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. 

Tater (Ben): Liz and Bubba (James) Purvis's Story

I met Liz Purvis on facebook.  I was searching for hemophilia birth stories specifically ones where the baby suffered a bleed.  I just wept when Liz shared her story with me.  Since then, she has shared pictures of little Tater on BWB's facebook page.  This post is dedicated to Tater and his loving parents, Liz and Bubba.  The following is her written story and the captions to the pics are in her words.

~Our Story~

I would like to introduce myself. I’m Elizabeth and I’m married to James. We have a beautiful son named Benjamin. He has severe hemophilia A with inhibitors.. I’m a nurse (but I stay at home with Ben) and my husband is in the army. Here is our story.

After 6 days of my water being broke. 3 internal monitors placed.
Finally a csection due to failure to decend. 5 weeks early

subgaleal bleed from 3 internal
monitors being placed

We decided to get pregnant. Nothing ran in our families so we were expecting no complications. My pregnancy was wonderful. Then at 34 weeks my water broke. I was admitted to the hospital and 6 long days later Benjamin came in to the world at 35 weeks via c-section because he failed to descend. I kept asking what his apgar score was (a score that basically says how well the baby is after birth) they would not tell me. They put a hat on his head. Let me kiss him and my husband held him for a brief second. And they whisked him away. When I was in the recovery room they told me that he was in the nicu on oxygen. I finally made it to the floor and my husband said they would not let him see the baby. We called up there and they said to come pick up some paper work and supplies for breast milk. My husband came back and told me there was something wrong with Bens head. The next morning the doctor came to talk to us and told us that Ben had a subgaeal hematoma. That is a bleed in between the scalp and skull. It looked horrible. They had no idea what caused it. They needed our consent to give blood transfusions. They ran a clotting test called a Prothromin Time (PT) but every sample clotted before the lab could run the test. After a week they said we could take him home. We roomed in with him. They did a heal stick on him and he bleed thru a band aid paper towel house shoe and six blankets. He no longer could maintain his temperature. They took him back to the nicu and ran tests. The next morning they did a ct scan and found a subdural bleed. This is a bleed between the brain and skull. They wanted consents to start cryoparticiapate which is packed blood cells and give him a drug called Novo7. They were consulting with a neurosurgeon. They told us the baby would need brain surgery to evacuate the blood. We went to see him. We were waiting for the next step and all of a sudden they said it was time for the surgery. We had a priest come and baptize him. 

Right before the surgery.
Subdural bleed causing stroke and seizures.

3 internal monitors placed. They "screw"
into the scalp. And they "came out"

And he went down. The surgery took about 2 hours. When the surgeon removed the skull the hematoma expelled itself because of all the pressure. He also had some clots in his brain that they removed those clots caused him to have a stroke. They inserted a Picc line in his head. So they wouldn’t have to keep doing ivs in his hands. They kept him on a ventilator and in a medically induced coma. After a few days we were transferred to a large city where we immediately got a diagnosis of hemophilia a. His level was 16%. They started advate and weaned him off the ventilator. Ben did so well. He started eating on his own so they could remove the feeding tube. He held his own temperature. It was wonderful. Then his IV accesses stopped working, even the Picc line. We were then bombarded with people who wanted to put in a central line. I asked for a central line for days. We consented for one and they decided to put in a picc line at the other hospital. This whole time a hematologist only spoke to us to give us the diagnosis. NO other time. We kept asking. SO after a hematologist spoke to us and told us he had to have the broviac (central line) to go home. He did very well with that surgery.

Healing at surgical site

We were soon able to take him home. The only thing we knew is we had to give advate three times a week and they told us he would never get to be a normal boy. We had lots of questions that they would not answer. Like can he play baseball or ride a bike. Do we get extra advate in case he falls? You know stuff like that. They said our questions would be answered later on his life. I got tested and I am a carrier at 12%. And we retested Ben and his level was <1% so he is a severe. Lots have happened since all of this. He now has a port. He also has an inhibitor. That complicates the situation even more. I have met some awesome people thru all of this. He is doing really well. We attend Physical therapy and occupation therapy and many many more appointments.

Tater's scar 17 months later

"Pushing" for a Gentle Birth

My husband and I have had 4 beautiful all natural water births, and are looking forward to our 5th in the next few weeks.  If you've read my birth plan, then you may have noticed #6: "I will not start pushing until my body starts pushing on its own. If I get an undesirable urge to push before then, my midwife will check to make sure I am fully dilated. Ideally, I will try not to ever push to make sure the baby comes out as easy as possible."  I want to use this BWB post to talk about my experiences with pushing.

Isaiah still in water seconds after his birth

With Isaiah, our first born, I pushed with every contraction as soon as I found out I was 10 cms dilated.  I felt like I was pushing against a brick wall.  Now, I know that I should've waited until my body started pushing on its own.  Of course, my midwife wasn't intending on my forced pushing.  She told me to push if it felt good.  I was pushing because I thought that my baby would get into my arms faster if I did.  Well, that pushing lasted for 4 hours.  Isaiah was fine.  Our midwife kept a close watch on his heartrate, and when he started crowning, she kept a close eye on his skin coloring.  The only issue he had was that the plates in his skull were very overlapped, and even caused the roof of his mouth to not be smooth which effected his ability to latch on well.  Isaiah does not have hemophilia, and I am so glad because I think all that time in the birth canal may have caused problems if he had hemophilia.  As it was, the overlapping issue was resolved in a few days, and he was just fine.

Right after Ana's birth

Ana, our second, was another story!  I didn't mention in the previous paragraph that Isaiah was 9#8oz at birth!  Well, Ana was only 7#4oz.  That is a significant difference!  My midwife would not tell me when to push.  She said, I would let them know when it was time for me to push.  So, I waited.  It didn't take long at all until all of a sudden I was pushing with a contraction.  It just happened!  I wasn't trying to push or anything.  It was a natural response to my body's birthing process.  Within 6 minutes, she was born.  It was amazing!  Ana is a carrier of severe hemophilia A like I am, and did not have any issues at birth.

Elijah hours after delivery

Our third birth, Elijah was very different from Ana's birth.  If you read his story, you'll get a better idea.  One thing I did right was that I "tested" pushing with a few contractions, not a lot, just a very little start of a push.  It did not feel right.  So, I did not push.  I only started pushing when it felt right.  Which brings up the issue of epidurals.  Yes, they occasionally have their place, but they should be avoided for so many reasons.  Knowing when it feels right to push being one of those main reasons.  I learned in my first birth, that you can push too soon even after you're dilated to 10cms!  Ok, off the soapbox and back to Eli's birth.  When it did feel right to push, I quickly realized that this baby was BIG.  He wasn't coming out easy like Ana did, and I didn't want him to be in the birth canal as long as Isaiah was.  So, I P-U-S-H-E-D harder than I had ever pushed before!  When his head came out, my body rested as it always does.  It felt like forever!!  When I began pushing again and his shoulders and torso came out, I thought he was totally out, and went to scoop him into my arms.  "One more push! one more push!" my midwife and husband said.  I gave another little push, and that big 10#14oz bubba was in my arms!!  He was pink, and had no bruising at all.  If you read this blog, you know that Eli is our hemohiliac.  We didn't know until he was 4 months old that he had hemophilia.  I believe with all my heart that God's grace, the gentleness of his birth and my management of the pushing stage of his birth are credited with his safety.  It blows me away that our severe hemophiliac was the one that was almost 11#s at birth! 

Malakai just minutes after delivery

Malakai's birth was a breeze.  Like Ana, I didn't have to actually push at all.  My body just pushed him right out.  He was only 7#12oz.  He did have a meconium issue after his birth, and he was fine once they got it all suctioned out of him.  If you would like to see one of our births for yourself, we have a very non-graphic video of Malakai's birth on youtube.  His birth was the first one that we planned in the knowledge that our baby had a 50% chance of having hemophilia. 

All of our births have been water births.  I am a true believer in water birth.  I think it is a major cause of the gentleness of our births.  I have blogged about this before in:  Why I Love Water Birth:part 1 and Why I Love Water Birth: part 2.

The conclusions I draw from all my various pushing experiences are these:

1.  Don't push just because you are 10 cms.

2.  Focus on relaxing and staying "on top" of the intensity of your contractions.  If you are working with your body, your body will naturally start pushing on it's own, and you may not have to push at all.

3.  Only push when it feels right.  Sometimes, with very large babies, it may be necessary to push with your body.  I personally do not believe it is good for a hemophiliac to stay in the birth canal for a long time based on seeing what happened to Isaiah's head.  So, I do believe I did the right thing in pushing very hard with my body to get Eli out as soon as possible.

4.  Being as relaxed as possible, and in a position that allows gravity to help the process helps the pushing stage be much easier on mom and baby.

Thank you for your interest in Bubble Wrapped Birth.  As always, please don't just take my word for anything.  Do your own research.  Talk to your doctor or midwife.  This is what I believe and what I know works for me.  However, I do hope I have sparked some thoughts about the 2nd stage of labor that you may not have had before.  Thanks for reading!

Why I Love Water Birth: part 1

I first heard of water birth when I was a teenager.  My first thought was "That's crazy!  Won't the baby drown?!".  I really didn't think of it much more until I was married and we were expecting our firstborn.  The first midwife we interviewed told us that she almost exclusively did water births.  She told us that water birth was a lot gentler on both the baby and the mom.  "For the baby, the difference is like waking up at your own leisure on a Saturday morning vs. being woken up with an alarm clock on Monday morning."  The baby is born from warm fluid into warm fluid, and is gently lifted up to the air, and the baby is not stimulated to breathe until he/she comes in contact with the air.  The warm water helps mom relax, and her body opens up more.  The warm water is also great pain relief, and allows the mom to move to different positions effortlessly.  We were impressed with all the benefits she shared with us, and decided to go with a water birth.

Our first birth was at home.  My husband (Matt) and I were in the birth pool together.  Isaiah was crowning for an hour.  Our midwife kept close watch on his heart rate and skin color which was fine, and Matt played with his hair.  After 4 hours of pushing, Isaiah was born into his daddy's hands.  Matt passed him to me, and I lifted him up out of the water.  He was big!  9lbs 8oz, broad shoulders and big chest.  No wonder he took so long to come out!

Baby #2 was also born at home.  Things went a lot faster this time.  I knew I was in labor around 11:00pm and she was born at 1:30am.  My mom called our midwife, Matt got the pool ready, and I was laboring on the toilet, tailorsitting on the floor, hanging on people. . .  I couldn't wait for the pool to be ready!!  Finally, it was warm enough and full enough for me to get in.  Ahhhhhhhhh. . . .   instant relief!  My sister acted as my doula, and my sis-in-law was there to take care of Isaiah (then 2 years old).  Matt and I were in the pool.  My midwife would not tell me when to push.  She said I would tell them when it was time to push.  Suddenly, one contraction caused me to bear down!  I told my sis-in-law to wake up Isaiah.  He wanted us to wake him up for the birth.  She did.  She told him that the baby was coming.  He got up, unzipped his pajamas, and started taking off his diaper, and climbing in the pool!  My midwife said it was fine.  So, we let him in.  Within 6 minutes of the first pushing contraction, Ana was born into my own hands.  Matt was holding Isaiah, my sister was right outside the pool next to me.  With one hand on my sister's shoulder, and one hand on Ana's head, I told everyone when she was crowning, when her head was out, and brought her up out of the water when she was born.  She was pink and looked so little at 7lbs 4oz (2lbs less than her brother was!)