Bubble Wrapped Birth

Our Sixth Birth - Evangeline Daisy Part 1: The Pink Sweater Set STRIKE!

2014-01-18T13:05:00.000-06:00

The PSS Strike Begins!

Oh my goodness. I thought she would never come. I thought maybe my body forgot what to do this time. She was taking --s-o- -l-o-n-g--!! I assumed she would be born early. Last 2 babies were 2 days before their EDDs. This was my sixth birth. Surely that meant I'd have her between 39 and 40 weeks!

My sweet Mama with Ana

NOPE.

39 weeks came and went.

40 weeks came and went.

My best birthie friend made a special trip to see me. She encouraged me, made me take a hot shower, massaged my feet and calves (OUCH!!). That's what would make her come, right?!

NOPE.

Grama and Silas were buddies. They are discussing
their chocolate milk he

My mom and "Grama" (97.5 years old at the time and came very close to passing away just a couple weeks before) traveled down from Michigan to be here for me. Surely that's all I needed. She'll come now!

NOPE.

Matt starts school on Monday! Surely she'll be born by then!

NOPE.

Still great with child, I sent Matt off to school on Monday morning.

41 weeks came and went. It was then when my Grama began her Pink Sweater Set Strike. She decided that she would wear her pink sweater set to let the baby know it was okay to come now. She refused to wear anything else. My mom had to wash it at night and have it ready for her in the morning on Wednesday. . .

and Thursday. . .

and Friday. . .

and Saturday.

I got to go the The Renaissance Festival that Saturday. That was an unexpected surprise. My mom and my pink-sweater-set-wearing Grama sent us off to the faire. I got to hang out with my gypsies, and I got the most gorgeous henna you'll ever see from my friend and favorite gypsy of all: Raven (Fox Moon Henna).

I just needed some belly henna therapy. I'll have her tomorrow, right???

NOPE.

While Mom and Grama (you guessed it, in her pink sweater set) stayed home; Matt, the kids, and I went to church 2 days before I would hit 42 weeks. I had accepted the fact that I would be pregnant F.O.R.E.V.E.R.

Then, the next day. . .

And my Grama's pink sweatered arms were finally filled with her little namesake, Evangeline Daisy:

(Details in next post!)

Written 5 days before my baby was born at 42 weeks

2013-12-10T22:11:00.000-06:00

I can't believe I haven't written since April! So much has been on my heart, but I couldn't write about it. What is on my heart now, I must write about because as soon as I have this baby, I will certainly forget most of it.

I am 41 weeks and almost 2 days along with baby #6. I am healthy. She is healthy. We've already named her Evangeline. My mom is here. My Grandma ("Grama") is here. One of my best friends is in town, and is able to come support me for this birth. I have a loving supportive husband. Our older 5 children are so precious and are very eager to welcome their newest sister. I have a great church, midwife, and my closest friend at the church is my midwife's assistant. I have so much to be happy about. So, why do I feel like this?

Today, I recognized it. This feels like postpartum depression before I'm postpartum.

The weekend before Evangeline's birth, my friend
gave me this beautiful daffodil henna.

Our last 2 babies were born 2 days before their due dates. That and the fact that this is my 6th birth made me assume this baby would be born right around or before her due date. I won't make that mistake again! My EDD (estimated due date) was August 13th. Since I found out that I was pregnant, I wanted so badly to have her on my little brother's birthday (August 5th). That day came and went. I was disappointed. Then, my older brother reminded me that my nephew's birthday was on the 10th. Oh this is it!!! I can give him a special little birthday buddy! . . . No. That day came and went. I was so disappointed. Well, one of my best friends' birthday was just 5 days later on the 15th. No birth. . . Ugh! The biggest stress on me was that my husband was going back to nursing school on the 19th. I just had to have her by then! But, no. I sent him off to class. . . still pregnant. Everyday seems to last a week. I get contractions. Then, they stop. I walk 2 or 3 times a day. Nothing. What is wrong with me?! I know my body successfully got 5 babies out before. So, surely this one will come out eventually?!

24 Weeks and No Midwife

2013-04-22T10:30:00.000-05:00

I haven't felt like a good example for BWB lately. It's not that I am behaving recklessly or carelessly. It's just that I have no professional caregiver right now, and I would never recommend that to any of my followers. It's complicated. Matt and I are keeping track of lots of things at home: blood pressure, blood sugar, oxygen, pulse, heart sounds, respiratory, fundal height, swelling (none at all), and urinalysis. We can't hear Evangeline's heart rate on his stethoscope yet, and plan to get a fetoscope soon. Her movements get more frequent and stronger everyday, though. I need to do better on my diet and water intake as usual. I eat so slowly and because there are so many other things pressing on me, I don't always eat as much as I should. I'm working on it. My weight gain is good. I am 24 weeks along right now.

We've been in this position before. When I was pregnant with Malakai, we were in a huge transition that was physically and emotionally stressful. We ended up moving from CA to NY in my 3rd trimester, and decided on a midwife after we arrived. Then, she couldn't help us with a home birth. So, I had to fight for the birth I wanted in the hospital. It worked. Malakai was the first water birth in that hospital, and it was nearly unattended (I say this as a good thing)! It is good for me to reflect on that because it reminds me of how God has taken care of us in the past, and I can trust He will take care of us again this time. That being said, I still firmly believe that his birth would've been handled better at home. He had a meconium issue that you can see in the video below.
At home, we would've suctioned and if he needed breaths, we have a warm tray (for a warm flat surface) ready right there so that he wouldn't have had to leave me at all and we wouldn't have had to cut his cord. When a baby isn't breathing, he especially needs all the oxygen from his cord blood. However, we were in the hospital. So, they weren't set up to handle things like that. I can't really complain as many many things were handled the way we wanted and they didn't give me much trouble at all. We had zero separation, he slept with me and never in the crib thing, and when they were supposed to have him in the crib while we were being transported from delivery to recovery, they supported my decision to carry Malakai skin to skin inside my gown under blankets. It's cold in the hospital!! All things considered, we have a lot to be thankful for with our hospital birth experience.

A homebirth midwife such as a CPM (Certified Professional Midwife) is my preference of caregiver. I personally believe that CPMs are better trained in the natural birthing process, and how to most effectively care for complications without the restraints of hospital protocols. The care they provide prevents most complications in the first place. On the other hand, they are skilled to know when things are not safe to stay home and when to transport to the nearest hospital. They are passionate about what they do, and are not motivated by money or time (There are exceptions, of course.), but rather are motivated to provide customized care to mom and baby/babies. Of course, I would never argue that CPMs are the only ones that provide this level of care. I just feel like I have the best chance of getting the care I want, if I choose a midwife such as a CPM.

Because of the ridiculous legal situation with CPMs in our area, I can't share any of the details you may be wondering about. I will say that I will continue to take care of myself, improve my diet and water intake, and we will plan Evangeline's bubble wrapped birth as soon as we can. There are some options we are considering. I hate that I can't just be open and share all the details with you. Please just pray for wisdom in these decisions that need to be made very soon. Please pray that the best midwife for this birth will be available and we will be able to relax and just enjoy the next few months before Evangeline's birth.

Thank you so much for your support. I know that there are many BWB mamas who would make very different choices than I am right now. I completely respect that, and I hope you can do the same for me in return.

Home Birth, Midwives, and The Law

2013-04-03T23:18:00.000-05:00

Silas in our herb bath still attached to his placenta (in a bowl next to him)

When you birth at home (assuming you have a great midwife), the focus is what is in the best interest of you and the baby, no strings attached. At a hospital, even if you have excellent care, there are often hospital protocols and impatient medical personnel that you must choose to appease or fight. I've had a great hospital birth, but even so, my midwife had to deal with a bunch of junk in the hallway to fight for my desires instead of just focusing on me and the baby. There were things that happened to Malakai that we did not want, but had to because the hospital said so: eye goop, vitamin k, ridiculous hearing test, not going home when we wanted to, etc. At the hospital, the baby belongs to the hospital. At home, we can just be a family. Having a homebirth is not about having a fun or amazing birth experience for the mom. It is a choice we make because we believe that is where our baby can have the safest most gentle birth without being cumbered about with much hospital protocols. Yes, complications can arise, but they don't happen as much at home. Unnecessary interventions (often because of hospital protocols or impatient medical personnel) CAUSE complications that require more interventions. The most common are inductions, and timing labor and delivery to the extent that they do. There are so many more, but most women don't even know they are wrong because they've never been taught otherwise.

Malakai on the scale after his pretty amazing hospital birth.
It makes me sad that all his beautiful vernix is gone here.
He was covered with it when he was born!

Certified professional midwives in states such as Indiana, practice "underground". They must if they are going to help women who are having homebirths. They can be extensively trained and certified, but the state simply does not allow them to obtain a license. This legal situation is wrong, and those who act against it do so because they believe they are doing what is right in spite of the law. This is much like how many people would respond to an anti-gun law. I can tell you without a doubt that there would be countless people who would refuse to bend to that law and would not allow the government to disarm them. Another example would be if it became illegal to carry a Bible or meet as a church. Christians would then have to make a choice to obey the law or continue to follow their beliefs in spite of it.

In the case of Carol Velasquez, the deputy prosecutor claims that the issue is with illegally administering prescription drugs. Those are the charges against Carol. If Carol was carrying the drugs she is accused of carrying, she is in good company. It would be very hard to find a midwife who doesn't carry Pitocin (for example). These midwives are simply arming themselves for any possible complication that may arise and the natural remedies are found to be insufficient. Homebirth midwives should have the legal safety to care for their clients the best they can, but that is not the case at this time. So, they give their clients the very best care while putting themselves on the line.

What needs to happen is that people need to speak up on the issue of homebirth freedom. Midwives need to have the freedom to provide optimal care without the threat of the nightmare Carol Velasquez is going through right now.

Honestly, my husband put it in much better words than I did:

"Here is the thing, it is not a simple black and white issue. Is it technically illegal for a midwife to administer drugs such as Pitocin? I would have to answer yes. However, in order for midwives to be able to give excellent care to their clients and avoid certain complications they NEED to be able to use these drugs. The real problem is that it SHOULD be legal for CPMs to be able to use these drugs. By not allowing them to use them we are forcing midwives to either choose to compromise their clients care by forcing them to wait until they get to the hospital to receive treatment which in some cases may be too late when it could have been resolved easily at home by the midwife or take the risk because they are more concerned about the welfare of the baby and mother over the governing legislative body. Most midwives will choose the latter. It really is no different than a missionary going into another country where Christianity is outlawed, and under the pretense of being an English teacher, using that as a way to get into the country to teach them about Jesus. As Christians, we know it is TECHNICALLY illegal for them to teach Jesus and carry/distribute Bibles, but yet we encourage them, support them, pray for them, and fight for them if they get caught, because we believe it is the right thing regardless of what a governing body has declared. The same principle is true in this situation. The problem lies in the legislation, and I think some serious changes need to made at that level so midwives are not forced to make the sacrifices they do for the good of their clients."

~Matt Reeves

Support Carol Velasquez CPM!

2013-03-31T00:35:00.000-05:00

BWB family, I am posting this link hoping that some of you would be able to join me to support Carol Velasquez. Carol is a certified professional midwife who has over 20 years experience providing optimal care for women, babies, and families. She is a dear friend to me and my family. ~Sarah

PLEASE READ:

"On March 28th, 2013 Carol Velasquez, CPM was indicted by a grand jury for practicing midwifery during her time in Indianapolis. Carol is a Certified Professional Midwife with over 20 years experience attending births. The care that Carol provided her clients was unparalleled by the Obstetric community and hospitals in Indiana. The women she attended received prenatal care according to the same schedule and yet she spent an average of 700% more time with us! This was acheived by scheduling 2 hour long appointments (as opposed to the 15 minutes OB/GYN's allot for patients.) She provided women with detailed nutritional counseling, recommended supplements according to the individual needs of the mother, and practical as well as emotional support to women facing difficult circumstances (myself included). Because the State of Indiana refuses to license CPM's Carol put her freedom on the line for each of the families she helped. Let's show our support for this brave woman on Tuesday morning as she surrenders herself to the court!"

*I am going to try my best to be there. I may have all my children with me. If you are in or near Indianapolis and want to help, please meet me at the courthouse on Tuesday morning (4/2/13)! If you can't be there, please share this event in as many homebirth friendly circles as you can, and please please pray. ~Sarah

CLICK HERE TO VIEW THE EVENT ON FACEBOOK

Thank you all so much for reading this blog. This is an unusual post calling you to action, but I wouldn't ask you if it wasn't important.

-----> PLEASE SEE UPDATED POST HERE!

A Letter to My Uncle Patrick

2013-03-18T12:27:00.000-05:00

70 years ago now, my sweet grandma carried a precious baby boy in her womb. He was her first baby. Grandma and Grandpa had been married for a couple years, and I can just imagine the dreamy excitement they shared about their first child.

Then, on St. Patrick's Day, Grandma went into premature labor. I believe she was in her 2nd trimester. They called the doctor, but things happened too quickly, and there was nothing they could do to save him.

He passed away before his birth. Grandma saw that he was a boy. Things were so different back then. They never named him, and Grandma was never able to properly grieve. Because he was born on St Patrick's Day, my mom started referring to him as Patrick. If I could send a message to my dear Uncle Patrick in heaven, this is what I would say:

_______________________________________________________________

Dear Uncle Patrick,

You may or may not know who I am, but I know you. You had a very short life, but your world was my grandma. That's a pretty sweet world. All you knew in life was the warmth and love of your mother's womb. Then, you suddenly went from her womb to the warm loving arms of Jesus. You stayed in her heart, though. Your life has been celebrated for all these years. Since your birth, Grandma gave birth to one more boy and four girls. You are also uncle to 13 nieces and nephews, and I am carrying your 37th great niece/nephew! She's a girl. We're naming her Evangeline Emma.

Our first baby didn't make it to our arms either. I don't know if I was carrying a girl or a boy, but I felt like it was a girl, and we named her Faith. I immediately felt an even stronger bond with both my grandmothers when I was going through that. They had both lost babies. They gave me comfort and strength during that dark time. Have you met Faith? I think about what she's doing up in heaven often. I bet you're a really fun uncle to her.

We all miss you. You are so loved. I am so glad God blessed this family with you.

Your loving niece,

Sarah

_____________________________________________________________

~ Here's some pictures of Grandma when she was a young mom of a bunch of little ones. ~

I love her style in this one. She's the cutie on the left.

8 Things I've Learned about Love

2013-02-27T22:38:00.000-06:00

I haven't been married for a really long time, but Matt and I have been married for 10 1/2 years, and we are still happy. In this first decade of marriage, I've learned some things about love. I want to share what I've learned with you.

1. A woman needs to be cherished. That's how you won her heart, and that's how you're going to keep her heart.

2. A man needs to be believed in. He is only as good as you think he is. I have seen Matt be strong and fearless when I believe in him, push him toward his dreams and encourage him to reach his goals. I have also seen him wilt and be depressed when I cut him down, discourage his dreams, and criticize his goals.

3. Love is work. If it were easy, it wouldn't really be love. Just like a birthing mother who works hard to receive the amazing reward of her precious baby, love must work hard through the difficult times. Coming through those hard times stronger is a precious reward and makes all the work worth it.

4. Fighting is sometimes good. For me, our discussions need to reach an emotional level on both sides in order for them to inspire a change of heart in me.

5. If your children see/hear you fighting, make sure they see you make things right with each other.

6. Dates are essential. I am typing these words desperate for a date with Matt. I need time with him. I don't need him to buy me anything. I don't care if all we do is go hang out at the library or walk around the mall. I just need him away from the kids, away from the house, away from studying and work and clinicals and everything. I just need him to focus on me, and me to focus on him without any distractions. It's probably really good to have to wait a little for it. We need to crave the time together instead of just taking it for granted.

7. I need God. When things are hard, too hard to have a productive discussion with Matt, I need to run to my Jesus. I can let it all out to him, cry, scream, yell, ask why. He already sees it all in my heart. All I'm doing is being honest on the outside about what He sees on the inside. I am not just crying, screaming, yelling and asking why because I'm angry, then stomping away. I am there for help. I am there for answers. I wait. I calm down. I rest. Then, I can listen. I find His answers in His Word, His love letter to me. I read His promises to me and find hope to get up and go on.

8. Love is worth it.

~ I love you, Matt Reeves. ~

How to talk to your older child about your younger child with hemophilia

2013-02-22T13:33:00.001-06:00

Yesterday, I wrote a post about what I wish I would've said to our oldest child when our 3rd was diagnosed with hemophilia. It was a very personal post from my heart, and I hope it might help another new parent who may not know what to say. Today's post is straight to you, Mom or Dad. I wanted to directly share what I've learned about talking to children about hemophilia. I hope this helps you the way I needed to be helped back then.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Here are 5 keys to having a successful talk with your child about hemophilia:

1. Explain the facts in simple terms.
2. Build their confidence as a great big brother/sister.
3. Verbally accept responsibility as mom/dad to handle whatever hemophilia dishes out.
4. Give them age appropriate jobs pertaining to protecting and taking care of their baby brother/sister.
5. End the conversation in a way that empowers and encourages your child. Hemophilia will be a big part of his/her life too, and he/she needs you to believe in their ability to handle his/her role.

Be careful. When you are new to hemophilia (when you are new to anything, really) it can be so scary. You may unintentionally put way too much pressure on your older child because you are so afraid of your younger child getting hurt. When the baby gets hurt, take a minute to breathe. Calm down. It will be okay. When you are ready, calmly and respectfully ask the older child what happened. Do not speak down to them or yell at them. They need to be able to trust you to tell you what happened without fear. Treat your older child as an important part of the team.

Things to NEVER say to your child:

1. Yell or scream about anything. It never ever helps!
2. "What were you thinking? You could have given him a bleed! Do you want him to have to go to the hospital and have to get his medicine for a bleed?!"
3. "Don't hit his head! He could get a bleed in his brain and even die!"

The idea is to empower your child, not heap shame on your child. He/she will carry that shame for years and even life if they don't heal from it. Shame will not help them be a better sibling or a better person. Don't put the heavy burden of bleeds/death on his/her little shoulders. Your child needs to learn how to be kind and treat others with respect, hemophiliac or not. You should teach your children about what a bleed is and what factor does, but hurling the threat of a bleed at your little one in the heat of a crisis will only make things worse.

Great things to say to your child:

1. "Please tell me what happened."; "Thank you so much for telling me."
2. "Remember to be very careful with his/her joints."
3. "Be extra careful with his/her head."
4. "I know you didn't want to hurt your little brother/sister." -or- "I know you are sorry for what happened." -or- "You know not to treat people like that. Please go make things right with your brother/sister right away."
5. "It's going to be okay."
6. "I love you."

Mom or Dad, this is an intimidating and sometimes difficult journey, but you will learn quickly. Things get so much easier when you start treating your child at home. When you are empowered, your children get empowered. Love your children. Teach them what is right. You can do this and you are ALL on your way to becoming experts. It's going to be okay.

What I wish I had known to say to our oldest child without hemophilia when our 3rd was diagnosed:

2013-02-21T17:53:00.001-06:00

Eli and Isaiah around the time Eli was diagnosed
with severe hemophilia (Spring 2008)

"Hey, buddy. I want to talk to you about your baby brother. Daddy and I just found out that he has something called hemophilia. I don't know a lot about hemophilia yet, but I am going to read some books and talk to some people who do know a lot about it so I can learn. You will learn a lot about it too.

"Sometimes, hemophilia might seem a little scary. See, when Eli gets a boo boo or bumps his head too hard, we might have to take him in to the hospital so they can give him his medicine. He may even get hurt when you two are just playing.

I want you to know that that's just how hemophilia is and you don't need to worry.

"Treat him the way you know you should treat anyone. Remember:
-No hitting with your hands or anything in your hands.
-No kicking.
-No throwing toys at anyone unless you are playing catch with something soft.

"As Eli grows up, you will be silly boys together, have pretend sword fights, run, and play super heroes. Don't let his hemophilia scare you. Mommy and Daddy will take good care of you all. Eli is so blessed to have you as his big brother. You are already teaching him so many wonderful things!

"I have one new job for you, okay? If Eli gets hurt and you see what happened, it is really important that you tell Mommy or Daddy or another grown-up exactly what happened. You need to be really brave and tell us even if YOU hurt him. Don't worry about getting in trouble. We will be very thankful to you for telling us the truth. Then, you can help take care of him.

Eli and Isaiah August 2012

"Here's some great things you can do to help:
-Go get an ice pack from the freezer.
-Put on one of his favorite shows to cheer him up.
-Get him his favorite toy or blanket.

"I know this is a lot to understand right now. You can always ask me or Daddy anything you want to know. If you ever feel sad or angry, you can always tell us and we will listen. You are a very special little boy, and I am so glad Eli has you."

A Special Prophy for Nursing Class

2013-02-19T19:22:00.000-06:00

Eli's reward for being so brave

Today, Eli let Matt give him prophy in front of his nursing class (37 students + 1 teacher). When Matt first asked him if he'd like to do that, Eli was very excited! He was excited this morning before we went. Then, when we got there, we discovered that we forgot the numbing cream. We finally got him to agree to do it for a special surprise afterwards. Then he saw how many people were in the class and hid in the next room while Matt was setting up. He didn't realize there would be so many people watching. He got pretty uneasy, and wanted to go home. He hid behind me when we came in the room. Isaiah was right by his side the whole time, encouraging him and being a brother. When it was time, I sat him up on the desk. He was still uneasy and wanted to leave, but he sat still. The class was so sweet. They did all they could to make him more comfortable. They gave him candy, were calm and encouraging to him. It worked. :) He stuck his chest out and Matt rubbed on the chloroprep. Then, he kept his chest big and turned his head to the side to be sure not to breathe on it. He kept his chest big when Matt put the needle in. He is used to numbing cream. One of the students asked him if it hurt, and he nodded yes, but stayed focused and still. Matt explained each step, talked about hemophilia, and emphasized the importance of sterility during the treatment. I was able to say a few things too. Eli didn't want to say anything, but he was free to speak if he'd wanted to speak. I was encouraged that one student asked if they should wear a mask to access ports. After the teacher answered her question, I told her that any effort made by a nurse to keep a port safe from infection means the world to parents. A mask, extra alcohol swabs, careful sterile/clean technique earns a lot of respect in the eyes of parents, not to mention the obvious benefit of protecting the patient from port infection.

After Matt de-accessed and I was holding pressure with the gauze, many in the class came up to thank Eli and compliment him on how well he did. One girl even gave him some money!

I am very grateful that we had the opportunity to share prophy and our knowledge and experience with ports with the nursing class today. They were very grateful to us too. I am so proud of Eli for being so brave even when he was a little uneasy at first and had to be accessed without numbing cream. I think he helped a room full of nurses be better nurses.

Silence Broken

2013-02-09T18:12:00.000-06:00

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

2013-02-09T14:44:00.000-06:00

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

2012-10-10T03:26:00.000-05:00

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:

2012-10-03T12:17:00.001-05:00

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 +++++

2012-09-16T16:48:00.000-05:00

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)

2012-07-21T12:21:00.000-05:00

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.

2012-07-12T11:28:00.000-05:00

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

Isaiah, #1

2012-06-28T08:02:00.000-05:00

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)

Why Hemophilia Isn't Stopping Us from Having More Children

2012-03-13T09:06:00.000-05:00

Ana 2010

Soon after Matt and I got married, we agreed that we would have as many children as God gave us. We put our faith in God, trust in Jesus and believe the Bible. God always refers to children as a positive thing: gift, blessing, treasure, reward, inheritance, etc. We were both uncomfortable with any form of birth control. It just didn't seem right to us to try to prevent a possible gift, blessing, treasure, reward, or inheritance that God might have for us.

So, we were very delighted to find out we were expecting our first little blessing right before Thanksgiving, just 5 months after our wedding. Then, we were filled with grief when we buried that sweet baby just a month later. I have given birth to 5 healthy babies since then, and I can tell you that the pain of miscarriage is the pain of death. The pain of birth is life, and so much easier.

Malakai, Eli, Isaiah, and Ana 2011

God filled our hearts with joy once again when we found out our little Isaiah was on the way. We actually heard his heartbeat on our first baby's due date, an unexpected gift from God. That day would've been very hard otherwise. Then, after Isaiah was a year old, my womb was full again. This time with Ana. Isaiah got in the pool for her birth. I caught her myself. So priceless. Then, our not so little Elijah came (10lbs 14oz!) less than 2 years later. His birth was the most spiritual I've ever experienced. It gives me chills to this day.

It was when Eli was 4 months old that we were introduced to the world of hemophilia. He had a couple hematomas along his waistline. Blood tests showed that he had less than 1% of factor 8, severe hemophilia A. A few months after that, I was tested. I thought he probably had a spontaneous mutation. I didn't have any family history of hemophilia at all. Well, I remember getting that call like it was yesterday. The test came back, and I was a carrier. My heart sank. Was this my fault? Could I have more children in good conscience now? What does this mean for my home births? All these questions and more weighed me down immediately.

Our family of 7 with Matt's Mom and Grandma 2011

We reexamined our original decision: We trust that God would give us as many children as we should have, and He would give us the specific children we should have. Had all that changed since hemophilia? The truth was that if it had changed, then we'd never truly believed it.

So, we stuck to our plan. A few months later, we were blessed again. This time, birth planning was a lot different. We chose to get an ultrasound to find out if the baby was a girl or a boy: BOY. Then, we started interviewing midwives. It definitely puts a twist in the interview when you mention, "Oh, by the way, our baby has a 50% chance of having a severe bleeding disorder. . . " It wasn't so easy finding a caregiver this time.

Then, my husband lost his job, and we moved clear across the country from California to New York where he got a new job. Homebirth just wasn't working out this time, but we had a great midwife who had privileges at the Women's and Children's Hospital. I insisted on a water birth to give my baby the most gentle birth I could. They'd never had a water birth, but in the end, they approved my request. We used our pool, and they moved the bed out to make room for it. Malakai was born, making hospital history! His cord blood test came back that he did not have hemophilia.

Malakai and Silas 2012

Malakai is now 2 1/2 years old, and his little brother, Silas was born last September. Silas is 5 1/2 months old now. We were able to have a totally awesome home birth with him, and coordinated with our new (moved again!) HTC to get the cord blood tested. Silas does have severe hemophilia A like his older brother, Eli. He has shown little signs of his hemophilia so far.

Matt and I are very excited to look forward to the future. Our beautiful family is growing, and although they keep us hopping, we just love our little crowd! If God wants us to have more children with hemophilia, then it is what is best for our family. If not, then that's what's best. We choose to trust Him.

Matt and I have lots of friends and family whom we highly respect that do not share our beliefs on childbearing. We believe it is a personal choice for each couple to decide on their own. I know that I may have lost some people when I mentioned God, but I wanted to share our heart with you, and I can't do that without mentioning God.

Anyway, isn't having any child a risk? People who don't carry a genetic disorder are not guaranteed a perfectly "healthy" child every time. Elijah and Silas are just as much a blessing to our family as Isaiah, Ana, and Malakai are. I believe with all my heart that God has a special plan for each one of our children. I believe that everything in their lives is there for that purpose, to make them exactly who they are meant to be. No matter what happens, God always loves us and we can always trust Him.

"Carters Story" by Jenny Fawcett Ruklic

2012-03-09T14:16:00.000-06:00

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 <----------

Meet Craig Wright

2012-03-03T14:01:00.000-06:00

Craig Wright

Over the past few months, I've been learning a lot about a man named Craig Wright. Craig was born in August of 1953. After he was born, he was diagnosed with severe hemophilia when he cut his lip and it wouldn't stop bleeding. He spent a lot of time in the hospital because of his hemophilia and received gallons of blood from numerous donors. Life for a hemophiliac was much harder back then.

Craig grew up on the family farm in Prince Albert, Saskatchewan Canada. At a young age he expressed a desire for farming. He was told that he should give up that dream because a life of farming would be too dangerous for a hemophiliac. That did not stop Craig from following his dream. He grew up to take over the family farm. He married, and he and his beautiful wife were blessed with 3 precious children.

Craig with his family

However, the Wright's lives were turned upside down one day when 32 year old Craig learned that he had contracted AIDS from bad blood. His daughter, Ashley recalls: "I was quite small (maybe 5-7 years old). I remember seeing one (commercial on HIV/AIDS) and saying, 'Hey Dad, that's you, right?' and immediately after running to my room because I thought I would be in trouble for speaking about it. We all knew, it was NOT something you brought up!"

Ashley remembers telling her best friend about her dad's condition. "It was the middle of winter and recess time and I asked her to sit with me on a little snow hill and told her." Her friend didn't understand the reality of the situation, but knew she was sworn to secrecy until Ashley decided to tell others. It was three years later in 6th grade that Ashley decided to share the situation with her classmates. She never imagined that her dad would be laid to rest before she would finish 7th grade.

Craig's daughter, Ashley with her son, Parker

As Ashley shared her memories with me, I was deeply impressed with her parents. Ashley remembers, "They came into the school and did presentations for the class as well as the parents, and I know they had to go through a whole bunch of red tape to even think about discussing such a topic with children. I remember being scared but yet so proud of my dad for standing in front of the class and explaining to them in children terms what was going on in his body and why. Needless to say, the children took it better than the parents. I distinctly remember at the parent info meeting, the parents of the children in my sister's class saying, 'We do not want your daughter playing with our children.' How do you even respond to that?! Being a mom now, I have no idea how they handled that without tears!"

Ashley remembers that her dad missed being in his band. She also remembers the "countless hours and hours he spent on the phone with lawyers and conference calls as well as the many trips to the lawyer's office or the lawyer coming to the house."

Craig was driven by truth and justice. When he was infected with a deadly virus as a result of others' mistakes, he wanted those responsible to be held accountable. He dedicated the remainder of his life to fighting for compensation to the families affected by bad blood and holding the responsible parties accountable. He was deeply involved on "The Krever Commission". This commission fought for better blood screening, safety of blood products, but mostly for the compensation for the affected families of bad blood.

Craig's grandaughter, Charlie

The Globe & Mail June 1, 1996 states,

"The mandate of the Krever inquiry is twofold:

-Determine how and why more than 1,200 hemophiliacs and transfusion recipients contracted between 1980 and 1985 the virus linked to acquired immune deficiency syndrome and why another 12,000 Canadians contracted hepatitis C from blood and blood products between 1980 and 1990;

-Recommend ways to revamp the blood system so a similar disaster is not repeated."

From studying the documents that Ashley sent to me for this post, I learned how the organizations responsible for the bad blood epidemic were quite upset about the Krever commission. They thought that the notices of "potential misconduct" should be quashed because they unfairly stigmatized them.

In 1993, Craig was interviewed by The Leader-Post. He stated, "The knowledge we are getting now is the governments knew in 1982 and didn't act until 1985. The time frame is so bizarre, . . . How do you justify not letting hemophiliacs at the grassroots level know? How can they justify not publicly putting out a news blurb saying: 'Hemophiliacs, be careful,'?"

In the end, Craig was not completely satisfied with what the courts decided the compensation should be, but he was told that it would be another 7 years before it would make it in front of a judge again. Since he knew he wouldn't live long enough to see it go to court again, he agreed with what would be given.

It seemed that as soon as Craig knew that his family would be provided for, his body started shutting down. Then on May 9th, 1996 in a Saskatoon hospital, 42 year old Craig Wright passed away.

Craig's grandson, Parker

I am so inspired by the life and legacy of Craig Wright, and I am so very saddened for his life that was lost. We can all learn from this man's example. From the moment he learned of his hemophilia, he decided that it would not keep him down. Craig lived his life to the fullest. He was loved and respected by his family, friends, and even people from his local and national government. When carelessness led to his contracting the AIDS virus, he did not roll up in a ball and sulk or give up. He let it fan the flames in his heart. He stood up and fought for his family and many others. When AIDS ultimately claimed his life, many honored him.

One of the saddest parts of this story is the grandchildren who never got to meet him. Craig's daughter, Ashley, is brokenhearted that her little ones, will never know their grandfather who was such a hero. No, Charlie and Parker will never look into their grandfather's eyes as they grow up, ride on the tractor with him on the family farm, listen to their grandpa's singing and guitar playing, or hear his stories from his own lips. But, I believe they will know their grandpa. He lives in the hearts and memories of so many people. I believe Charlie and Parker will be inspired by their very special grandpa's legacy. Parker's blood inherited the mutated gene carrying hemophilia, but that blood has a legacy of much love, determination, and strength in it from his grandfather, Craig Wright.

Product Review: SnuggyBub baby wraps

2012-01-20T16:40:00.000-06:00

A couple months ago, I was asked to try out a new baby wrap designed by a mum from London. It's called SnuggyBub. I was delighted, and I've learned a lot about this unique product over the last several weeks.

My first impression was surprise! When I opened up the package, I expected to find a long folded piece of material. Instead, I pulled out a cute little bag with a braided strap. To my amazement, I flipped it inside out and the cute little bag became the pocket on the front of the wrap! The braided strap just hides inside.

When Silas was really little, I didn't love it as much as I do now. He was so tiny (6 lbs at birth, around 7 or 8 lbs when I started using the SnuggyBub). I wanted to have a more stretchy material to hold him close to me. I could never master getting the SnuggyBub snug enough for him. The front part always seemed to be too loose.* Now that he is 13 lbs, I definitely prefer the SnuggyBub over more stretchy wraps. Here's why:

1. The SnuggyBub has a 1 way stretch due to tiny ribs in the material. That means that it fits snugly around the child without pulling down from the weight of the child.

2. The SnuggyBub is very lightweight and is made from 100% cotton. It washes up beautifully.

3. The most fun feature of this wrap is that it flips into itself to make a cute little over the shoulder bag, much nicer than stuffing a wad of long material into the diaper bag!

I would highly recommend this product to someone in the market for a baby wrap. I did not find it ideal for a very small baby*, but as soon as that baby puts on some weight (over 10 lbs / 4.5 kg), it is awesome! I even tried Malakai (2 years old) in it and he fell right asleep! And since the 1 way stretch supports the weight of the child without stretching down lower and lower as you wear it, it is way more comfortable!

*I just discovered why I had a problem getting it right when Silas was so little. I was skipping the step where you pull the access fabric the the front of the crossover pieces. If I'd done that, I bet I would've had no trouble. Now, I need a really little baby to try it with! Here's the great instructional video.

First "Bleed"

2012-01-09T01:19:00.000-06:00

Malakai and Ana (after his repaired haircut!)

Christmas is over. New Years was awesome. We are about to start the chaos of Matt starting nursing school next week. I have a really good plan for our home school. The house is clean. Eli gave Malakai a haircut this weekend, and Silas had his first "bleed". Well, not a BLEED bleed.

I was nursing him and saw a speck in his ear. I thought it was a speck of pepper. I rubbed it out, and switched him to the other side. When he was finished nursing and I picked him up, my arm and the side of his head were bloody. I calmly called Matt and asked him to bring me some gauze. We have plenty on hand thanks to prophy supplies. That tiny little spot wouldn't stop bleeding for maybe an hour. It was not excessive. It just wouldn't stop. "Come on, platelet plug! Do your thing!!" I said. Well, of course it did stop. It wasn't a surprise. We know he has severe hemophilia, but it is real now, not just a diagnosis from a cord blood sample. We have SEEN hemophilia in him now.

Silas with "his" snowman pancake

Like I said, it wasn't a real bleed, nothing that deserved factor or anything, but still, it is not nice to see your baby's face messy with blood. Not even if you know it is "normal" for him. After everything settled down, I was sad and let some tears come to my eyes.

Here we go. . .

Boo-boos

2011-12-03T12:44:00.001-06:00

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.

A Simple Guide to "Bubble Wrapping" Your Birth:

2011-11-21T14:59:00.001-06:00

We put bubble wrap around things that are special to us: special Christmas decorations, fine china, crystal, figurines, and other treasures. There is nothing more special than finding out you are carrying a new life inside your body. You don't want anything to harm your most precious treasure of all: your baby. "Bubble Wrapped Birth" means a birth planned with care to keep your baby safe through the birth process.

But, how?
Here are six key points to planning your own bubble wrapped birth:

1. Be healthy. Making healthy choices and having a healthy diet is the foundation for a safe birth. This link is a good place to start.

2. Know your body. Understand your unique health facts: birth history, factor level, bleeding history, etc.

3. Know your baby. Study fetal development. Understand the impact that prenatal health, gestational weeks, and birth choices make on your baby.

4. Understand birth. Research the natural birth process, what things hinder the process, how to work with your body, how to safely deal with labor pains, and when interventions are truly necessary. Click here for an excellent resource to get you started!!

5. Know your options in your area. Is there a birth center available to you? What options are offered at your local hospital: midwives, water birth, doulas, competent NICU, etc.? Are there good home birth options with competent care and medical backup such as support from your HTC with cord blood testing, etc.? What policies will you have to work with at each birthing location?

6. If you are unsatisfied with the options in your area, work to change them!!