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.

"Carters Story" by Jenny Fawcett Ruklic

I've been a part of the hemophilia community now for 4 years.  One of the first things that impressed me was how many parents are the leaders in the hemophilia community.  One of these parents is Jenny Fawcett Ruklic.  It was a journey for her to even admit to herself that her son had a bleeding disorder, but she did.  Now she has an organization that is dedicated to raising funds for research to find a cure for hemophilia.  Recently, she posted her story, "Carter's Story", and I wanted very much to share it with you all.  Thanks, Jenny, for sharing your journey with us.  

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"Carter's Story" by Jenny Fawcett Ruklic:


Over the last few months, I have made so many friends via Facebook, and a lot have joined our Page Carter's Quest for a Cure, Mall in the Hall and Bids for Bruisers. The one thing that I think may be missing is our story. So, here is my rendition of what has inspired me to become the advocate I am for my son.

Jenny and Carter

Carter Stephan Ruklic was born June 12 2008, a beautiful 8lb boy with a beautiful head of dark brown hair.  The labour was interesting. I lost a lot of blood, and it took a really long time for the doctors to stop the bleeding, but I never thought anything of it.  I had a daughter 5 years earlier, and it was the same thing.  Everything went fairly smoothly.  We were released from the hospital the next day and sent home.  2 days later, the community nurse came by the house to do the heel prick and weight check.  All pretty routine until I thought of it later.  Carter`s heel bled for a really long time.  Again, I never thought anything of it.  The nurse took her information and left.

Carter and Cassie

The weeks went by, and I started to feel a little emotional, I think the beginnings of postpartum.  On week 4, we had an appointment to have Carter`s circumcision done.  My husband works crazy hours during the summer.  We own a landscape business.  So, he is working tons.  So, when the appointment came, I thought, "I can do this myself no biggie. . . " (Which, if I can recommend now: Take help when someone offers to go with you to this.)  The procedure was horrible, the most emotional thing I had ever had to go through.  I was crying and was so upset for seeing my son cry that way.

After the procedure was done, we went home.  I picked up my daughter from Aunties house, and we went home to spend the day in the wading pool and running through the sprinkler.  Since Carter was born, I was depressed and sad, and Cassie was missing her Mommy.  So, I thought I would spend the day with her hanging out.  Carter slept all the time anyway. Little did I know that this was the day that would change our lives forever.

When we arrived home, I went to change Carter`s diaper, only to find an entire diaper filled with blood.  I called my sister.  I hadn't gone through this.  I wasn't sure if this was normal.  She had a boy. . . She would know.  Tara told me there shouldn't be blood. . . PANIC. . .  All I could think was that the doctor ruined my son.  I called the doctor's office. He told me to go to the Children's Hospital.  I'm sure at that point he kinda knew, but nothing was said.  So, I called the husband, asked him to meet me there. Cassie, Carter, and I were on our way to change our Lives.

Jenny and Carter

We arrived at the hospital, and they took us right away.  They stitched up Carter with 2 stitches, apparently the circumcision split. . . owww, painful.  They asked us to stay for 1 hour just to see if it continued to bleed.  I was confused why would it still bleed.  Are they telling me that they don`t know what they are doing?  Anyway. . .  I sent Will back to work with Cassie.  He was in the middle of building a pond, and there was a storm coming.  So, he left, and I said I would call on my way home.  An hour later they checked and it was still bleeding.  In came the lab to take some blood work. I was so confused as to why they wouldn't let me go home. . . 

Two hours later, the blood work came back, but they are not telling me anything.  My brother in law shows up.  Roger didn't want me to be alone.  I hadn't called Will back yet, and then The doctors come back and say that there was a problem with the blood test, and they needed to run some more.  I tell them, "Fine, but what is going on?"  No one answers me.  Roger calls Will, and my husband is back with me at the hospital.

Around 7 at nite, we have been there for 5 hours. They send a lab tech in to tell us in very broken English that our son has a shortage of factor in his body.  I have no idea what he is talking about.  What is factor?  I just looked at Carter and started crying.  Keep in mind, I was still postpartum.  Finally, the hematologist comes in and tells us that Carter is a moderate hemophiliac. . . SHOCK. . .   He gives us the HTC information and tells us to come for a meeting with everyone on Wednesday, and they will be able to talk about everything and answer any questions.  I then spent the next 48 hours crying and sobbing, asking God why he would do this to Carter and our family.  I just wanted answers.

Jenny, Will, Cassie, and Carter

We went to the clinic and met the entire staff that was going to oversee Carter`s condition.  At this time we are also told that the lab made a mistake, and really Carter is a severe type A and not a moderate. . .  Do these people know what they are doing?  My blood was boiling. . .   They handed us this giant binder filled with really scary things: joint bleeds, muscle bleeds, spontaneous, what. . . , and on and on,  and a bag for the binder.  I felt like we were just given a prize for being the 100th customer.  lol

We went home, and I took the binder and bag and put it under my bed, cause as a child that is where the monsters go.  I spent the next 6 months in a state of depression.  My test came back.  I have 32% factor in my body.  It explains all the bleeding episodes as a child, and knee and ankle problems.  I also had Carter retested. . . denial.  So, 6 months went by, and I didn't want to talk about it or really acknowledge it until Carter had his first bleed:  rolled over on a toy and bruised his back right on kidney area.  So, I started to cry.  Then, all of a sudden, I stopped, looked at Carter, smiled and said, "Mom's got u".  I ran to our bedroom, and got the binder from under the bed.  The monster was looking me in the face, and I needed to help my son.  So, I took a deep breath and did what I had to: admitted that my son has hemophilia.

After that day, I have hit the ground running.  I engulfed myself with information.  We attended the society events and I even went to a women's weekend for women with bleeding disorders.  I met people and talked to everyone I knew about Hemophilia.

"Carter's Quest" Bottle Drop

2 years later, our lives have changed so much.  My son is an amazing little boy and normal.  We are joint bleed free, 2 muscle bleeds, and numerous soft tissue bleeds and head injuries.  He wears a helmet at times and knee pads.  I have managed to train in giving my son his infusions at home, no port, I find the vein 3 times out of 5.  I joined the board for the Southern Alberta Chapter of the Hemophilia Society.  We attend The Parents Empowering Parents weekend, which, if anyone has the opportunity to do, do it.  My husband and I are not anything special, but we love our kids and Carter is no exception.  Aside from the underlining condition, he is very normal.  He loves to cuddle, he loves to jump, and he gets hurt. . . 

I can`t change what we are going through, and I can`t take away the pain that Carter may go through in his life, but I can be his strength.  I can be here to tell him that he is special.  God chose us to be the ambassador to his needs.  I will do everything in my power to raise Carter and Cassie as I would any other children: with morals, strength and courage.  I am strong today because of my children and not in spite of them.

Over the last little while, I have met some extraordinary people, and I will cherish their friendship through Facebook.  I love all my hemophilia friends.  Thanks for being here to help guide my way.

Love to all. . . 

---------->  Click here to visit the Ruklic's website <----------

You may be wondering. . .

Silas - 1 month old

My sister, Julie, called me yesterday and wanted to know what would be happening with Silas now that we know he has hemophilia.  She asked some really good questions, and I thought some of you may be wondering about some things too. 

Q:  Is Silas getting bruises or bleeds yet?
A:  No.  Silas has no bruises.  Some of you may remember that Eli didn't get any bruises until those 2 hematomas showed up when he was 4 months old.  It is normal for hemophiliacs to have bruises (most always hematomas) all over just from normal life when they get more mobile.  These "superficial" bleeds do not need to be treated with factor, but bruising on a joint needs to be watched carefully as it may go into the joint. 

Q:  Is there ever any difference in severity levels?
A:  There are different levels of severity between hemophiliacs, but not within the same family.  My gene mutation is called 22 inversion.  That gene mutation is always severe hemophilia A.  Ana is a carrier like I am.  She bruises more easily, but she and I have another X that makes up for the hemo X.  Eli and Silas do not have another X.  So, they have severe hemophilia A, which means their bodies make <1% of clotting factor 8. 

Q:  When will he need to get factor?
A:  For the first year or year and a half of Silas's life, he will be receiving factor as needed.  For Eli, the first year included soft tissue bleeds in his cheeks (both sets ;o)  ) and worrisome head bumps (none turned out to be a head bleed). 

Q:  Will he be getting a port? and when?
A:  A port is not always a necessity; it is a choice.  We chose to get a port for Eli because we wanted to preserve his veins, and have an easy access in case of an emergency and a vein would be hard to find (dehydration, etc.)  We will probably get a port for Silas since it has worked out so well for Eli, but we will be making that final decision later.  He would get a port when he needs to begin prophylaxis.

Q:  When will he start prophylaxis?
A:  He will begin "prophy" when he is 18 months old or when he gets his first joint bleed.  Whichever happens first.

Q:  Are we doing anything extra to prevent bruises and bleeds?
A:  Yes.  He will start wearing a comfy cap when he starts spending more time on the floor (for 4 obvious reasons ;o)  ).  We bought a sleepy wrap because it is stronger and softer on him than a Maya Wrap or Moby Wrap.  We were not planning on letting him use the jumperoo, but some of my online hemo mom friends told me that they did not have any problems with the jumperoo at all and in fact, it helped their boys' legs get stronger.  Another mom suggested a product called Hugga-Bebe.  It is extra padding made for jumperoos and exersaucers.  It looks excellent, and Matt and I are looking into getting one and trying the jumperoo.  We will use knee pads and elbow pads to protect his joints, and pad his clothing.  By the way, an excellent company that makes padded clothing is Bruz Wear.  We have one pair of pants from them, and they're adorable!


I added a few more questions than Julie asked, but you may even have more.  Please ask anything in the comments section below.  We love to help people gain a better understanding of hemophilia.  Sometimes Blogger doesn't let people comment.  If that happens to you, let me know.  You can comment on facebook or email me at bubblewrappedbirth@yahoo.com

Little Hemos are Little Stinkers Too!!

I am dying to get Silas's birth story written and video edited, but until then, here's a funny little story that happened this week:

A couple days ago, the kids were playing in the backyard.  Eli tripped and fell.  He got a little scrape that didn't even bleed, and I cleaned it up and bandaged it.  Then, I put him down to go back outside.  He wouldn't stand on that leg.  He was having a knee bleed.  So, I set up and gave him some factor, and his older brother and sister (Isaiah and Ana) made him a little bed on the couch and got a movie playing for him.  That night, I made a little bed for him on my floor so he would stay off of his knee during the night.

Eli and his new baby brother, Silas

Yesterday, I was still keeping him off of it.  As all of you with hemophilia in the family know, this gets pretty boring very quickly for a little guy!  Last night, I put him up on my bed while I was taking care of the other kids.  I said, "You can stay here, and when it's time for bed, I'll tuck you in (in the little bed on my floor)."  "Ok!" he said with a smile. 

After a short while, I went back to check on him.  He and his little brother, Malakai were jumping and dancing all over the bed!  Eli was watching himself in the mirror and singing, "You have to stay off your knee.  Off your knee.  Off your knee!"  As soon as he saw me, he dropped to the bed.  I could not say a word.  I just looked at him (who was looking at me with a very guilty face), and walked back to the living room.  I told my mom what happened and we both just cracked up! 

This morning at breakfast, I told the kids what he did, and everybody laughed.  Little stinker!!!