Boo-boos

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

Now, let's talk about boo-boos.

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

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

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

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

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

A Simple Guide to "Bubble Wrapping" Your Birth:

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!!

"Badge of Honor"

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

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

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

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

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

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

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

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

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

 

Jealousy

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

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


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

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

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

"Why Home Birth?" by Stacey Rainer

The following was written by a hemophilia mom who worked as an OB nurse.  With her permission, I have republished it here from where she originally posted it on "cafe' mom" back in June 2007. 

__________________________________________________________________________________

So, someone asked me why I choose home birth, so I decided to write a journal entry to explain it, as I think it's too long for a reply to a previous entry.

First, my birth history. My first three pregnancies were induced because I had high blood pressure. The first was the worst, but the other two were not far behind. I was over 39 weeks each time, so no preemies or anything. I was never sick enough to need meds for my blood pressure. The first two times, I had Pitocin to start my labors. The third time, I did not want it, so I requested to be induced by rupture of membranes. By this point, I had been an OB nurse for a year, so I had a pretty decent working knowledge of the birth process from more than just a participant. During my pregnancy, I began to question circumcision. I talked to several doctors about it in the course of my work, and decided I'd not do it to my children. I had all girls up to this point. After that third baby was born, during my foray into the anti-circ world, I became acquainted with things like not vaccinating your children and home birth. When that child was 9 months old, we made the decision to stop vaccinations. I also decided that my future children would be born at home.

Two years later, I was pregnant again. I could not find a midwife in my new state, Illinois. So, I called a midwife I knew back home in Kansas, and asked her if she would attend my birth. I would travel there at 37 weeks or so, and hang out with my sister until I went into labor. It was all arranged and working well, until 7 weeks along. A sonogram showed twins. I immediately dismissed my home birth plans and while I hoped desperately for a vaginal birth, I knew my chances were slim. I was right. C-section for "unfavorable" position. After that, I'd had it. No matter what happened, I was having a home birth next time. Of course, I still have not found a midwife. Not to be one to wait until I needed, I got on the internet and began searching shortly after my boys were born. Didn't find a midwife, but became acquainted with something else new. Unassisted home birth. This was cool! By this point, I'd been working in OB for 4 years. I felt confident that we could do this. So, two years later, when I was pregnant again, this was the plan. I opted for an unassisted pregnancy as well. I did my own prenatal care. I did finally meet a midwife, just 2 weeks before she was born, but I had already made my plans, so stuck with them. I had a fantastic, 2 1/2 hour birth, in a pool in my family room. It was the most amazing thing ever! I knew then, that I'd never have another baby in the hospital again. So, two years later again (yeah, I know. I have a pattern), when I became pregnant, we didn't even discuss it. We knew we'd be having another unassisted home birth. The time came when labor started, and it was a long, grueling, 52 hour labor. I required a bit of assistance this time. I was ready to throw in the towel and head to the hospital at 50 hours. A midwife friend came over, broke my water and left. Two hours later, I was holding my screaming baby boy.

That's the birth history. Now for the whys of it all. During my career as an RN, I began to see how much stuff is done to women simply because it's what's easiest for the care providers (OB and RN). It's much easier to watch a continuous feed of fetal monitoring at the nurse's desk than it is to hunt down the walking mom every 15 min. to listen and count with a doppler. It's certainly more convenient to break mom's water or give her Pitocin when things are going a bit slower than the OB would like so he can "get that mom delivered" by a decent hour. Those late nights are hard, after all. I began to realize that birth is so much less traumatic both for mom and baby when it's left alone. However, it's nearly impossible for birth to be left alone in the hospital. Everyone's got to get their hands in it, literally. That's not something I want. My first baby was taken to the nursery for the first 6 hours of her life. I needed to rest, you see, because of my blood pressure. It was the longest 6 hours of my life (longer than that labor had been, actually). I hated it. My second was given for adoption. My third, the took her from me, put her in a baby warmer where I could see her. She was messed with, poke with a vit. k needle and a hep b needle. Junk was put into her eyes... she was exhausted by the time I finally got to hold her. She was way too tired to breastfeed. Fortunately, it didn't hamper future attempts and she nursed fine. My twins were taken from me since I had to go to recovery. But, by then, I knew to request no needles, no goop. I wanted them alert when I got them back, so they would nurse and so I could meet them. That was fine. I only had to wait an hour to finally hold my babies. It was better than before, but still not ideal. When my twins were 5 months old, one of them was diagnosed with hemophilia. His blood does not clot properly. So, things like a circumcision, or an intramuscular injection can cause bleeding that won't stop. Thankfully, we'd avoided that. However, the question then became, is it safe to have a home birth when this is a possibility for future children? Well, the next baby was a girl and I knew she was before she was born, so no worries. Then came Ian. There is a 5% risk of bleeding on the brain with vaginal birth. After some reading, I discovered that the risk of this bleeding without the use of instruments to deliver goes down to less than 1%. Well, that's a no brainer. I don't own forceps or a vacuum extractor so there was no concern about an instrument delivery (however much I thought I wanted one by the third day of labor). Well, I knew this baby was a boy, and I knew he had hemophilia. I did not know this through any tests of any kind. I just have a great gut instinct for this kind of thing. Well, he was born, I drew blood from the placenta as we'd arranged, and my husband took it to the clinic for testing. I was right, but my baby was fine. Some would suggest I got lucky. I would say I planned things in such as way as to be sure my baby would be born gently so that there was no risk of bleeding of any kind. Let's talk about risk of bleeding, since this was a question asked of me. Besides that less than 1% risk of brain bleed jumping to 5% in the hospital, there are many other opportunities for a hospital birth to actually cause bleeding. Artificial rupture of membranes - bleeding from the big scrape that is now on the scalp. How about that deep suctioning they do after birth? GI bleed. Rough handling, flicking of the feet, vigorously rubbing the back all to stimulate crying - muscle bleeds. IM injections - muscle bleeds. Of course, there is ample opportunity in all of this for big ugly bruising to be left behind by uneducated staff. This all just addresses the hemophilia. But why home birth at all?

Ultimately, I have a very strong faith in my Maker and the way He created me. I am a strong, healthy woman. My body was designed to conceive, grow, carry and finally birth a baby all on it's own. I also believe that a vast majority of fetal distress and failure to progress cases are caused by hospital intervention. The use of continuous fetal monitoring has NOT improved outcomes when it comes to fetal mortality. It has, however, increased the incidence of c-sections 3 fold. Pitocin has become a drug of convenience rather than emergencies. Docs going out of town? No problem We'll induce before she goes. Mom is only here to help you for one more week? Ok. Let's induce. You're due tomorrow? Well, let's just get you scheduled. Something like 90% of all inductions are not medically necessary. Labor's going to slow? We'll augment with Pit. Why? Oh, just to get it over and done with for you. Sheesh! No one even talks about the RISKS!! Yes! That's right! There are RISKS to this drug! In fact, it's not even approved by the FDA to use for augmentation! But, who needs to follow labels? Let's use this great new blood pressure drug, Cytotec to stimulate labor! So what if it causes ruptured uteruses? That doesn't happen to every one. Think of all the time that can be saved by getting labor started on a time table. Obstetrics is the only medical specialty that is not evidenced based. It's tradition based. There have been multiple studies that have proven the old ways are wrong but it's still going on! Why? Why is there such a need to manage something that works just fine on it's own? Pregnancy is not a disease. It's not a sickness. It's not an emergency waiting to happen. It's a normal function of life. We go to the doctor when normal functions aren't happening normally. Your hearts not working right? See a cardiologist. Blood not working right, as in our family? See a hematologist. Birth IS working right? See an OB anyway. Do you get it? Do you understand why someone might choose to flee as far and as fast as possible? Because what I DON'T get, is the American practice of obstetrics. I don't get it, and I won't have it. Home, where there is peace and gentleness surrounding the entrance of my baby into this world. There's enough violence throughout life. It doesn't need to start with the first breath of life.

"He has it." I said to my midwife. . .

It was evening.  Matt had taken the cord blood up to the hospital, and had been home for a few hours.  We'd taken our herb bath and were now resting and breastfeeding in bed.  Now, Matt was on the phone with our hemotologist getting the results of the blood test.  He was on the phone for a long time in the next room.  That was my first clue.  Then, I heard him say, "No, we haven't seen any bruising at all." 

"He has it."  I said to my midwife. 

Matt got off the phone and confirmed that I was right.  The first thing I felt was a heaviness.  Here's this perfect baby boy nursing in my arms, and now we know that he has a severe bleeding disorder.  Of course, I was not shocked or suprised.  We knew he had a 50% chance of inheriting my gene mutation.  However, knowing it's a possibility and finding out it's a fact are 2 very different things.  I didn't cry.  I just felt some heaviness in my heart as I thought about what was ahead for this sweet baby. 

Our midwife left.  Then, Matt called Eli into the room.  Both of us wanted to tell him first.  When he heard that Silas had hemophilia just like he did, his little face softened in a way that I'd not seen before.  He moved over to Silas, and warmly said, "Aw, Silas!".  He had the most loving smile on his face. 

"Do you want to hold him?"  I asked.  He did, and climbed up on the bed to hold his new baby brother. 

Perhaps even sweeter than Eli's reaction was Isaiah's.  When we told him that Silas had hemophilia, his face lit up with excitement.  "Really?!"  he exclaimed, and he jumped up and ran to Eli.  (He was unaware that Eli already knew, and ran out before we could tell him.)  "Eli, guess what?!  You have a little buddy now.  Silas has hemophilia just like you!"

Of course, Silas didn't have to have hemophilia to be Eli's buddy, but we knew what he meant.  It was so precious!

I had my cry later that week when I checked facebook and read the tragic story of a little boy with hemophilia in the Philippines who recently died because he couldn't get the factor he needed so badly.  It was too much!  "That's our boys, honey! If we ever couldn't get factor, this could be them!"  I cried to Matt.  I really cried.  It's been a while since I cried that hard.  We talked for a while.  I asked Matt, "Is it ever hard for you?"

He replied, "No, it isn't.  I just look at it as something God has put in our lives for a reason, and we just need to make the best of it.  That's why I am going to nursing school to be a nurse and help."  Matt wants to be a nurse manager in pediatric hematology.  He wants to help other families the way our nurse helped us.
 
"Why did God have to mess up my X chromosome?!"  I sobbed.

Matt said, "I don't know, but honey, look at what you are able to do because of this (BWB) and all the people you've been able to meet."

I said, "But, honey, I would give it up in a heartbeat in exchange for my children's health!" 

After more crying, talking, and hugging, I started seeing something I didn't see so well before.  God gave this to us as a gift.  He put us right in the middle of a special group of amazing people.  It is our blessing to know them and love them. 

No, hemophilia does not define Eli or Silas or our family for that matter, but it is a part of us.  It's a very special part because it is not just a bleeding disorder, it is a new family into which we were welcomed with open arms.  God bless you, dear hemophilia family.  You are a gift from God to us, and I pray that we can be as much a blessing in your lives as you are in ours. 

Our Fifth Birth - Silas

17 weeks

31 weeks

After a very busy pregnancy with my husband's career change, a major move, many blog and facebook posts, and much prayer, the time finally came for Silas to come out and join us. . .

On Wednesday, September 21st, I started to feel like "I really want to have this baby soon!!!"  My sporadic contractions had been picking up in frequency and intensity that week.  The day before (20th), I had really begun nesting, and on the 21st I was insanely energetic.  There was crazy hyper nesting going on, and the house was looking great!!  I hit 39 weeks on the 22nd.  That weekend, I started feeling like "This baby is never going to come!  I will be pregnant forever!!"  That is significant because I always feel that way a couple of days before the baby is born. 

Grandma "Kat" helping with bedtime

Isaiah beginning to record
my contractions

Sunday night, the 25th, my contractions were getting stronger, thanks to some alone time with my husband and nursing our toddler.  In the morning, I had some bloody show and more mucus plug, but my contractions were weaker.  I was really discouraged!  I told my husband, "I feel like a car in the winter time that you keep trying to start again and again, but the engine just won't turn over!"  He sweetly and firmly replied, "No, that is not a good comparison.  When a car does that, there is something wrong with the car.  There is nothing wrong with you.  Your body is doing exactly what it's supposed to do.  Don't be discouraged.  You are making progress, and getting ready to have this baby."  Well, that put me right at ease.  I love him.

Birth pool filling up next to Isaiah's bed

Matt went off to work that day ready to come home in an instant if needed.  I kept him updated throughout the day.  When we were on the porch waving to him, our oldest, Isaiah (7yrs) said, "Don't worry, Mom.  If Silas comes, I'm here."  My contractions started getting stronger that afternoon, but were 20 minutes apart.  As the day went on, they got more frequent.  Isaiah started tracking them on a paper.  That evening, I called my mother in law, and asked if she could help me with bedtime.  She came over and was a big help.  My contractions were between 5 and 8 minutes apart.  I was putting sheets on a couple of the kids beds while my mother in law fed them and got them ready for bed including reading books to them.  I would've gone crazy if she hadn't helped me through that evening!

Laboring in my bed with my phone
(I was keeping my fb crowd updated)

Matt came home as quickly as he could after he got off at 10:00, and our midwife arrived soon after that. Or maybe she got there first. . . I can't remember.  She brought her 2 children with her, and right away, her kids and ours were piled on Isaiah's bed playing with Isaiah's game boy!  She got her kids to bed quickly, and Matt got ours back to bed.  Then, I tried to get some sleep. 

Malakai came in to check on me

My contractions were getting more intense.  We decided to at least fill the pool halfway, but I was getting such strong contractions, I ended up telling him to just fill it up all the way because I wanted to get in!  However, when I got in the pool, my contractions slowed down a lot.  We called our doula at 11:30.  She got there when I was lying in Isaiah's bed next to the pool.  I was so tired!
Back in my own bed, I tried to sleep, but lying on my side brought on great contractions.  I just focused on relaxing, knowing that those more difficult ones were the ones that were helping Silas get to my arms faster.  When they were extra hard and I just wanted to survive through it, I would totally surrender my body to the contraction and remove my mind and emotions from the pain.  I would think about my baby, and how the contraction was opening my body for him.  It really helped.

Back in the pool

Whenever I got back into the pool, my contractions slowed down.  This was a very weird labor for me.  My midwife and Matt made sure I was eating and drinking well throughout my labor which helped my energy and endurance level a lot.  My midwife gave me some Valerian herb in tincture form to help me rest.  I did rest, and continued to contract all night.  Our doula had to leave to get back to her baby at home around 8:00am.  She said to call her if things picked up.

Silas, right when I brought
him out of the water

One of the times that I got back in the pool during the early morning hours, Eli walked in the room.  His first words were, "See, told ya I would wake up myself!"  I had told him that someone would wake him up if Silas was coming during the night.  He was very excited that the pool was filled.  Then he said, "So. . . is your belly gonna crack open like an egg?"  I proceeded to give him a basic understanding of where babies come from and the special way that God made mommies to birth them.  He was satisfied enough.  We chatted for a while.  It was so nice to have one of our children in the room.  It made me feel so comfortable, and the atmosphere felt more normal.

Instant Joy after lots of hard work!

While Indian style on the bed, my contractions came every 5 minutes and their severity was very good.  Then, during one contraction around 11:30, I felt Silas move down.  It was pretty cool!  When my legs got tired of that position, I tried the birthing ball.  While I was lunging on the birthing ball, Matt said, "I feel like it's Christmas, and we're trying to squeeze Santa down the chimney." It was really funny, and we both laughed!

After the birth ball, I got down on the floor.  There was a short time (just a few minutes) that I was alone.  I tried to sing "Edelweiss" to Silas, rocking and rubbing my belly.  I couldn't.  I was so overcome with emotion on the lines, "bloom and grow" and "you look happy to meet me", I could not sing!

I was eating and drinking during this whole time. Silas's heart rate was very good.  My midwife suggested that I start walking around.  That was very effective.  My contractions' intensity increased noticeably.  They were more difficult to get through, but I stayed on top of them.  My midwife told me to get in the pool, walk around in the water, then squat down for contractions to ease the pain.  That plan worked very well, and that time ended up being the sweetest and most personal part of my labor.

Our younger 4. Isaiah was busy playing with the midwife's son!
He did peek in from the hallway though.

Matt came in the room with me.  We closed the door for privacy.  Sunlight was pouring in the windows, and our birth play list was playing softly in the background.  I felt so silly walking around in the pool with Matt sitting there watching.  So, I asked him if he'd like to walk with me.  He held my hand, and walked with me around the pool (he was outside).  When I felt a contraction coming, I would squat down, and relax.  Then, I got back up to walk.  Well, our walk became a dance, like a tango or something silly like that.  We laughed so much!  Matt said, "OK, we are not supposed to be having this much fun during a birth!!"  It was such a sweet, funny, and romantic time between the two of us.  

When my contractions were well established, still 5 minutes apart, I stayed down in the water.  Apparently, some were 3 minutes apart because that is what is written in my Labor Record for 1:15pm.

At 1:28, I checked myself, and felt my sweet baby's head!  He was 2 knuckles in, and I felt the molding of his head.

Beautiful pic of Silas and Daddy
(Stacey Rainer Photography)

Gradually, my contractions changed to pushing contractions.  It was NOT easy like Malakai's birth because he had never tucked his chin! So, I did push with my body.

I had asked my midwife to call the children in when I started pushing.  When the children were coming, I pushed his head out.  His bag of waters were still intact until his head came out!  Remember, in Malakai's birth, when I softly stated, "Yes, the head is out." Not so this time!  I exclaimed with exhaustion "HIS HEAD'S OUT!"  After that, there was a brief rest period before the next contraction.  I was caressing his little head.  My midwife came around behind me.  She said his color was good, and said she would check for a cord.  "There is a cord." I told her.  It was loosely around his neck once.  Then, at 1:50pm while Chris Tomlin's "Indescribable" was playing on Matt's iTouch, Silas slowly came out with the next contraction.  I was carefully getting him unwrapped from the cord.  Matt told me to bring him up.  So, I started moving faster.  My midwife said, "Wait, let's get it off his shoulder."  I did with her help, and brought him up.  My midwife stripped Malakai's clothes off and put him right in the pool.  He loved Silas immensely right from the start.  It was so sweet!  Eli told her, "I do not want to get in the pool!"

After our happy relaxed time rejoicing over our newborn and phone calls to our moms and our doula (My labor was so weird that we never knew when to call her until it was too late!), it was time to think about that cord blood.  I carefully got out of the pool, and sat on the birth stool.  Almost immediately, Silas's placenta was born into the bowl below me.  Then, our midwife drew the cord blood.  Silas was still attached to his placenta.  So, she wrapped it in a chuck pad, and put it in a plastic bag.  We chose to do physiological cord clamping for Silas.  We researched the risks and benefits, and decided to let him receive all of his own precious blood and stem cells.  It would take a whole separate post to express all the protection and benefits that newborns receive when they are allowed to get all their own blood and stem cells!  Our midwife was able to get plenty of blood without cutting the cord.  His cord was not clamped or cut for 4 hours.  We did learn that the physiological cord clamping doesn't work the same with a hemophiliac.  First, his cord was cut very long, and didn't need any clamping at all.  However, later that night, when we cut it shorter with no clamps, it did seep a bit, and we had to clamp it.  Next time, we will wait a full 24 hours before cutting the cord short.  With help, I walked to my bed to lie down with Silas.  Matt was soon out the door to run the cord blood to the hospital.

When Matt got back, it was time for our herb bath.  That's always a nice time, and we got lots of beautiful pictures of Silas in the bath.  I think I might make a whole post full of herb bath pics!

A few hours later, we got the call from our hematologist about the blood test results, and learned that Silas does have hemophilia.  I will write more about that later since this post is already so long!

Silas taught me that just because a baby is small, it doesn't mean that the birth is easy.  Silas was only 6# at birth, and his birth was one of my most intense (and I've had a 10#14oz baby!).  I really had to work for him!!  No, size is not the issue, it's all about position.  Silas did not tuck his chin probably because his cord was right there and it was uncomfortable for him.  He came out in an anterior brow position.  However, it was another amazing and beautiful birth, and it was so nice to be back home and share the experience with our children.  Welcome, Silas Martin Reeves!!

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!!! 

To My Husband with Much Love

Thank you, Honey. 

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

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

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

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

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

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

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

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

Love,                    

Me                  

Interview with Liz Purvis

Two weeks ago, Liz Purvis shared her heartbreaking story about the birth of her son, Ben (Tater).  She allowed me to ask her questions about her birth.  My hope is that this mom's message will touch your hearts and make you think.  If you are touched by her story in any way, please leave a comment for her below.  I know it would mean a lot to her to read that their family's suffering is not in vain, and she is helping others by sharing her story.

BWB:  Why is it so important to you to share your story and is it emotionally difficult to do so?
Liz:  It is important because I had no idea that I was pregnant with a son who had hemophilia. I feel like everything went wrong. I want to share my story with other moms who are in the same situation.  Hopefully, they will take away something from this and be prepared. It is very emotional. For 6 days I tried to bring him into the world safely, and it didn't happen.  It's hard to see all the beautiful and safe births, and ours went so wrong.

BWB:  Do you know why your water broke at 34 weeks?

Liz:  To this day, I have no idea. I remember telling some friends and the doctor that my belly had dropped.  I remember feeling the urge to clean the night before. My husband had literally just walked in the door from being out in the field for a week. I was starting a load of clothes, and it just happened.

3 months pregnant

BWB:  How was your nutrition and hydration during your pregnancy?

Liz:  Great. I only gained 20 pounds (though, I only made it 34 weeks! lol) I ate well, drank plenty, and took my vitamins.


BWB:  Do you think the progress of your labor was hindered in any way due to the care you recieved at the hospital?

Liz:  Yes.  I was on my back the entire time.  I wasn't allowed to eat.  I had fluids going in at 200 cc an hour.  I was forced to be in the bed all the time and use the bed pan.  I would get up and use the restroom when the nurses left because it seemed like I had to go every 15 minutes.   I wasn't allowed to walk.  I was allowed to be up for one hour a day when I would play cards with my husband.  I was very uncomfortable with different people in my room all the time.  I was very uncomfortable.  We had no clue what was going on.  We were away from home.  I was always taught (in school) that the baby needs to come out within 24-72 hours after water breaking.

BWB:  "failure to descend" - By any chance, were you on your back?

Liz:  Yes I was. I also had cervical cancer and had lots of biopsies done on my cervix and cancer removed.  So, I never thought I'd be able to delivery naturally with all the scar tissue.  No one listened.  I saw a different male OBGYN every visit, and I was transferred to a different hospital.

BWB:  What drugs were involved in your delivery?

Liz:  They hung pitocin after the contractions starting coming on their own. I was very upset with that. I didn't want that stuff at all. I said, "I waited for 6 days!  Now you can wait!", but they hung it anyway.  It was the worst thing ever.  I had an epidural that the doctor turned off while I was trying to push.  He said if I could feel the contractions maybe I could push him out.  I was also getting iv pain meds: Stadol, I think.

BWB:  Do you believe the Pitocin made your contractions too severe for Tater?

Liz:  I know it made it very hard on me.  So, I imagine they were too severe for him.


BWB:  Did the Pitocin make the contractions so severe that it made the epidural essential for you to endure the pain?

Liz:  Yes ma'am. The last thing I wanted was someone messing with my spinal fluid and putting a needle in my spine. 

BWB:  What is your opinion of them using an internal monitor on Tater?

Liz:  I was ok with the first one.  Tater kept moving around.  So, the external monitors couldn't read. 
*Liz went on to say that she was not ok with the second set that was put on Tater.  It made her very uncomfortable as a mom, and she questioned the medical staff about it being too much for him.


BWB:  How was your strength level when you were induced?

Liz:  I was tired, and recieving so much iv fluid that I was up and down every 15 minutes.  I couldn't sleep because of all the monitors on my belly.  I hadn't had a meal.  I was finally upped to a liquid diet after 2 days.


BWB:  Had you been able to keep up your strength by eating and drinking for the 6 days you were in the hospital?

Liz:  No ma'am.

BWB: How long were you contracting before the c-section?
Liz: about 9 hours


BWB:  How do you feel things were handled after the cesarean?

Liz:  Horribly.  My stomach was growing, not going down.  I had horrible back spasms. My legs were swollen my ankles and feet were so swollen that I couldn't even wear a house shoe.  The pain was horrible.  They wouldn't tell me what was going on.  I had to climb from the surgery bed to my own bed.  They wouldn't even let Bubba help me transfer beds.  I wasn't allowed food or water.  I went to the ER after being discharged for 2 days.  They rushed me back.  I had high blood pressure.  I was so swollen.  They did ultrasounds of my thigh and leg because they thought it was a blood clot.  They stuck me over 6 times to try and get blood.  The amount of blood I had left was too low and they wanted to transfuse me.  When I was admitted back, they gave me iron pills and 3 doses of blood pressure meds, and discharged me again.


BWB: What caused his intercranial hemorrhage?
Liz: We really don't know if it was from all the trauma or if it was spontaneous.

BWB:  What have you learned from this experience?
Liz:  To not have another baby. I don't know how all these people were involved and let things go so wrong.

BWB:  What is your advice to pregnant women who are reading your story?

Liz:  Speak up! If you're not comfortable, talk with the staff and get comfortable.  Don't do anything you don't want to do.  Watch for signs of a brain bleed.

BWB:  What would you like others in the hemophilia community to learn from your story?

Liz:  My story is not normal.  Most people don't go through all of this.  Don't be scared.  Work with your hematologist.  Let your family and friends support you.  Make sure everything is ready just in case.

BWB:  As a nurse, how do you think the medical staff should've communicated with you during and after Tater's birth?

Liz:  They could have done much better.  The doctor was always too busy to talk with me.  The nurses just did what they were told.  The NICU staff was amazing.

_________________________________________________________________________________

Liz's story has made a huge impression on my life.  I am grateful to have had the honor of meeting her online and speaking to her over the phone.  I believe Liz's birth was stolen from her.  She had plans of a gentle birth.  She took care of herself during her pregnancy, and she and her husband were looking forward to having a large family.  For whatever reason, her water broke at 34 weeks.  Her birth was horribly mismanaged, and resulted in lifelong injuries for her sweet little boy.  Liz cares for Tater everyday with her whole heart.  She and Bubba want the very best for him.  Please comment below for Liz.  She will receive anything helpful and encouraging you can share. 

The Last Few Days / Weeks Before the Big Day

Everything is ready except for a few more towels that we are getting from Matt's mom.  The pool is blown up and cleaned.  The liner is on and cleaned.  A sheet is laying over the pool to keep it clean.  All the birth supplies are gathered and organized.  Our midwife and doula have both been to our home making sure they know the route well.  We have Silas's clothes washed up and in his drawer, the blankets washed up, and we have diapers ready for him.  The HTC sent the blue capped tubes for collecting the cord blood to be tested, and things are set up with the local hospital.  The carseat should arrive today. . .  Lets's see, anything else?

We are as prepared as we can be.  Now, we just wait.  This last bit of pregnancy always seems to be the longest, and it is very hard to focus on anything except for baby and birth.  However, I can't just neglect everything else.  I have a husband and four other children!  We homeschool, there are dishes and laundry to be done, and messes to clean up. 

The unknown is always aggravating to a certain extent.  I was just talking to another mom about her birth, and it has me puzzled.  Her baby's cord was wrapped around his neck twice close to the placenta.  Everytime she stood up, his heartrate dropped.  Pushing him out was strangling him.  I will talk to my midwife about this, and find out what is the best thing to do in a scenario like this.  One of my weaknesses is trying to figure everything out.  I want to understand what happened, and why, and how to best deal with it if it happens to me or someone else. 


Meanwhile, it's time for breakfast and everyone needs to get dressed.  We need to have a great school day and lots of housework is needing to be done.  I love my job.  It is not easy, but being a mom and devoting all of my time to taking care of my family is the best job I could have.

Silas will be here very soon!!  I'll be 39 weeks in just 4 days! 

Love and Guilt

Eli, Malakai, Isaiah, and Ana

I know that it is not my fault that 2 (maybe 3) of my children are affected by hemophilia.  I know that genes are more than just  a mutation, and that only those particular X chromosomes would've made each one of our children.   If they had recieved any other X, they would be a completely different child.  Looking at it like that, it makes it easy to be thankful for everything that comes with or does not come with my children's genes because I want THEM.  If hemophilia comes with the package, so be it.  However, last night when Ana showed us a mysterious bruise that she discovered on her hip, I felt an unusual weight of guilt. 


It doesn't make much sense.  I know all the facts.  Maybe it's just because I'm extra emotional with Silas's birth coming so soon.  I don't know, but when I looked at that deep purple bruise on my little girl, I felt like I did that to her.  She is a little ballerina.  She loves all things to do with homemaking and babies.  She is the spunkiest little girl I've ever met.  I love her so much. 

I don't need to feel guilty.  If carrying hemophilia is part of what God has for her life just like it is part of what He had for mine, I praise God for it.  That sweet little princess is going to take the world by storm!  She will have opportunities to reach people that she wouldn't have otherwise. 

I am concerned for some things like:  Will she have any bleeding issues when she hits puberty?  Will she have any issues with childbirth?  Will her factor level ever go lower?  I don't know the answers to these things, but God does.  He loves her even more than I do, and I trust Him.

I Have a Dream. . .

Well, it is very late, and I should be dreaming in my sleep.  Instead, here I write on this blog that holds so much of my heart.  We are officially 38 weeks now that it has hit midnight.  Birth is on my mind even more than usual.  Why do I do this?  Why did I even start Bubble Wrapped Birth?  Why bother?  I'll tell you why.  This is something I believe in with all my heart.  I learned about gently birthing my babies before I knew what the word hemophilia meant.  I want to get the attention of those who have a voice that can make a difference or be that voice myself.  There is a better way, a safer way to protect our little ones through the birth process.  I have a dream that someday our recommendations for delivery will include more than they do now.  Things like:  no pitocyn, avoiding epidurals, getting us up off of our backs, keeping the mom comfortable and making freedom of movement an essential priority, considering water birth, and no forceful pushing.  We can work with our bodies.  We do not need to fear birth.  God did create our bodies to do this.  We are strong.  Our babies are affected so much from birth.  Birth does matter!  Someday, my little girl may have the honor of motherhood, and she will need to choose what is the safest way to birth a possible hemophiliac.  I am doing this for me, for you, but mostly for her.  Goodnight, dear readers.  Sweet Dreams. . .

Baby Carrier Issues with a Little Bruiser

If you follow this blog at all, you know that I am just a BIT excited about the new addition to our family expected very soon (38 weeks tomorrow!!).  There are so many things to thing about.  We are baby wearers.  Whenever we are out with baby, either I or my husband wears the baby in a sling/wrap.  We don't even invest in infant carseats.  We just start with the convertable carseat right away.  Carseats are for the CAR anyway, right?  ;o) 

Baby Eli in Maya Wrap

Eli all padded up in stroller

Well, when Eli (who has severe hemo A) was a baby, this wasn't so easy.  He would get bruises behind his knees where the edge of the sling pushed against his legs.  We had a wrap as well.  That worked better, but was so inconvenient to use.  Everytime we took him out, we had to totally rewrap it before we put him back in.  It was made of a heavy t-shirt material.  As a result, little Eli spent most outings in a stroller with sheepskin behind his knees.  If he wanted us, we just held him. 

I asked my other hemo mom friends about this on my facebook page for Bubble Wrapped Birth.  I got the same recommendation from a few different moms: The Sleepy Wrap!!   It is the same as the Moby Wrap we already have, but the material is lighter, softer, and a lot stronger.  Apparently, it doesn't stretch out, making rewrapping unecessary when you get baby out then back in.  I ordered one, and can't wait to try it out with Silas!  I don't know if he has hemophilia or not, of course, but either way I will post a review here in the next couple months. 

I can't wait! 

I can't wait!! 

I can't wait!!!