Our faith journey chronicling Baby Wittenberg and Preterm Premature Rupture of Membranes at 17 weeks 2 days.

Wednesday, March 31, 2010

Day 60

Today it is my great pleasure to share with you the good news we received yesterday afternoon. New tests have confirmed that God has performed a miracle - nine weeks after my water broke, it appears my amniotic bag has completely sealed over. Baby girl’s development remains on track.

To put this news in context on January 31 when my water broke at 17 weeks, we were told that Baby Girl could not survive and were advised to initiate labor right then and terminate the pregnancy.

Over the weeks that followed, the experts twice again advised us to “abort the fetus.” We were originally told there was ZERO chance our daughter would develop properly or be born healthy.

With the help of our OB, we found a local doctor who had done research with pPROM patients. He told us that on very rare occasions spontaneous ruptures could seal over and so we began nearly 9 weeks of bed rest. He sees 3-4 pPROM patients weekly and in his 12 years practicing had only seen a spontaneous rupture seal over 3 times.

Yesterday, he told us he believes he has seen it 4 times now. Tests confirm there is no remaining evidence of rupture. Fluid levels are normal and the baby is developing “perfectly normal.” However, there is still no way to know whether she will have certain long term challenges, such as cerebral palsey until she is born.

Now, we embark on the next phase of this journey – trusting in what God has done. And so over the next three weeks, I will slowly get out of bed and return to moderate activity. Another three weeks and we will be past the critical 28 week mark. If all goes well between now and then, the doctors might be persuaded to release me for normal activity by the end of April.

The doctor yesterday explained that it is difficult for doctors to throw out the book and “trust” when there is a “weird” development like this. But, he cannot ignore that at this point I appear to have sealed over. So while the book says Baby Girl should be delivered at 34 weeks, he is in agreement that as long as nothing changes, I can carry her full term (40 weeks) – allowing her to fully develop in the womb and avoid an extended hospital stay when she is born.

To be honest, it is difficult for Brian and I to trust, as well. While bed rest hasn’t been easy, it seems easier than walking into the unknown with all the what ifs. The doctors don’t know what caused my water to break and can’t give us any guarantee it won’t happen again. In some ways, it would be emotionally easier to stay in bed and avoid taking any risks.

But from day one this has been a journey of faith for Brian and I, and today is no different. Why God chose to work in this way in our lives is beyond our comprehension. We believe that God has faithfully answered the prayers of hundreds of friends and strangers and has interceded on our behalf to heal our baby daughter when no doctor or medicine could. And so we will continue to trust in Him, walking obediently by faith day-by-day, casting out fear and resting in His divine plan – no matter what the outcome.

Thank you for your support and prayers!

Carie Anne

Monday, March 22, 2010

Day 51

Quick Update: Baby girl turned 24 weeks on Friday! Yeah! It is so amazing to feel her kick and squirm now everyday.  For the first time in weeks, I feel full of energy… thanks to my first of two steroid shots this week – the second comes tomorrow. We’ll see how great they are when I am trying to sleep tonight - arg.

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Getting the shots was a pretty difficult decision. Although I appear to have sealed over (unexplainable miracle) and my amniotic fluid levels are in the normal range (another miracle), the lack of fluid for an extended period of time “probably” put the baby behind in lung development, so in a “typical” pPROM patient the steroids are given at 24 and between 28-30 weeks. But with any intervention there are risks.

There are four doctors who consult regularly on my case and guess what…they didn’t agree on the treatment, leaving Brian and I to weigh our options and then pray we make the right decision. A new friend remarked this is why they call it “practicing medicine.”

Brian’s mother continues to struggle with a serious infection and has been in the hospital for more than 40 days, unable to rid her body of a bacterial infection that is resistant to most antibiotics. As of this weekend, she is on the last two possible antibiotics – so we are praying that one of these works to fight the infection.

The support Brian and I have received and continue to receive through this time has been nothing short of AMAZING – from meals and books to phone calls and visits from friends. Then, of course, are all the new friends we have encountered. People who have walked a similar road before us and are willing to be a resource and listening ear for us now.

One a day I was feeling particularly low struggling with all the changes an uncertainty in our lives, when I received a call from one of these new friends reminding me that God taught us to pray for Daily Bread…not weekly, yearly or five-year plan bread…an difficult concept for a type A gal! She’d been there…she got it.

When I found myself struggling to plan for our baby girl, a new friend dropped me a note reminding me that God promises in Mark 11:24 "Whatever things you desire, when you pray, BELIEVE that you receive them and you SHALL have them." And so Brian and I have begun again to take new steps of faith and make plans for the nursery, as we continue to pray and believe that despite everything, Baby Girl will join us here at home.

I feel like God is teaching both Brian and I so much through this whole experience. I truly believe the lessons we are learning in humility (I’m pausing here for my friends to stop laughing) and dependence on God are so necessary in our journey to parenthood. Although immensely challenging at times, I feel grateful for this time God has provided for us to mature our faith, reevaluate our priorities and strengthen our relationship before Baby Girl arrives, so I choose to praise Him in the storm.

While I still always know the doctors prognosis, I rarely feel discouraged. Now that I feel her kicking and squirming, I CHOOSE to believe that God's healing hand will remain on her and that he will continue providing for all our needs as a family day-by-day.

We are so grateful to be surrounded by the love of our Father, family, friends, and strangers. Thank you all for your continued prayers.

Wednesday, March 17, 2010

Day 46

Brian weighs in today....

As many of you have experienced, there are times in your life when you just don’t know what to feel. This is definitely one of those times for Carie Anne and me. We are obviously excited about the news that we received last week at the doctor’s office. This was definitely a feeling of excitement and relief.

Last night when Carie was going to bed, she mentioned to me that the baby hasn’t kicked in a few hours. This is probably something that we shouldn’t worry about but with everything that we have gone through we were obviously nervous. In every conversation with Carie after that, I have asked if she has felt anything. I even went to get a glass of orange juice before laying my head on the pillow because she always responds to that. In my last conversation with Carie, she had heard from Baby Wittenberg. She must have been tired and took off a couple of hours from exercise, just like her father lately.

My mom has been in the hospital since early February and I am at a point of frustration. She has been traveling the path between normal rooms of the hospital to a room in the critical care unit several times. She has gone through many infections, taken every type of antibiotic and has earned the nickname of mystery woman from her doctors. I have visited her a few days this week while wearing a mask and gown and it is painful for me to see my mom feeling this way.

Before starting American Idol last night, Carie asked me how I was feeling about the whole situation and I couldn’t even think of a word.

At my desk at work, I have a copy of last week’s ultrasound that is in view every time I lift my head from my laptop. After staring at it, I am proud to say that she has my nose. Which may be good or bad news depending on how you look at it.

Carie did go see her regular doctor yesterday. All is well. This doctor did suggest that we start a steroid treatment next week to help the lung development. Good thing that she doesn’t play Major League Baseball, yet.

Saturday, March 13, 2010

Day 42

Dear friends,

Thanks so much for all the prayers and encouragement. There’s not much new to share in the way of developments.

After receiving the positive news on Tuesday, Brian and I were over the moon. We know there is still a long way to go and things could very well change, but right now we have a lot to be thankful for.

As the week wore on the reality of our situation once again set in. Today, I’ve been in bed for 6 weeks and the doctors are hoping I don’t go into active labor until after week 34, which is another 11 weeks away. And then we won’t have even started with baby girl.

17 weeks of bed rest! My favorite place in the world has always been my bed, but I never dreamed I’d be banished here for months on end. I can no longer go to the job I love or out on a date with my husband. I cannot cook a meal or take my dogs for a walk. My life has literally stopped, and yet everything goes on without me.

In my darkest moments, when I contemplate how my perfectly ordered life has slipped through my grasp, I feel as if I am slowly dying. All the daily activities that defined my existence are gone and I feel completely lost.

And then my Father gently reminds me that this too has a purpose as I read in Matthew these words, “If anyone would come after me, he must deny himself and take up his cross and follow me. For whoever wants to save his life will lose it, but whoever loses his life for me will find it.”

Right now, we have only experienced the first part of this promise. Our faith in God’s supreme sovereignty placed Brian and I in the midst of a situation where everything we know has been compromised – our careers, our finances, our home, our friendships, our social lives, our family relationships – just to name a few.

So just as we wait on the future of our Baby Girl, we also wait on God to reveal a new life for us again.

Tuesday, March 09, 2010

Day 38

Quick Update: Amazing news from the perinatologist today as Baby Girl looks perfect and fluid levels are in the normal range! The plus is that I have been given a hospital reprieve for another three weeks as long as I don’t spring another leak – yippee!

If I do spring a leak, I’ll be admitted to Labor and Delivery emergently in order to take steps to prevent labor and infection, and remain in-patient until Baby Girl arrives.

The doctors continue to be baffled at what is going on. Baby girl’s growth is still on target…and the earliest measurement signs are positive for lung development. This means that I can continue to be treated locally and a local Level III NICU can most likely meet all our baby’s needs – what a relief!

Since I have zero sign of infection and have once again stopped leaking, I can stay at home on bed rest until something changes. At week 28, I will begin receiving steroids to boost the baby’s lung development. And at week 34 (and hopefully not before) we will meet her.

What can I even say…we are amazed, grateful, humbled and in awe of our Father who continues to sustain this little life in the face of insurmountable odds.

Thanks to each of you for your prayers, support, patience and encouragement. We still have a very long road ahead of us - but we are hopeful, encouraged and continue to have faith.

Carie Anne

Saturday, March 06, 2010

Day 35

Five weeks down and who knows how many to go. I haven’t written in a while because I don’t have many new facts to share and feelings aren’t my strong suit, but I will try.

As Brian mentioned yesterday, we are closing in on a new phase of this unique pregnancy. Because nobody expected Baby Wittenberg to make it this far, discussion didn’t begin until this week about hospitalization.

Prior to 23.5 weeks a baby is deemed unviable, therefore no medical measures are taken to assist the baby in after birth and thus the child dies. After 23.5 weeks, medical intervention can sometimes be effective. Minutes, if not seconds, count when dealing with a preemie, so the doctors are leaning toward having me admitted to the hospital at the 23.5 week mark.

So now, Brian and I have turned our attention to choosing a hospital. The primary consideration is the quality of the Neonatal Intensive Care Unit (NICU), but we will also have to transition prenatal and obstetric care. This is a very difficult process.

There are no real rankings and it is almost impossible to compare NICUs. The major university hospitals have much more experience in neonatal care. On the other hand, I can’t imagine trying to resume life and making the trek down to Northwestern daily while baby is in the NICU, or being this far away should something go wrong.

If any of you have thoughts or expertise with NICUs, we can use all the help we can get.

Last week, I had a sobering conversation with the head of neonatology at Children’s Memorial. With the utmost compassion, she reminded me that even with the best doctors and best technology available, Baby is not likely to survive.

The Internet provides an amazing ability to connect people. I have joined an very “exclusive” list-serve for a small group of women who experience an extended pPROM pregnancy. This past week, one women posted the following about her feelings after three weeks of hospital rest:

“If feel like someone told me ‘There is a very good chance your baby will die. Now sit alone in this room for weeks on end waiting to found out.’ I just feel lost and alone and scared out of my mind.”

Welcome to my world.

Friday, March 05, 2010

Day 34

Quick Update...Big decisions to make.  Brian weighs in today.

Carie is now in her 22nd week of pregnancy. This is one step closer to viability. We are constantly amazed about the favor that God has shown upon us in this situation. It is so difficult but we have not felt His presence through it all.

Carie was able to see her regular doctor yesterday. The baby is doing great. Once again, it got some quick pictures. This visit did confirm that the amount of fluid is down again, although a speculum exam concluded that there is no ferning or pooling. I am not even sure what this means but it left me confused.

We do have an appointment with the high risk doctor on Tuesday. Due to the fact that Carie is leaking and the fluid is down, we are pretty sure that Carie will have to go into hospital for 24 hour monitoring real soon. So Carie is currently in the process of interviewing NeoNatal departments of hospitals in the Chicagoland area. We want to make that the baby gets the best care possible once it is born. If this means that we have to go downtown for this care, we will. As the baby continues to grow and the fluid remains low, it will put additional pressure on the cervix and eventually cause Carie to go into labor. (Do I sound like I know what I am talking about? It is all knowledge passed on to me by Carie)

We have some big decisions that will have to be made soon.

Brian

Tuesday, March 02, 2010

Day 31

Quick Update: Not much new to share…mostly a clarification of our current status.

Mom and dad are back in town –yeah! With daily help from them, everything is so much easier – well as easy as can be given the circumstances.

I am using this update to answer many of the questions that have been posed in recent days…

What is your due date? Originally, the doctors settled on July 9 as the estimated birth date, but given the pPROM complication, we will be extremely lucky to get to 30 weeks, let alone 40.

What is pPROM? Preterm Premature Rupture of Membranes. In my case, the bag that holds the amniotic fluid which protects the baby and allows growth burst at 17 weeks 2 days gestation. A woman’s “water breaks” generally signals the beginning of labor and delivery.

Why did this happen? It was probably caused by an infection; however, doctors cannot answer this question definitively.

What is the difference between “sealing over” or “continuing to leak”? Medical science tells us that Baby Wittenberg needs amniotic fluid to develop properly; without it our baby will likely be born with severe abnormalities of the lungs, brain and/or limbs and survival would be unlikely. As long as I continue to leak the amount of fluid available to the baby is limited and thus chance for survival decreases.

Also, leaking indicates the amniotic bag is still torn/open. These means there continues to be an open pathway for infection between the outsi de world and my womb and child. An infection would put my life as well as our child’s in serious danger.

Bottom line is that sealing over is a game changer and is extremely rare. It would substantially lower the risks to the baby and to me as we move forward.

Can the doctors tell if the baby will be born ok? Medical science can tell us a lot, but there is no way to definitively know the impact of pPROM on the lungs or brain until birth. Between 17 and 19 weeks, when our child was without much fluid is when the lungs begin to form. The baby could grow perfectly in every other way, but be born without lungs to breathe. At a later date closer to viability, the doctors may choose to give me steroids to strengthen baby Wittenberg’s lungs in order to survive an premature birth. This is only effective if the lungs have actually formed.

What are doctors doing now? Truthfully, not much. Until I reach about 24 weeks, which is the earliest the doctors say the baby can survive outside the womb, they take a “wait-and-see” approach.

What happens at 24 weeks? Again, we are in a holding pattern. It is likely that at some point after that date they will put me in the hospital in order to monitor the baby and I 24/7.

Are you feeling OK? By and large yes. My biggest challenge is lying at no more than a 45 degree angle most of the day…Needless to say, after about 3 days my back was aching and at this point my whole body feels stiff.

We go back to the doctor on Thursday for my weekly blood work.

Thanks for the concern and prayers.

Carie Anne

Monday, March 01, 2010

Day 30

Quick Update from Brian...as baby finds new ways to make her presence known. 

Over the last few days, Carie has been experiencing something different in her stomach. She describes it as if her stomach is turning over and over. She has begun to feel the baby more consistently. This is exciting news. I wouldn’t call the baby a soccer player yet but he/she is learning.

Carie has continued to leak over the last few days. The only solution for this is complete bed rest. On Friday, I tried to think of some ideas of how to make this easier for her. So I bought a puzzle. I think I am more excited about doing the puzzle than her. Carie is a real trooper. I have never heard her complain about being bored or going stir crazy.

I am sure that my huge sigh of relief was heard around the neighborhood when Carie’s parents arrived from out of town yesterday. They have been such a tremendous help in this situation. Words can’t even describe how thankful I am for them.

Brian