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

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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.

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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 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.