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!!!

The First Year with a Little Bruiser

Well, we are 3 days away from hitting 38 weeks with Silas.  I have had a couple episodes of stronger braxton hicks contractions, but it looks like he will not be coming earlier than our other little ones did.  My history has been: 40 weeks 5 days, 40 weeks 3 days, 41 weeks, and 39 weeks 5 days.  As we get closer and closer to the big day, I am so excited to get him in my arms!!!  Sometimes, I also think about going through another first year with a baby who has a severe bleeding disorder.  

It was really scary and stressful with Eli.  We didn't understand much about hemophilia, and rushed him off to the HTC/ER any time he hurt himself to any degree.  We were so scared of missing a bleed.  I am glad we were so proactive, though.  It would've been awful if we had missed a bleed.  If Silas has hemophilia, I don't think it will be as bad as it was with Eli, but it will still be hard.  Things got so much easier when Eli got his port placed, and we were trained to care for him at home.  Silas (if affected) will have to get many pokes for bloodwork and emergency factor treatments, and that is so traumatic for a little guy.  We won't be able to treat him at home at first since we are not trained to access veins, especially tiny baby veins.  I am not looking forward to this part of the deal at all.  Oh, we'll make it.  Everything will work out.  I'm just being real about this because I know many of you can relate.

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!

"Normal" by Amber Webb

I read this the other day, and was deeply moved.  This beautiful note was written by my cousin's wife.  They, like us, have a new normal.  I think you will be blessed by these words spoken straight from her heart. . .

~Normal~

It's funny how that word takes on new meanings as we walk through life. Normal.
I remember being pregnant and talking to Micah about what it was going to be like to have a little boy: all the things we would do; where we would send him to school; what his room would be like; who he would look like. I remember holding him in the hospital room when he was born and thinking, "This has to be the most beautiful baby ever born." The night the nurse told us Ben had Down Syndrome is also one that I'll never forget. The most heartbreaking moment for me was hearing Micah say, "That means I can't teach him to fly." His airplane themed nursery suddenly didn't seem to fit. It was almost as if we were mourning the loss of the child we planned for. Everything changed in that moment. This "normal" we had planned suddenly vanished.
The days and weeks after that have had their ups and downs. Some days I wonder where the balance is between acknowledging that Ben is different and ignoring it completely.
Here's what I've learned so far...
My son is different than yours. SO WHAT. My version of normal has changed. SO WHAT. I'm thankful for that pesky extra chromosome and I'm thankful the Designer decided to bless us with such wonderful little boy.
Micah is back overseas working hard and my time is consumed by a precious little boy with Designer genes.

God is still good and that's MY normal. What's yours?  

"Oxygen Mask"

This week, my dad has been in the hospital because his oxygen level has been too low, and he needed help.  He is home now, but remains on oxygen.  That was and still is scary for our family.  It is also such a good reminder to me. . .

A good friend once shared a story with me.  She was on an airplane, listening to the flight attendant's speech about safety.  She was once again bothered by the part where they insist you put your own oxygen mask on before you help your children with theirs.  So, she asked why.  Of course she would help her children first before herself, right?!!!  The flight attendant's reply was something she never forgets:  "Because if you are unconscious, there will be no one to take care of your children."  My friend carrys that with her as a mother.  How true this applies to our parenting!!!  We need to find our oxygen mask.  Take good care of ourselves so that we can take better care of those who depend on us. 

Now for my confession. . .

I have been so wrapped up in my blog, facebook page, and the constant demands of my children.  I have not been taking care of myself.  Pretty hypocritical, I know, but i think a lot of you can relate.  Last night, I started having a lot of braxton hicks contractions that wouldn't stop, and I was getting chills.  My husband wasn't home yet, and I was trying to have a special "snuggle and story time" with my children before bed.  I decided it would be good to check my urine (aimstick), and discovered what was causing my discomfort.  I was very dehydrated.  I called my midwife after my husband got home (husband speaking: I was NOT happy when I got home!), and she gave us instructions on how to get things under control.  It worked!  This morning, I feel so much better, and my specific gravity (hydration) has gone up quite a bit.

There was no excuse for this.  I know better!!!  My husband and midwife are keeping me accountable to take better care of myself.  I am 36 weeks and 2 days.  Silas should have a few more weeks to grow healthy and strong!  He is deep into my pelvis already.  We shall see.  But, I can tell you that I will be more careful to put on my "oxygen mask" from now on!

Elijah



Eli and Silas

Elijah is 3 1/2 years old.  He will be 4 this December.  He is our third born child, and our only hemophiliac.  When we were expecting our fourth, Malakai, a big part of me was actually hoping he would have hemophilia too so that Eli would have a hemo buddy.  The strangest thing happened the moment we recieved the news that Malakai was unaffected.  I was sad.  I was so sad for Eli.  He was still my baby, not even being 2 years old yet.  Now, 2 years later, I am so thankful that Malakai does not have hemophilia.  As you probably know, we are due to have our fifth child, another boy, in 4 weeks.  Again, we will find out after his birth if he has hemophilia or not.  Elijah has been expressing that he wants Silas to have hemophilia like he does.  This breaks my heart!  Of course I would never choose a bleeding disorder for any of my children, but if Silas does have hemophilia, then that is part of who God made him to be.  I know it would be very special to Eli if Silas had hemophilia.  God has a special plan for each one of our children, and for Eli, having hemophilia is part of that plan.  Please pray for him.  I don't know what the next few weeks will reveal, but I want Elijah to be just as happy about Silas even if he does not have hemophilia.  I don't want his little heart to be broken if Silas also turns out to be unaffected.  Please please pray for him.  He is such a sweet, passionate, strong little guy.  His older sister, Ana is a carrier like I am, but it's just not the same.  Elijah is very much on my heart as Silas's birth gets nearer.  I love him so much.