Wednesday, July 30, 2014

Things are looking up

As you probably recognized from yesterday's post, things were bad yesterday. I even ended up calling my OB nurse because I felt like my health was also suffering after we got the news. My BP was very high and I was dealing with serious, serious anxiety. They put me back on the BP meds I was on during pregnancy which also helps with anxiety and also prescribed me Zoloft. I'm already feeling a little more in control today just from the BP meds alone but glad I have the Zoloft if I need it.

Yesterday morning, I tried to make an appointment with the specific geneticist we were referred to, but I found out the earliest that he could see us was October. I just about lost my mind. I felt like I was in no mans land - just enough information to scare the life out of us but no one could help us get answers. I ended up calling the pediatrician's office and asked if they could get ahold of the geneticist and make something happen sooner.

As we waited for the call back, we took our precious little Sammy girl into the children's hospital to have her blood drawn. I was running on no sleep, and watching them pin her down, tourniquet her tiny little arms until they were white and poke her while she shrieked, was a little piece of hell for me. I know parents watch their kids go through far, far worse things and that this is nothing. But to me, I was just sickened and it was awful.

Our sweet, little Sammy sleeping at home after the blood draws earlier in the day.
When we got back, the pediatrician called. He said he couldn't get us in sooner, but that he had talked to the geneticist about the situation. The geneticist didn't think our situation was even remotely an emergency! And in fact had said, and I quote, that "95% of these state mandated screens come back as false positives"! I knew that there was a chance this could be a false positive but knowing an expert in this field was saying this gave me a huge, huge rush of relief. I still worry about being in the 5% but those odds are incredibly promising. I could sense in the pedi's voice that his urgency had declined after talking to the geneticist.

We also got some answers as far as timelines and tests go. Sammy had a urine collection done on Monday and her blood draw yesterday. The geneticist recommended a third test, which would require a blood draw to check for some enzyme or something (I think?) Because we had just returned from the lab, we will have to go back on Friday to have poor Sammy poked again for more blood. But that should be the end of it, I hope.

We should have the urine and first blood test back within 10 days or so and those results should be pretty telling about where we stand with this disorder being legitimate or a false positive. And the final blood test will take a month but will seal the deal either way. I pray that these initial tests are so blaringly clear that we won't have to worry for that last test and it's just final confirmation that this truly is nothing.

Anyway, there's my update on her health and I am so, so grateful for the kind words, prayers, and encouragement from my blog readers. I know that this is what being a parent is all about - being worried because you love your baby so very much.  But I had no idea we'd be going from the typical new-parent kind of worrying about things like colic, weight gain, sleeping etc to being thrust into knowing which signs to watch for in the event of a seizure, or that we must take her to a particular children's ER in the event of an emergency from the VLCAP situation.

And on the breastfeeding front, I hired a lactation consultant to come over last night. Ever since the news of the genetic test results, Sammy hasn't been latching. I figured she could sense my stress. She roots really well, hops on, but then gives up after a few seconds after attempting to latch. We've been frustrated and have been supplementing with formula while I pump. Despite that, my supply has been growing and the LC was pleased with where I was at with it. And as far as the newly developed latch issue, it turns out that we just have to entice her with a little milk on me first before she latches and she will get going on it! The LC said that once we introduced bottles, she got used to immediate reward with the milk coming out. On the breast, she has to work for it and has gotten impatient so gives up when nothing comes out in a suck or two. Why work for something when it comes out so easily from the bottle?  T his baby girl is just too smart for her own good. :) I had no idea how intelligent such a tiny little baby could be, but I'm learning every day!

We weighed her and she's finally gaining weight and her jaundice has all but disappeared. We also have clear guidelines on how much she should be eating every day - something we've been clueless about. We've also rented the LC's very sensitive scale that can tell how much she's consuming. I feel in control of breastfeeding again and it's a really wonderful feeling. I have no problem supplementing or using formula if we need to go there, and still need to top her off from time to time, but I am so glad we are back on track with it.

I'm well rested today, on my BP meds and feeling better, and I hope to finally tackle her newborn pictures to share with you all.

Again, thank you for all of the support and prayers, and please continue to pray that we aren't in the 5% of these screens that are not false positive after all. I still do worry.


  1. I am so very happy to read this post! Poor baby having to have her blood drawn, though. Still praying this is all just a false alarm!! XO

  2. so glad you and Sammy are getting the care you need! hang in there.

  3. So so happy to hear this. I have been looking it up all day and I have read the same thing... most come back normal - I pray that is the case with you!!! :D

    Also happy to hear you got some answers and in touch with an LC- it makes total sense to me. :) You guys will get the hang of it.

  4. I'm sorry for what you've all been through these past few days! It's good that the pediatrician is being thorough ... but waiting til October for answers?? No way. I hope you get some reassuring results back quickly from the first tests!

  5. I hope you are in the 95% and the positive is a false one. I pray you have peace til then and can cherish every moment with Sammy. Glad to hear you reached out to a LC, and I hope the teaching/support helps!!

  6. Praying for you and your little one!

    Lactation consultants can be so so helpful I am glad you had some help. You two will figure it out. It certainly is not easy by any means! There are supplements that can help with supply issues as well - fenugreek and some combo products call "more milk" and "more milk plus". And if you have any issues with pain due to a poor latch motherlove makes a nipple cream that works really well. And if that is not enough there is a compound prescription your OB can prescribe to help you heal that is perfectly safe for baby. I'm a pharmacist so I know a thing or two about this stuff :)

    Also, is an awesome reference for breastfeeding. I know sometimes reading up can help you gain confidence. My first daughter had a terrible latch and I ended up supplementing with her. I was more successful with my second child after the first experience and in hindsight I was so stressed about it I didn't take good care of myself and that probably didn't help either. Make sure you drink lots of water and get your calories - you're body is going through a lot and needs the extra energy to heal and sustain that little angel! And try to get as much rest as a new momma can - that always helps too :)

    And a couple more things - there are recipes out there for lactation cookies! They pretty much contain ingredients that are known to help with milk production: old fashioned oatmeal, milled flaxseed, brewers yeast as examples. I'm sure there are gluten free recipes out there you could try!

    Also, if you didn't know already thanks to Obamacare most breastfeeding support and supplies would be covered under the medical plan. So if you have not looked into that already find out if you can get reimbursed for any expenses....

    Hope my unsolicited advice is in some way helpful... prayers to your family and that everything will be perfectly fine. I was so happy to read this update today and I am very hopeful for you :)

    God Bless!


  7. Phew! Hoping for continued good news!

  8. I'm so glad to see this post! The prayers are still going your way that you are among the 95% who gets false positives. I'm so sorry it has been such a stressful time. You are a wonderful mother to Sammy!! Remember to keep taking care of yourself too (which you're already doing by calling your OB to get BP meds). <3

  9. Oh, thank you Lord! I'm so happy to hear that there is a VERY good chance this is just a false positive! I think if you had been in that 5%, you would have seen signs immediately that something was wrong. I feel so bad your little sweetie had to get her arms poked! It is heartbreaking to watch because they don't know what's going on. But at least you can have the peace of mind of those test results.

    I will continue to pray that Sammy will defnitely be in that 95%! She is a darling little girl! Congratulations again to you and your husband! :)

  10. Oops... I meant to say "if *she* had been in that 5%" :)

  11. I'm only just reading your post from yesterday. I'm so sorry you are dealing with this. Having a newborn is so incredibly hard, no-one can really prepare you for that. So to have this added stress and worry on top of it all must be so tough.
    I'm glad to hear you got some reassurance from the Drs and I'll be praying its a false positive. Both my children had to have blood drawn when they were tiny and its absolutely awful to watch. Just keep in mind that she won't remember any of it.
    Glad to hear you are taking care of you, and it sounds like the LC was a great help.

    Having a newborn is hard, and when you've been to hell and back to have this beautiful baby, its tough to think of anything being less than perfect. We're here for you!! Can't wait to see newborn pics!!

  12. very good news and your baby girl is beautiful!

  13. Great news! Still praying for you all!

    Nursing is tough. Yes, it's natural, but it's still tough. Hopefully it goes more smoothly for you now!

  14. I'm so glad to hear that Sammy's isn't considered an emergency. I like the odds of 5%, although odds haven't always gone in our favor, at least it's nice to know that the expert in the field isn't worried about it. Sammy is a beautiful baby! Thanks for sharing her picture!