Twins in NICU/Preeclampsia Story

Journey to Gratitude: Day 37

What a roller coaster week this has been!

As you know, we found a remarkable deal on somewhat of a “dream house” last weekend, and on a whim, decided to go for it. Our offer was considerably outbid by a cash offer, and though disappointed, we made peace with the fact that “it just wasn’t meant to be”.

I had moved on so much that I was exploring other options to supplement my career in the meantime. In fact, I just sat in on a webinar today and made a deposit on a training certification program for Color Code – a personality assessment of sorts that teaches ways to interact with others based on their “color” (and the motives behind that color). By getting certified as a trainer, I could go out and teach workshops about the Color Code – a perfect compliment to the coaching career that I’m working towards.

Literally within 30 minutes of wrapping up this seminar and paying my deposit (which – thank God – is refundable), Blaine called with unbelievable news. In fact, it was so unbelievable that it left me speechless and in shock: we got the house! I didn’t believe him at first, as Blaine is notorious for pulling pranks. But alas, he was telling the truth. The cash offer apparently backed out or fell through, and we were the next best viable offer on the list. So if the inspection and all goes well, we will be moving in one month to the lake!

I’m sure that I will have many more gratitude posts around this particular subject, but for today, I am just thankful that the house is even a possibility. With all of the hardship that we have been through the past few years (and usually at this time of year, in fact), it feels like a breath of fresh air to finally receive some good news!

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Journey to Gratitude: Day 21

A few days ago, I heard a sad story about a woman who gave birth to premature quadruplets and subsequently passed. The story has been weighing on my mind, because my story could have ended like that. We sometimes forget what a miracle it is to conceive and carry a healthy baby to term, and how miraculous it is for the mother to survive. I feel for the friends and family of those quadruplets, especially the father.

Today, I am thankful that I am alive and healthy to enjoy my Bella. Though we miss Bristol, we are so blessed to have at least one healthy girl and that our daughter has two parents.

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Journey to Gratitude: Day 16

Because of her prematurity, Bella has been part of the Early Intervention program since about a month after we brought her home (i.e. about 3 months old). When she started the program, she was slightly behind in all skills, so our goals were simple things: holding and playing with toys, rolling over, holding her head up and steady, etc. We saw our Early Intervention worker weekly, and Bella made great strides. By a year old, Bella had caught up to her age group on mostly all skills, so we scaled back to bi-weekly visits.

We had a visit yesterday, and in addition to our Early Intervention worker, our state case worker was also present. Both were amazed and astounded with how well Bella is doing. Not only has she caught up to her age group on all skills, but she has even surpassed her age group with several of her cognitive and language skills!

Today, I am so very thankful for the strides Bella has made. Apart from her size, you would never know she was a preemie. Thank you, Lord, for such a blessing!

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Journey to Gratitude: Day 10

Two years ago at 8:00am, I was wheeled into surgery for an unexpectedly early C-section. Pre-eclampsia had ravaged my body, and at 28 weeks, the doctors couldn’t hold off any longer. I was terrified. Not only was my life in danger, but I knew that having my girls at 28 weeks also put their lives in danger.

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Fortunately, I pulled through, and as far as we know, I have no residual effects from the pre-eclampsia. If you have followed my story, however, you know that my baby girl, Bristol, only lived for 9 weeks.

The bright side of this story is that my firecracker, Bella, not only made it, but is a miracle in every sense of the word. Born at 2 lbs and 4 oz, she is still a tiny thing – reaching 20 lbs only recently, just in time for her second birthday. But she has yet to have any major health complications, and is so very observant and smart! Apart from her small size, you would never know that she was born 12 weeks early and spent the first two months of her life in a box in the hospital.

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Today, I am thankful for my little miracle, Bella. I am also thankful that the Lord let me live to see her grow into such a beautiful, smart little girl. And while I am sad that she doesn’t have her twin sister along for the ride, I am so very thankful that we at least had 9 weeks with her, and that we have lots of pictures and video to share her story with Bella as she gets old enough to understand it.

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Journey to Gratitude: Day 9

One year ago, I said “goodbye” to my mother for the last time. Sometime around 9pm, she finally let go and slipped away into heaven, where she was greeted by my baby girl, Bristol, as well as my Aunt Lynne, my dad, and others who had passed before her. This day is especially bittersweet, because it is also the eve of Bella’s second birthday. So exactly a year before my mom passed, I was preparing to give birth to my baby girls at just 28 weeks into pregnancy. This date is a tough one, as it is now marked with two major events.

So what on earth could I be grateful for on a day like today. Well, as I sat at home today with my head swarming with memories, a beautiful bouquet of flowers showed up at my door. I opened the card to find a sweet message from my work family. So today, I am thankful for such a wonderful job and an awesome, caring team. What a sweet gesture on such an otherwise sad day! It reminded me that I am not alone, and that I have folks who not only care about me, but remembered that this was a special day. I am blessed to be a part of Chick-fil-A Bristol!

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A Mother’s Memory

To meet me now, you would never know that I have just been through one of the toughest years of my life.  I have a beautiful, healthy 8-month-old daughter, an amazing husband and life partner, a nice house, a great dog, and – as of last week – a great job.  No, to meet me now, you would think I have the perfect life.  And I do…..now.  But just six months ago today, we had to say goodbye to our baby girl.

I may never know why we had to go through all that we did.  Why are there so many babies born to families that don’t want them?  Why are healthy babies born to ladies who smoke or drink – or worse?  Why did my body reject my precious babies when I did everything right?  I don’t know.  I may never know.  But I am thankful that we got to have 9 weeks with our precious baby – enough time to make memories to last a lifetime.  In fact, when choosing the words for her headstone, we wanted to capture that sentiment.  After reading countless phrases, we finally found the perfect one:

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Bristol touched so many people in her short time.  Her story is one that will be remembered and told for years to come.  She was so tough and so brave.  I have no doubt that she would have been sassy and spunky just like her sister.  The Lord surely got “the best” when He called her back home.  This poem gave us great comfort when we were grieving:

God saw you getting tired and a cure was not to be,
So He put His arms around you and whispered, “Come to me”.
With tearful eyes we watched you and saw you pass away,
And although we love you dearly we could not make you stay.
A golden heart stopped beating, hardworking hands at rest,
God broke our hearts to prove to us He only takes the best.
—-Unknown

The other poem that spoke to us during that time:

When God calls little children to dwell with Him above,
We mortals sometimes question the wisdom of His love.
For no heartache compares with the death of one small child,
Who does so much to make our world seem wonderful and mild.
Perhaps God tires of calling the aged to His fold,
So He picks a rosebud before it can grow old.
God knows how much we need them and so He takes but a few,
To make the land of Heaven more beautiful to view.
Believing this is difficult, still somehow we must try.
The saddest word mankind knows will always be “Goodbye”.
So when a child departs, we who are left behind,
Must realize God loves children.
Angels are hard to find.
—-Unknown

Finally, for those unable to make Bristol’s memorial service, I wanted to share the letter I wrote for her:

letter to Bristol

We are so very lucky to have such an amazing angel watching over us!  We miss you, baby girl!

PREVIEW: Bristol Baby

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What a difference a year makes!

On August 3rd last year, Blaine and I discovered that I was pregnant.  Little did we know what all was in store for us over the coming months – twins, pre-eclampsia, NICU – what a year!

I have always enjoyed writing, and it has always been a dream of mine to write a book.  At one point when I was young – maybe around 4th grade or so – I actually aspired to be an author when I grew up.  Almost thirty years later, I am finally trying to make that happen.  I am currently working on writing our story.  I thought it fitting to share with you the very rough draft of the start of Chapter 1, given that it is about how we found out I was pregnant and today is the one year anniversary.

Because we were so secretive for the first 15 weeks (well, and I didn’t even find out until I was about 5 or 6 weeks along), many of you may not even know the whole story about how we found out.  I hope you enjoy our story…

Click here to read the exerpt: Chapter 1 – Finding Out

A Mother’s Strength

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I am amazed at how many people have said to me that I have shown great strength throughout this process, as if I have done something remarkable.  I don’t feel particularly strong or remarkable.  I feel angry, sad, confused – but not strong or extraordinary in any way.  I have only done what I feel any mother should do: love my children to the best of my ability.

Looking back to even a few years ago, I was never sure if I really wanted children – partly our of selfishness for enjoying my no-strings-attached single life, and partly because I was in my thirties and unsure if I was ever going to be able to find a partner with which to settle down.  I suppose there was also a part of me that was secretly terrified of what toll a pregnancy would take on my body given that I have a heart condition.  How silly that all seems to me now that I have produced two beautiful girls!  I cannot imagine life without them now, as they and their Daddy have completed my life in a way that I never could have dreamed.

Even given our loss of Bristol, I am thankful that we had the chance to love her, if even for a short time.  She was the embodiment of strength, as she endured countless tests, x-rays, blood transfusions, needles, drugs – more than even most adults endure in an entire lifetime – and yet, she never gave up her fight.  I think we counted that she ultimately had 11 blood transfusions in her 9 short weeks of life, and doctors and nurses were constantly amazed by her high tolerance for medications, requiring as much as 2-3 times the strength of doses usually needed by a baby of her age and size.  SHE was strong.  SHE was remarkable.  BRISTOL was extraordinary.

By comparison, I was/am quite weak and average.

I guess people expect me to be overwhelmed by grief and sadness to a point to where I can’t even get out of bed.  Or maybe they expect me to cry uncontrollably all the time.  But I guess I can’t comprehend being that person when I still have so much to live for.  I have Bella, a beautiful miracle who relies on me for sustenance.  I have Blaine, who provides a love that gives me strength to keep going.  And I have friends and family that show a support that shows me there are angels here on earth to watch over me when times get rough.

No, I am not strong.  All I have done is to do my best to give my daughters the best chance at life, and in many ways I feel that I have even failed.  I failed to carry them anywhere close to full term, putting them in all sorts of danger.  And I failed to help Bristol grow a decent pair of lungs, which ultimately cost her her life.  What I did manage to do is visit them everyday – though only for a few hours – and supply them with my milk.  That is all.  How is that so remarkable?  Women everyday all over the world love their children and supply them with milk – that’s just called being a mother.

No, I am not strong or remarkable or extraordinary.  I’m just your average mother providing love to my children.

When people would talk about me being strong, I was always reminded of this song:

Twila Paris – The Warrior Is A Child – A Heart That Knows You Album Version

A Mother’s Guilt

Bristol hugging pillow (Bristol)

I am a logical person who appreciates facts.

FACT: I did everything within my power to have a healthy and safe pregnancy.
FACT: Preeclampsia was not my fault and not even doctors know what causes it.
FACT: Some things are just beyond my control.

And yet, I cannot even express in words the amount of guilt that I carry for getting preeclampsia and being forced to deliver my twin girls at 28 weeks.  To compound the situation, my youngest girl, Bristol, suffers day in and day out as doctors struggle to find a way to heal her sick, undeveloped lungs.  She had a collapsed lung from a pneumothorax about 48 hours after birth, has been on both a jet ventilator and a conventional ventilator ever since.  Despite treatments of surfactant, steroids, and numerous vaso- and broncho-dilators, her overall lung condition has worsened, and doctors now say she has pulmonary interstitial emphysema and chronic lung disease.  As if that isn’t enough, she has contracted a couple of infections – one in her lungs and one in her blood – so they are giving her two antibiotics.  Because she is a fighter and often very restless, doctors also pump her with several sedatives, including morphine.  She is listed as “severely critical” and “unstable”, and her life journey so far has been a roller coaster with a few highs and a lot of very low lows.  When I look at her, my mind races with a million “what ifs”:

“What if I had never gotten preeclampsia?”
“What if I had made it just a few more weeks?”
“What if I had rested more during my second trimester?”
“What if I had eaten better or taken more vitamins?”
And the list goes on….

I even feel guilt for celebrating the successes of my oldest girl, Bella, who has (thankfully) not had any major issues thus far.  She has been breathing on her own and has only a nasal cannula (the same little tube you or I would get if we were in the hospital), which merely provides supplemental oxygen to remind her little preemie brain to breathe.  She has been on feedings of my breast milk through a tube since Day One, was off of TPN (IV supplementation) within about two weeks, and is now practicing latching on for actual breastfeeding.  This week, she began regulating her body temperature much better, so they removed her temperature probe and have allowed her to begin wearing clothes and swaddling in sleepsacks.  These are all things to celebrate…..but I feel guilty celebrating and feeling excitement when I have a sick child who is hanging onto life by a thread.

And at the end of the day, I feel guilty when I become exhausted and want to go home to sleep in my bed.  My girls – and especially Bristol – are fighting for their lives 24/7, so who am I to say I am tired?  But there are days when I just want to stay home and catch up on my sleep.  In addition to the emotional roller coaster we endure as parents of preemie babies in NICU, I am pumping my milk every 3 hours – which means that I haven’t had a full night’s sleep of 7-9 hours straight since before I went into the hospital.  My house is in disarray, I am behind on thank you notes for all of the generosity that has been extended to us, I need to run errands like grocery shopping, I need to take care of some paperwork and such for the girls and I – just a million things that are piling up.  I feel like I just need one day to myself to sleep and take care of all of that – but I can’t bear to miss a day with my girls, and I would feel guilty if I even tried.

As I struggle with my guilt day in and day out, I can’t help but wonder, “Is this just all part of being a good mom?”

Bellas first pjs (Bella)

Not Ready for January Babies

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Baby showers. Professional pregnancy belly photos. Decorating the nursery. The exciting drive to the hospital for delivery. All very normal things that normal pregnant women get to experience.

I missed out on all of them.

When we found out we were having twins, we were almost instantly also told that twins almost always come early and that 37 weeks is considered “term” for twins. That being said, my doctor’s goal was to make it to 38 weeks (he was a very optimistic guy). As the pregnancy went on and I read more about twins and their moms, our goal was to make it to 36 weeks, but we were prepared for as early as maybe 34 weeks. Given that my due date was April 3 if I were to carry them the full 40 weeks, that meant that our babies could be born anywhere from about mid-February to about mid-March. In my gut, I always knew they’d be earlier than expected or planned, but never in my wildest dreams was I prepared for January babies.

Being the super planner that I am, I began planning WAY in advance – just in case. I created a registry in early November – as soon as we were certain they were girls. At my appointment the week after Thanksgiving, I made a trip on over to the hospital to schedule our tour of the birthing center, where we would get a chance to go ahead and fill out paperwork and such, as well as talk to the staff about our birthing plan, etc. I scheduled it for January 2. A couple of weeks later, I went ahead and scheduled us for our infant care class and our childbirth class – both for the first week in January. Finally, we decided we would stay here in Tennessee for Christmas this year instead of traveling to Kansas, and we would use that time to assemble the cribs and get the nursery all settled. Finally, my mom wanted to come visit for New Year’s, and we thought we could use that time to shop for a gown and robe and other items needed for my hospital bag. Essentially, I would have everything done and completed by about the second week in January, so if the doctor decided at that time to put me on bed rest, that would be fine, because all I would be doing was sitting and waiting for the girls to come anyway.

Then came my doctor appointment on December 20. Due to an abnormally high blood pressure (140-something over 90-something), protein in my urine, and sudden and excessive weight gain (13 lbs since my appointment 3 weeks prior), the doctor sent me immediately over to the hospital from his office. He wanted me to do a 24-hour observation, in which they would try to get my blood pressure under control and do a 24-hour urine to count the amount of protein. Once my 24 hours was up, I was diagnosed with mild preeclampsia and was sent home on strict orders of bed rest for the remainder of the pregnancy……which meant all of my plans mentioned above were tossed out the window,

So much for planning and trying to be prepared.

The next 2 1/2 weeks, my preeclampsia escalated very quickly, and on January 7, I was admitted to the hospital for good. Two and a half days later, I gave birth to my girls.

To top it off, I didn’t even get to hold or touch or kiss my girls once they were born. In fact, I didn’t even lay eyes on them until about 36 hours later. They were whisked up to the NICU as soon as they were born, and I was sent back to my room to lay for another 24+ hours with the stupid magnesium drip that left me drugged out of my mind. Once taken off the drip, I had to wait for it to leave my system, and then had to prove to the nurse that I was capable of walking – or at least standing to get into a wheelchair. And THEN I had to prove that I could walk to and from the bathroom so that they would take out my catheter. FINALLY, after all of that, they let me go see my girls.

In many ways, I feel that I was robbed of so many of the joys of pregnancy. And given my experience with preeclampsia, I’m not sure that I will try pregnancy again. I am thankful that I did at least document the six months I did get to enjoy of pregnancy, so I at least have belly pictures (however amateur) to show the girls one day, and I have a very detailed timeline of every pregnancy moment, ultrasound, symptom, etc. At least I have that.