Today is World Preemie Day- and it has a whole new meaning for our family

image.jpg

Today is world preemie day, raising awareness about the battle NICU nurses, doctors and parents of preemies fight for the littlest ones born too soon. I have so much to say, but words will fail to express my heart right now as I am still grappling with the turn of events- grateful our beautiful girl is here and thriving, but terrified. The vulnerability I feel is unlike anything I have ever experienced, with emotions ranging from joy to guilt and so many looming questions. I know they say not to ask those questions: the "what ifs" but I can't seem to quiet my head. What if she had been born at 24 weeks? Thank goodness I did the 5 weeks of bed rest. But what if we had gone for a cerclage instead of a pessary? What if I hadn't been released from the hospital? What if I wasn't allergic to the indomethacin and could have used it to halt labor just another day or two? An allergic reaction for me that would have allowed my baby to cook surely would have been better, right? It seems to be a dark tunnel of confusion, but we are doing our best to stay positive in that we had a good delivery, we were in the right place to get her phenomenal care from the start, and we need to be grateful that maybe bedrest did buy her another 5 weeks of cooking. 

They tell us we can bring her home likely end of January. Grace won't meet her until then. The holidays are going to be extremely tough (but fortunately Grandbarb already ordered her personalized stocking to hang on our fireplace with the rest of the family). Already it is exhausting pumping every 2.5 hours and getting the milk to the NICU, and balancing recovery (I was discharged from the hospital 20 hours after giving birth- I can't believe it hasn't even been 48 hours since this began to unfold) taking care of Grace (fortunately we are still staying at my parents and have their help while our house is being finished), and being at the hospital so we can understand what they are doing to our sweet one. 

Yesterday super-dad Grant and I had a chance to hold her for the first time -- and with the cpap machine removed we could finally see just how tiny her features were. Having only seen her through the Isolette, she seemed small but perfect- just a miniature baby. But holding her crushed both of us, she is so tiny and frail and hooked up to many lines and wires. I couldn't help but feel frustrated that I was robbed of the birth experience of holding my baby right when she was born, and leaving her at night to go home is the toughest thing Grant and I have ever done, but we know she is in good hands. 

This piece was sent to me by a friend, and if there are any other preemie parents out there reading, I thought you'd appreciate. I did.

image.jpg

Hospital Bedrest: Celebrating every 12 hours!!

I am now on hospitalized bedrest, until around Thanksgiving or whenever the baby comes. Our January 31st, 2016 due date is just too far away, and apparently this kid wants to be a 2015 baby. 

On Wednesday, October 14th I went into to my MFM appointment for our regularly scheduled every-other-week cervical length ultrasound, and unfortunately it was discovered that the pessary is indeed not working and at 24 weeks and 3 days, I was already dilated 1-2cms evidence on both TransV ultrasound and speculum exams. My amniotic sac is still intact but visible, so we are doing everything to ensure it does not break yet. The outcomes based on gestational age are pretty terrifying at this point.

Immediately I was hooked up to fetal heart rate and contraction monitors which fortunately showed we were not in labor and there were no contractions and baby was doing great. She is measuring huge, already at 1 lb 14 ounces (93rd percentile) which, coupled with being a girl, puts her in a more favorable odds category. Thank the Lord! Typically being just 24 weeks, viability is possible but low, with huge potential for permanent disability. Terrifying but feeling grateful we have at least made it to the point where if she were born today, we would be able to use medical intervention to try and save her (most hospitals will not before 24 weeks). Cerebral Palsy is the greatest risk right now, with 67% of 24 weeker survivors facing moderate to severe CP  disability.

After being admitted to Labor and Delivery, we kept the monitors on, did lots and lots (and then some more) blood tests, hooked me up to an IV for ampicillin, switched progesterone, and received the two doses of antecorticolsteroids for the baby's lungs and brain.   I am on circulation monitors and have been meeting with physical therapists (typically you lose about 15% of muscle mass per week on hospiatlized bed rest) as well as pulmonary monitoring and training. The pessary is still in place, but one of the most heartbreaking moments was when Dr. D admitted that in retrospect with where we are now, she wishes she would have guided us down the cerclage route. #PessaryFail After agonizing so greatly, there is a hint of defeat in the air but trying to stay positive. 

We worked with a great Neonatologist yesterday (just transferred from Georgetown Hospital so a piece of DC with me!) to prepare ourselves for the worst case scenario and receive a professional outlook on our options. While I had asked for "goals" knowing that 28 weeks significantly reduces our risks and viability is close to 90%, I was taken back a bit when they told me to just focus on getting through the next few days. Every day matters at this stage, improving viability by 2-3%. So now I am celebrating each 1% at every 12 hours (solo ha ha) every morning at 7am and at 7pm PST - one more % point in the right column! 

We have a long journey ahead. I will be here through early November at the very least, if not Thanksgiving also. The most difficult part to swallow is being away from Grace who is being taken care of by my awesome parents-  I have no doubt she will be spoiled beyond belief :) It is tough only seeing her for an hour a day, and not even being able to pick her up, but she is a good sport and hasn't been too afraid of the noisy machines or hospital setting. Grant has been superdad managing everything for the house, the baby and even packing up my toiletries so I can feel somewhat human here. And Kellydog is camping out at my brother Patrick's house where undoubtedly she is having such a blast running around with his wife Simone she will never want to come back! As we just closed on our new house on Tuesday, I am quite saddened by the realization that Grant and Grace will be moving into our new home without me, but scouring Houzz and Pinterest for design ideas is sure to kill some time :)

Thank you for your continued prayers! I have never been so scared in my life but fortunately feel blessed to have this amazing support network who has been critical to our entire family. And, if anyone is up for a game of WordsWithFriends, I now have tons of time to kill... but forewarning, I am really really good :)

Love, 

Kate #HBRDay3

Week 22: Miraculous Things Do Happen

I went into our bi-weekly scan yesterday nervous. Admittedly, I have not been good at being on bedrest these past few weeks. With family visiting this weekend- I was up and about and all over the place- not to mention single-parenting/running mad while Grant and my family were all in Europe last week. Grace is active and I am constantly torn between taking care of Baby #2 and myself, and being supermom to my toddler. 

When we first asked for prayers at week 16, the debate weighed heavily on my shoulders with such risk of doing the cerclage, so we opted for the non-FDA approved pessary. Doctors gave me between 20-40% chance of making it to viability - and we are now just two weeks away from minimal viability-- milestone #1 is near! 

As we saw at our twenty week appointment, the pessary has kept my cervix stable which was great news - I truly didn't have any expectation for anything better. We had a goal of staying above 1cm until at least week 24, but ideally week 32 minimum. But God sure does work in mysterious ways and all of the wonderful thoughts and prayers you've sent our way are working better than ever imagined- the progesterone + pessary route actually lengthened my cervix an entire centimeter! (2.5cms) All of the doctors in the practice checked and re-checked absolutely stunned by the results. Truly miraculous (and in no-part due to any bedrest as I am still averaging about 10k steps a day on the Fitbit- whoops!) 

We are not out of the woods yet, but as spontaneous cervical shortening is typically at <1.6cms, we have room to breath until our next check in two weeks-- when we hit minimal viability!

Today at our Mother's Together gathering, we had a Mission Day where we all participated in making newborn gift baskets through There With Care for mother's who went into early labor and their child is in the NICU at Stanford (born between 24 and 37 weeks). Moms who likely did not have a baby shower yet so probably needed the essentials like diapers, wipes, pacifiers, outfits, etc. Every item I placed in that basket made me so grateful that we are so close to approaching viability with baby girl #2 and made my heart ache for these mother's facing the unthinkable. I admire each mother so much, and pray we can continue to receive good news and not be in their shoes in the coming weeks- I'm honestly not sure I am strong enough.

Thank you again for all of your prayers and support - our little girls are lucky to grow up in a world where faith and friendship can show itself so beautifully. 

 

I recognize that sharing our story, and so much about my baby making parts, is extremely uncomfortable- for both you the reader, and me. But over the past few weeks the tremendous support and number of prayers we have received are the reason we are doing so well -- THANK YOU. I also feel a certain responsibility for all of those women who also face the dreadful diagnosis of "Incompetent Cervix" and are looking for more information on the pessary route - the decision between Cerclage (with 40% chance of immediate spontaneous miscarriage), only progesterone and/or bedrest - we took a huge risk going this non-FDA approved route and ordering a piece of rubber from Europe -- but it is working and I hope to provide just an ounce of hope to someone facing the same decision. THANK YOU!

 

 

Update #5 on Baby Allen #2: Mostly Good News!

As I am have been using this blog to chronicle our journey with the diagnosis of a very short cervix at week 16 and finding out we are having another little girl, updates as we made our decision between cerclage procedure and the pessary, our long awaited pessary arrival (that was supposed to be overnighted from Europe), and the "all is stable" vote of confidence 4 days after it was placed with my ever anxiety-inducing pregnancy tracker - I wanted to continue to provide bi-weekly updates as we meet with our MFM as I have been overwhelmed with the number of women who have reached out from the IC community that have been rooting for us, but also are going through very very similar situations and have asked to follow our journey.

Yesterday I went in for a cervical length check and the anatomy scan at 19 weeks and 3 days. We have 52 days until minimum viability and 145 days until full term. Great news is our little girl is doing fantastically well, measuring in the 73rd percentile at 11 ounces and everything from brain to kidneys looks to be functioning perfectly!

Making great progress!!

Making great progress!!

We also received our second trimester blood screening work back (which is fascinating to me as the state of California pays for it - very different from my 2nd Trimester screenings giving birth in D.C.) and were fortunate to find out our risks for all of the tested abnormalities were extremely extremely low. 

Now, on to my business. My cervix measured 1.4 cms which is a blessing as it means I am stable - but still with the lingering reminder that 50% of pregnancies with length measuring at less than 1.5cms at 20 weeks end in preterm birth. The risk is real but the pessary and progesterone seem to be doing their job! That said, due to the potential for it to spontaneously shorten the entire length and open, Dr. W would not allow me to fly to my cousin Mike's wedding on the East Coast this weekend and wants me to further restrict my activity a bit.

another study - if we make it to 33 weeks I would be over the moon happy as modern medicine has a 95% survival rate with babies born at 33 weeks!!! Also of note, my last pregnancy i measured in at 2.1 cms at 20 weeks, yet went 39 weeks which is encouraging!

another study - if we make it to 33 weeks I would be over the moon happy as modern medicine has a 95% survival rate with babies born at 33 weeks!!! Also of note, my last pregnancy i measured in at 2.1 cms at 20 weeks, yet went 39 weeks which is encouraging!

With so much to be thankful for after seeing our healthy (and active!) little girl, I am doing my best to stay upbeat. These past three weeks I have admittedly been more active than I should have been, but for me mentally and emotionally, at least being able to travel to Boston and Sonoma to be surrounded by friends and still feel like I was participating, even if not being active, has made a huge difference. I am discouraged and saddened that I won't be able to see all of our family this weekend - and likely will not have an opportunity to see them until after Baby #2. Fortunately, my cousin and his beautiful bride were so understanding and actually reached out immediately after they heard I wouldn't be able to come - our little family is so blessed to have the love and support of our families during this time. It truly means everything.

My #fail note from the MFM yesterday that is supposed to help me get out of my very expensive plane tickets for this weekend - will keep you posted on Virgin America's compassion in the matter

My #fail note from the MFM yesterday that is supposed to help me get out of my very expensive plane tickets for this weekend - will keep you posted on Virgin America's compassion in the matter

I am off to cancel travel reservations for the weekend (wish me luck!) Thank you again for all of your ongoing prayers-- they are working and helping us greatly each and every day!


Update #4 on Baby Allen #2

It is with the happiest of heart I share that over the past two days, we've done ultrasounds, digital exams, had blood work done, been hooked up to contraction monitors and every other imaginable test and it looks like, at least this far along, the cervical pessary cerclage is working to stabilize my cervix! Never in a million years would I have imagined that phrase to come out of my mouth - but I couldn't be more elated.

While we are not out of the woods by any means, we do have growing faith and confidence that we chose the right measure after such difficult deliberation. Today I am 17 weeks and 5 days and our baby girl seems to be doing great and we have had no further funneling, still at 1.48 cms and closed! 

The most special moment was we snuck little Grace into the ultrasound room and she had an opportunity to see her little sister for the very first time! I wasn't able to capture the moment, but Grant was holding her to the TV screen and she was pointing with delight. There is no better memory to define "bliss."

According to this pregnancy tracker, we have 158 days to make it to full term, and at least another 64 days to promising viability (28 weeks) so the count is on!! Feeling blessed to have made it this extra week and a half, just a few more to go!


Thank you again for your continued prayers, we wouldn't have made it this far without you!

The wait is over! Update #3 on Baby Allen #2

Yesterday was one for the books. With Gracen's 1st birthday party the day before, coupled with the fact that we received about 90 minutes of sleep each as she also got two molars and a front right tooth over night, we started the day pretty exhausted. Later in the morning we found out my dad was going in for emergency kidney stone lasering and then Kellydog ran away... without her collar on. It seemed we were getting punched at every turn while I eagerly clicked "refresh" a bajillion times awaiting the pessary package to be delivered that was supposed to arrive last Friday.

After a frustratingly long wait for an overnighted package (albeit from Europe) after tweeting that I was going to go stalk the UPS truck in my neighborhood, UPS actually responded with a tweet within 5 minutes and immediately had the driver drop off the pessary. Amazing customer service (though pretty funny they had never responded to my phone calls on Friday or Monday morning). The power of twitter followers :)

Anxiously, I ripped open the package covered in "extremely urgent" packaging tape and pulled out the much anticipated device that we had put all bets on to save the life of our baby girl. It looked something you'd find in the hardware store as an unidentified plumbing piece. Fitting.

The hubs got the UPS arrival notification and hopped in the car to come pick me up and within 15 minutes we were at the women's hospital. Overall, the procedure was completely uneventful and quick - almost ironic. I felt a little like a car getting a minor part installed - only this was a pretty big deal and the "mechanics" were poised but nervous as they hadn't much experience. While some discomfort, very little pain but a whole lot of relief. The pessary was in (and only the 5th the hospital had ever performed!). I could breath again. We go back in tomorrow for another cervical length ultrasound. I feel great despite some continued discomfort.

For a day that had posed a mountain of challenges, everything worked out alright. A neighbor had found Kellydog and another heard us looking for her and connected the dots so she was returned safely. Dad is doing great, glad to be on the other side of the kidney stone pain. And I feel like a huge weight has been lifted now that we were able to act on the decision that was so tough for us to make as a family. All of those thoughts and prayers your sent our way were answered. Thank you, guardian angels really do walk beside us.

Update on Baby Girl #2...

First, huge thank you to each and every one of you who sent your support earlier this week in response to my post regarding our situation with baby girl #2.  It has been one of the most challenging decisions to make, coupled with feeling a bit alone being so far from all of my friends back in D.C. The virtual support made a world of difference in acknowledging that while at times this journey feels lonely, Grant, Grace and I are blessed to never be alone with the love of so many friends, family members, and even strangers. Thank you.

As for an update: after a ridiculous amount of research (Grant was traveling in Boston so I stayed awake all night Tuesday and Wednesday hanging with Dr. Google) we discussed our options and decided on Wednesday morning to go ahead and order the cervical pessary from Denmark.

I came to the conclusion that if by Friday (yesterday) I was still above 1.4cms, we would do the pessary and progesterone combo. If we start creeping below 1.4cms, it becomes too difficult to do the stitch, as we are more likely to end the pregnancy by rupturing the bag of water. As I had been 1.8cms on Monday, I had high hopes since we also started my old Crinone 1% injections (left over from my pregnancy with Grace) until the other progesterone could be compounded and mailed to me (received and began Thursday). 

After weighing pros and cons of all options, this felt the most "right" in a situation that didn't seem to have any "right" answer.

On Friday morning I went in for a length check (silver lining of all of this: I get to see my baby girl on the ultrasound twice a week!) and while we received good news that my cervix was still closed from the outside (means we can still do cerclage or pessary as options!!) I had continued to shorten from the inside with a funnel to 1.5cms.

Dr. D and I discussed my options exhtensively. On Monday evening, she and her colleagues had held a special meeting and all concluded that they hoped that we would be game for trying the pessary. Fortunately, all parties were on the same page. Decision made.

No, the cervical pessary is not FDA approved or available in the U.S.A and has limited studies - but from my perspective the 1 in 5 risk of immediate miscarriage/infection causing stillbirth with the cerclage was just too high. As my cervix had shrunk in just 4 days, I knew I wanted to exhaust options (and quickly) beyond bedrest and progesterone. So this is where we landed. Clicked a few buttons after translating a website to order, and waited.

Even though I had ordered it on Wednesday morning, the pessary still had not arrived from Dr. Arabin in Denmark before my Friday appointment- so today I am just constantly pressing the "refresh" button on my tracking link. We had asked to pay whatever it cost to get it overnighted, apparently lost in translation (though shockingly shipping cost more than the actual device). The waiting game is a tough one. Praying it arrives here today/Monday morning so we can move forward. I'll go back in Monday and Wednesday next week for cervical checks, praying for some better results.

Right now were at about 30-40% odds for viability (24 weeks). The Doctors are allowing me travel to upcoming weddings, drive to places in the car, and interact with Grace around the living room - just not walk around much on this "couch potato bed rest". Essentially I need to be lazy, but not bedridden. The frightening reality is that if this baby decides to be born now, there is nothing we can do at this point to get her to term so it is what it is. All said, I remain extremely optimistic.

One major challenge I acknowledge: having baby #2 in California after Grace was born in D.C., I am having to constantly advocate with my new doctors how successful we were with Gracen after odds were against us. If there is anything I have learned from working in health care it is we each must be our own best patient advocate. 

Bottom line: one of the most difficult decisions I have ever been faced with has now been made, and thoughtfully so. While it is my nature to doubt the decision every other second, I am confident that we are proceeding the best we can at this point. I have faith, and that faith has been nurtured and strengthened by the prayers and support each of you has bestowed upon our family this past week. Thank you.