Scary McBaby update with a happy outcome- please read!

This has been a really scary few days for us, but I have learned a lot that I feel like I have a responsibility to pass along to all of you. Please read this with an open mind and know my goal is not to criticize anyone, but to share with you what we have learned so far on our journey with Girly McBaby and hope that our experience can somehow help others.

One of my besties sent this to me for encouragement, it’s a little cheesed but so true.

On Friday we had the last of our bi-weekly appointments with our OB in Chicago to check the growth of Girly McBaby’s SCT. Remember- last time it appeared to have gotten smaller so we weren’t really too worried. After the scan I met with my Doctor and she told me that not only had the tumor doubled in size in the past two weeks, but that there were severe signs of anemia in her brain. Our Chicago OB knew we were planning on moving to Houston the next week to continue our treatment there, but she felt the situation was urgent enough that the probable next course of action was either an intrauteran blood transfusion, or that I would have an emergency c-section to deliver sometime in the next few days. She was going to try to get me into maternal fetal medicine (MFM) specialists in Chicago asap.

I immediately called our incredible nurse coordinator at Texas Children’s Hospital who spoke with our Chicago OB and got updated on the situation. Appointments were made for me to check into Labor and Delivery in Houston the next morning where I would have tests to confirm the Chicago OB’s findings, and then either be admitted to the hospital to be monitered on bed rest, receive an intrauteran blood transfusion, or deliver.

I called my mom to make me flight arrangements for that night. They checked my cervix and did a stress test on the baby to make sure I was ok to fly, while Pete ran down to the pharmacy in the building to get my steroid prescription to speed up Girly McBaby’s lung development in the likely occurrence I would be delivering the next day. Side note: Steroid injections hurt like hot devil fire. The nurse injected it into my butt while I leaned over a table and I nearly donkey kicked her in the ladyparts. Brutal.

Pete and I rushed home and I packed up as much of my stuff as I could and drove to the airport to make my flight.

At 8am on Saturday I arrived at St. Luke’s labor and delivery where I was met by Saint Carmen- Nurse Coordinator and general kind shepherd of scaredy mothers everywhere. Pete is in finals so my best friend Laura came with me. Pete had a noon flight booked and was waiting on standby to hear whether or not he needed to fly in that afternoon. We met with the incredible ultrasound tech from my Houston OB/MFM’s office who spent nearly an hour thoroughly scanning GM and checking the measurements from the Chicago OB. My MFM Specialist came in and rechecked her findings.

Which ended up not being necessary, because nothing at all was out of the oridnary. The tumor had grown very rapidly in the past two weeks, but we knew from the beginning that SCT’s are unpredictable and hers is still very small for her condition. There was no evidence of anemia, hydrops, or any unexpected or concerning stress on GM. Not only would no surgery be performed, but I would be released as an outpatient. They decided they would want to follow me more closely, increasing our scans to twice a week from now on, but other than that Girly McBaby is measuring in at the 59th percentile and things are going as well as we can hope for.

My point in all of this is not at all to rip on my Chicago care. I loved my Chicago OB, and know that she and the ultrasound tech and everyone else there are incredibly capable and smart and only want the best for our baby. However, we narrowly avoided a really scary and learned an important lesson. It makes me sick to my tummy to think that if I had not known better to seek out specialists for GM’s condition, and had stayed under the care of my Chicago doctors I likely would have delivered a 29 week premature baby with serious medical complications this weekend.

I know my hospital in Chicago is a great hospital and I think a lot of families wouldn’t question what they heard from such a well respected institution. But I URGE you, if you receive an atypical and serious diagnosis for yourself and ESPECIALLY your babies, please do your research. Find out if the Doctor you are talking to is a specialist in that field. Find out where the research and best work is being done on your particular issue. I know not everyone has a homebase near a facility like TCH, but you can always contact these leading hospitals and ask for a second opinion before proceeding.

Not all levels of medical care are the same.

You have to be your own advocate to make sure you are receiving the proper care.

Just because a hospital has an amazing labor and deliviery program and is well-equipped to deal with premies, doesn’t mean they are as qualified on more rare neonatology issues. Just because a hospital has a great cancer treatment center does not mean they are experts at treating childhood cancer and so on. Texas Children’s Hospital happens to be one of four Children’s Hospitals in the US that has done extensive work with SCT’s, but that doesn’t necessarily mean it is the go-to for all Children’s medical issues either. It is so important that you educate yourself on the care you need and the care you are receiving.

I really believe that most Doctor’s have the best intentions, but sometimes they aren’t aware of what they don’t know.

In this case, the test my Chicago OB’s office used to determine GM’s supposed anemia was a test that was developed at Baylor (where my current OB/MFM is based) and it is a pretty complex test that considers many different measurements to reach conclusions. My Chicago OB just didn’t realize that the test requires you to measure blood flow several times and is super sensitive to baby movement, and once scanned results should be cross checked against other warning signs in the baby before a diagnosis is reached. I would generally rather people be over cautious, but when alarmism could have lead to such a devastating outcome, namely GM’s already challenging medical diagnosis being compounded by prematurity, it just scares me to death that this could happen to someone else.

But thanks to the unbelievable care we feel blessed beyond measure to be receiving from Texas Children’s Hospital- all is well. It was a stressful few days, but I have used the extra time to get settled into our living quarters for the next few months. Girly McBaby is snuggled up tight, kicking my ribs, and preparing for her late July debut as planned. Pete will finish up finals in Chicago on Tuesday and then join me down here. I am sad we didn’t get to have the Chicago send off we had planned on to say goodbye to some precious friends there, but I am mostly just so thankful that this misdiagnosis was caught, and that Girly McBaby is fine, and we are still getting through with the amazing support of our friends, family, and all of you!

And again, I hope everyone reading this knows that I have nothing but the utmost respect and appreciation for my Doctors in Chicago. I just pray that this scary situation we went through can help another family going through a similar ordeal better advocate for themselves and their babies, because I know first hand from our so-far wonderful experience at Texas Children’s Hospital what a huge difference that can make in the health of you and your most precious nuggets.

And afterall, aren’t we all just a bunch of otters trying to protect our pups?

Comments

  1. Rachel May 23, 2011 at 7:13 am

    That is SO scary, but I’m so glad to hear you are both ok!

  2. Shaina May 23, 2011 at 7:20 am

    Oh Bailey, so scary! I’m so glad that you and Baby Girl are a-okay though. What a relief! Also, it’s so great that you already had a relationship with Texas Children’s Hospital so you had someone you could call and trust. Whew!

  3. Catherine May 23, 2011 at 7:28 am

    Wow, that must have been terrifying. I’m so relieved you’re both doing well, and that you TCH was there to save the day.

    I always trust doctors, so this is a good reminder that “not wanting to offend someone” is no reason not to get a second opinion. It sounds so dumb as I type it, but I really think I would have made that mistake. I so appreciate you sharing this journey with us.

  4. Chedva May 23, 2011 at 7:39 am

    Oh Bailey, you’re such a hero. Big, big hug. And kudos to you for having the strength to share all this.

  5. Helena May 23, 2011 at 8:31 am

    what a scare!! Happy all went all right and that your little princess is doing ok. Thanks for sharing these moments Bailey, Im sure It cant be easy for you guys.Sending you lots of love xx

  6. alison@MLHP May 23, 2011 at 8:31 am

    SO glad to hear you are hooked up with TCH. I worked with the Diabetes Educators when I was in medical sales, and they. are. incredible.
    I know BMc is kicking that much more b/c she knows she’s home, in Tejas!

    Really do hope to see you, and pat your belly (you know, b/c that’s an OK thing for first-time meetings ;) We’re flying up in three weeks, so I’ll stay in touch.

    Baby hugs from Brazil,
    ag

  7. Johanna May 23, 2011 at 8:38 am

    So glad you and the baby are thriving. That is some scary stuff BUT I can honestly tell you that now with the stereoid (that does hurt like a banshee!!!!!) you will be in good hands. And if she makes an early debut…that’s ok, too. She’ll be a fighter just like her mama. :)

  8. deidre May 23, 2011 at 9:08 am

    i’m so glad you and GM are alright! that is wonderful news. and it’s been 4.5 years, but i remember still how bad those shots hurt. i’m thrilled she’s still cookin’ and that they’re taking great care of you both. hugs!!

  9. Ali O May 23, 2011 at 9:21 am

    I’m so glad you didn’t have to deliver early! Every extra day in there is better for your little girl.

    Your story is eerily familiar. I was once in a very similar spot, experiencing major complications in my first pregnancy under the care of NMH physicians. Under their care, I spent three months on bed rest and then our son was born at 31 weeks and spent 6 weeks in the NICU. After the dust had settled, my NMH OB said, “Well, we’ll consider this a good outcome and do the exact same treatment next time.” I’m so glad I wasn’t willing to accept that! I found a specialist at the University of Chicago who had a completely different approach to my problem and my next pregnancy I made it to 38 weeks (in spite of the same issues). I’m now 27 weeks with our third and doing perfectly.

    NMH doctors like to spend a lot of time telling you how great they are, but in the end, their results for my baby (and yours!) were not on the mark. /rant

  10. Leah May 23, 2011 at 9:22 am

    thanks for sharing that with us & wishing you all the best!

  11. SaraSue May 23, 2011 at 9:36 am

    Glad things are ok and GREAT advice. Thanks for taking the time to share.

  12. Allyson May 23, 2011 at 9:56 am

    Bailey, I’m so sorry all of this happened to you, but so happy that you made it out the other end! Praying for you and the baby!

    And congrats on being back in Texas, the most wonderful state!

  13. Annina May 23, 2011 at 9:57 am

    Bails,
    You are an amazing mama. It’s crazy how your maternal instinct has kicked in through this entire process and imperative decisions, if only there were more mothers in the world like you.
    I’m so happy to hear that you and McCarthy Babe are alright, can’t wait to meet her and see what an amazing mama you will be bec you already have been the past months.
    Steroid shotters are ouch, big hugs to you guys!

  14. KP May 23, 2011 at 10:28 am

    I’m so glad little baby lady is a-ok!! I can’t wait to meet her!!!

  15. Jessica[Shimmer+Silk May 23, 2011 at 10:29 am

    So scary! So glad to hear you are both OK. Your strength is very inspiring. We’re all thinking of you and your precious little girl!! xox

  16. Caitlin May 23, 2011 at 10:34 am

    I’m soooo happy to hear that you, Pete, and baby are OK. What an ordeal that was! As always, sending good vibes and thoughts your way.

  17. Lori May 23, 2011 at 10:46 am

    Yikes and thank goodness for specialists! I am so happy to know that baby is still cozy. Every extra day is a blessing.

  18. Melissa May 23, 2011 at 10:51 am

    Your maternal instincts are coming through, and you are right to trust them! Just focus 100% on taking care of McBaby!

  19. Teri May 23, 2011 at 12:15 pm

    (((((((((Cyberhugs))))))))

    You are so absolutely right. I have a special needs son, and when we’ve seen doctors that aren’t familiar with his disorder they either don’t take tinges serious or freak out. You and hubby are your daughter’s number one advocate and at times second and even third opines are warranted.

    You guys are going to be great parents!

  20. Brandie May 23, 2011 at 12:29 pm

    Bailey I am so happy for you and your Mr and little GM! I learned the same lesson on being your own advocate in health care a few years back, sadly my story doesn’t have a little nugget baking inside me at all in the future but I do have my life I can finally enjoy and live pain free.

    I pray the best for your Mr, you and little GM! Your posts are an insperation and highlight of my week. You are truly amazing and beautiful person! ( ok sappy time over) Welcome back to Texas!

  21. Maggie May 23, 2011 at 3:43 pm

    I am so happy that Girly McBaby is still safe in your tummy! c: I’ll keep praying for you all- and good luck to Pete on his finals!

  22. Mackenzie {Design Darling} May 23, 2011 at 9:27 pm

    Stellar advice — do not doubt for a second that you did the right thing in sharing your story with all of us. Inspired by your candor and grateful for the happy outcome. xoxo

  23. Christina D May 23, 2011 at 9:55 pm

    I am so sorry to hear about this unfortunate experience Bailey. That picture was so poignant to me about being strong when the need arises. You are tenacious with a heart of gold….I am so proud you never give up. My hubs has dealt with debilitating back pain since last fall with many twists and turns and sometimes you cannot even cry when shit is so bad! You just want to be immobile. You inspired me yet again to research and find him the best treatment. I know mini-Bails is going to be such a rockstar….so many people are sending you love! Thank you for continually sending it right back:)

  24. Iris May 23, 2011 at 10:34 pm

    Glad all is as well as could be, and sending good vibes to McBaby! How blessed you are to have the talented network of support both medical and through friends and family to help you guys get through this!

  25. A Casa da Vá May 24, 2011 at 2:45 pm

    Wow this is serious! So glad you were able to get a second opinion and got to keep your baby in your belly for longer! I wish you all the best!

    Hugs & kisses from Rio!
    http://acasadava.blogspot.com

  26. Sarah June 2, 2011 at 5:58 pm

    How did I miss this post?

    I’m so sorry that you had such an awful scare on top of all the stress you are under right now. I am thinking of you and your beautiful McBaby and sending all my healing light and love.

    And YES to seeking out the right care. My Charlie is due for his cranio facial surgery on August 9th and we are so fortunate to have one of the best surgeons in the country working on him. I know that they are taking every precaution and giving us the very best they have to offer.

    Thinking of you always,
    Sarah

  27. Amy June 6, 2011 at 10:57 am

    Bailey,
    I am SO glad everything is OK with you and your little McBaby, I have been reading along since the wedding but not posting (bad blogger I know). I’m also preggers with our first little one (a boy), due in August, and I can only imagine what you’re going through, stay strong and good for you for sticking up for getting a second opinion. We are our own best advocates! Sending you lots of well-wishes and mamma love. *Amy

  28. Nora November 1, 2013 at 6:10 pm

    Bailey,

    I want to thank you for sharing your story! I am going through a difficult pregnancy and myself and my baby boy need to be closely monitored twice a week until his delivery. I had a similar scare to yours at 28 weeks where I was hospitalized, given steroids, and told that I might have to deliver that night. That was a month ago and now baby boy is 32 weeks. I thank God for every doctor’s visit where he maintains the status quo and can stay put a while longer, they are aiming for a 36 or 37 week delivery.

    It is so comforting to know that other mothers have gone through trials during their pregnancies and still manage to have healthy beautiful children, like your Grace. The eloquence, insight and grace with which you handled a difficult situation is to be commended. Thank you for sharing your story so that other mothers like myself don’t feel so alone in the scary, yet amazing experience of pregnancy!

    Congratulations on upcoming baby number 2!

    Nora

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