemophilia has in many ways become an affliction of the soul and mind just as much, if not more than, of the body, and it's important that we treat it in those regions as diligently and bravely as we do the body.

"Which brings me to the part where I am going to challenge parents. When a parent (or grandparent, uncle, aunt, guardian, etc.) makes a statement that they feel guilty or regret that their child has hemophilia, what they are really saying is that they feel bad because their hemo is less than they could have been. Argue the point if you like, but tracing back from these statements, which I see often, that is the only logical end point. If one feels guilty for the condition of their child, then one sees reason to feel guilty, which means one sees in their child a condition in which that child is diminished or held back from being the something more they would be were that condition not present, which means that they see their child as being less than they could be. As a hemo, I must admit, that when I see someone expressing feelings of guilt because they had a hemo, or a refusal to have children because they're a carrier, or sharing the "bad news" that someone had a hemo, I feel demeaned and somewhat offended, as the greater idea those statements convey is that we hemos are less than we could be, less than our parents hoped for, less than our siblings or peers, less desirable. Less. This is simply not the case. As I discussed earlier, we hemos are equally capable today as any clotter. With modern treatment there is simply no challenge, activity or experience partaken by clotters which it would be impossible for a hemo to participate in. We are active, we are strong and yes, we even play football and hockey now. Yes, that really happens. But to get back to my main point, it is more attitude that restrains us today than hemophilia. We face far more challenges in overcoming the perception that hemophiliacs are fragile creatures at risk of greater harm than our clotting peers than we do of actually being held back by our condition itself, and this perception finds its home in the fears and guilt of parents and guardians.

"I will break here and state that yes, being a parent is incredibly difficult and the fears that a parent faces are sometimes insurmountable. We all know this, whether we are parents ourselves or not. At no point do I intend to convey that parents don't have a tough, demanding job and in no way am I demeaning a parent's emotions, fears or feelings. They are all reasonable and understandable. What I am hoping for, however, is to challenge some parents to engage in genuine self examination and to really confront how their emotions, fears and feelings affect the hemos they are experiencing those feelings for. To delve into themselves and ask themselves questions which many parents eschew, such as "Are these feelings beneficial? Is the way I feel good for my child? Even though I feel this deeply, is it really best for my child or is it creating an attitude that is detrimental to my child?" These are difficult questions, yes, but they are good ones to challenge one's self with. Quite often in my experience in the hemophilia world I have been confronted with parents who don't take this step and instead express their fear/guilt/regret/what-have-you and then stop there and wrap themselves in the mantle of parenthood, stating that "As a parent I am allowed to feel however I want!" Well, yes, we all are. And that's the catch. As a parent one is absolutely entitled to feel however one does, but parents are not released from the consequences of their feelings and the affects which they have on others, just as a pebble cannot be expected to be dropped into a pond without causing ripples to emanate and flow away from it. One's feelings of guilt for having a hemo may feel entirely legitimate to them, but in their child they may cause feelings of inadequacy. While a parent is mourning that their child has hemophilia they may be subconsciously communicating to said child that they are not as special and capable as they could have been born. The ramifications of a parent's attitude, even if not explicitly stated or expressed, are profound. I've seen, too many times, proof of this at summer camp. I've attended hemophilia camps since the mid eighties as a kid myself, and have worked as staff since the nineties. Every year, without fail, I observe at least one hemo who comes into camp meek and apprehensive. They're unsure of their potential and afraid to fully engage. As the week progresses and we work with them to instill courage and empowerment, they come alive, and by the end of camp they are running, jumping, climbing rock walls and living with the gleeful abandon that they deserve. It's glorious. But then, on the last day, they retreat back into themselves, especially when their parents show up. Now that Mom is around again it's time to go back to being a hemo, a defective kid who isn't "normal." It breaks my heart every time because it doesn't have to be. Many parents don't even realize that they are doing this, which is sad as well. They think they've contained their guilt, their fears and their regret and that their child is completely unaware, but that's merely an illusion. Their child is very much aware of how Mom and Dad feel and so, out of his love for them, he plays along. "Mom feels guilty that I have hemophilia so I'll be good and not do anything 'dangerous.'" "I don't want to make them feel worse so I won't try out for soccer." And so on and so forth. They don't live up to their potential and their parents never see what their child is really capable of. Hemophilia hasn't held them back; the attitude and perception that it is less than normal and cause for guilt has. I see it all the time.

"So again, I challenge parents to really look deeply into themselves and examine their emotions and feelings. Ask yourselves if how you feel is really, legitimately warranted and if it is the best way to feel for your child. Examine why you feel a certain way and whether or not it is based on fear or reality. Reject the comforting but unhelpful sanctuary of "I'm a parent and can feel however I like" and instead proceed with the attitude of "Even how I feel inside affects him so what is the best way to look at life? And him?" Of course these kinds of exercises are difficult, but so is learning to self infuse, which your little hemo will have to do regardless. Consider this "prophy for the soul." I promise you, it's for the best, for everyone. Hemos who grow up in homes where the attitude is "You just have hemophilia, not 'made out of tissue paper syndrome' so get outside and play" flourish.

"In closing I'll pose the question, "What is normal anyway?" Not having hemophilia is normal? I call shenanigans. From my perspective, it's clotters who are abnormal. They freak out at the thought of getting stuck with a needle, a bruise gives them panic attacks, they think a limp is a sign that it's time to see a doctor, they usually can't wrap an ankle to save their lives. Poor clotters... So far from normal... See what I'm getting at? There is no normal, so there is no model of normalcy to hold a child up against. We all have conditions. We are all imperfect, and in this lies our perfection. So from a totally "normal" hemo who hopes to one day live free of the perception that I am less, please challenge yourselves to no longer see us as less. See us as more. See us as normal.

Or I'll stick you."

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.

Silas and His Placenta (September 27, 2011)

Matt took these beautiful pictures after he got home from running the cord blood to the lab.  We were in the herb bath, and it was at least 2 or 3 hours after the birth.  

Our hematologist was worried that he may have received too much blood.  So, the next morning we took him in for a head ultrasound.  He slept through it and the results were normal.  One great thing about physiological cord clamping as opposed to delayed cord clamping is that the baby doesn't just receive more blood, he/she receives the perfect amount of blood.  See, the cord gives and takes.  The process is designed to regulate the perfect amount of blood for the baby.  So, the baby may actually get a little less blood if you wait longer.  It doesn't clamp off until the baby has all the blood he/she was intended to have, not any more and not any less.  

We did learn some things about physiological cord clamping with a hemophiliac.  After the cord is emptied of blood, the cord naturally clamps itself with the Wharton's Jelly that is produced in the cord.  This usually happens within hours of birth.  We waited until that evening to cut the cord (about 8 hours).  After a while, it ended up filling with blood again and oozing.  So, we had to clamp it off.  Next time, we will wait a full 24 hours before cutting the cord.  This will make sure the cord is well sealed within itself.  

Silas is so healthy and strong and smart.  He is almost 10 months now.  I would definitely do this again.  I love my baby getting the perfect amount of blood meant for them.  

I hope you enjoy the pictures and share them.  I wanted to get these out there because so many people don't get to see the beauty of a baby still connected to their original life support hours after their birth. 

S.t.r.e.n.g.t.h.

The truth is, I can handle it. The task before me is not greater than the strength within me.

For years, I have had an inner voice telling me:

"I'm not good enough. I will never be good enough. I can never reach my goals. I am a total loser. Everyone else has it together, but I always screw things up. Why do I always fail? I don't deserve this job."

I have had this voice in my head and heart for as long as I can remember. It has prevented me from so many things, damaged relationships, destroyed my education, and causes me great pain.

One of the reasons I love birthing so much is that it is one time when I overcome this enemy within me. When I am birthing, these words shine from my soul:

"I am good enough. I am reaching my goal. I am a champion. I can do all things through Christ who strengthens me.* I am doing great. I was made to do this."

The task of birthing my child is so great, I don't let the negative voice ever have the microphone. EVER. My child needs me, and I can do this.

I was recently reading over a letter written to me by one of the dearest friends I've ever had. She wrote in response to a conversation where I shared my discouragement with her. She told me she loved me and reminded me of Elijah's birth. Eli's birth was and is still the most spiritual birth I've ever experienced. You can read the whole story HERE. Here's an excerpt:

The contractions were so intense. I tried a little push with one contraction. No, it wasn't time yet, but I could tell that this was going to be harder than Ana's birth. I thought, "I CAN'T DO THIS". At this time, God impressed on my heart not to speak and claim those words of defeat, but instead to call out to Him. It was between contractions. Everyone was totally quiet. I was facing the wall and couldn't see anyone in front of me. It was just God and me and my baby. I prayed out loud, "Father, thank You for giving us this baby. Thank you that he's coming today. 'I can do all things through Christ Who strengthens me.*' Thank You, Lord. You bring this baby out. This is all You. Come on, let's go!" After that I was on top of my pain (because my Jesus was carrying me).

Just reading that again brings tears to my eyes. I was so close to God. What has happened to me?

I've always desired to know and understand everything. This makes faith a challenge. Well, here's what I know and understand:

1.  When I try to be successful in my own strength, I fail, I disappoint, I even hurt people to accomplish my goal (i e: yelling).

2.  When I let go, trust Jesus to give me strength, love others, and just steadily keep trying, I am a conqueror and a blessing to my family.

I want live my life like I birth my babies. My family needs me. I can't let let that negative inner voice have the microphone anymore.


"I am good enough. I am reaching my goal. I am a champion. I can do all things through Christ who strengthens me.* I am doing great. I was made to do this."

*Philippians 4:13