bea’s health

I have an update on Bea’s health that I debated sharing but going along with our mentality of the more people thinking and praying for Beazy the better – I think it’s a good move.

As you know (or may not depending on how new you are to the blog), Bea contracted EBV which is known as Epstein-Barr Virus.  EBV is a virus that causes mono and she likely got EBV from my liver.  I must have had mono at one point (and never knew it) and it has just been living inside of me and was transferred over to Miss Bea.

The scary part about EBV is that it can really mess with your insides if the number gets high enough.  It can cause blood in your stool, your numbers to jump around like crazy and the worst part, PTLD.  PTLD is Post-transplant lymphoproliferative disorder…basically lymphoma in post transplanted patients.

Sometimes, EBV can just jump around and not cause much damage (which is what has been happening).   The number goes up, we adjust her medication, it comes down.  Then it goes up, we adjust her medication, it comes down, etc etc.

And as we are changing her meds we are hoping her liver doesn’t reject.  It is a total balancing act.

Bea had a recent major uptick in her EBV so for the first time, her liver doc called for a CT scan on April 13th to look for any swollen lymph nodes which would indicate PTLD.

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The process of the CT scan itself was scary.  We took her to the hospital, dressed her in a gown (which was NOT very cute – shame on me for not thinking to make one for her!), and prepped her for anesthesia.  Not fun.

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Watching them put Bea under was one of the scariest things that has happened.  Holding a gas mask to her face while looking at her and trying to reassure her while the whole time she is fighting.  Her eyes finally roll back but her limbs are still twitching – I don’t wish it on anyone.

After that nightmare was over we waited.  Once we were called back to see Bea they told us that when she started waking up from sedation, she ripped out her breathing tube and her IV.  Blood was everywhere and thats why she was hysterical and only in her diaper.

Overall, not an experience I want to repeat.

The rest of the day was chill.  Miss Bea got into our bed and watched one of her favorite movies – Finding Dory – while we anxiously awaited the results.

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Through the scan, Dr Campbell DID see swollen lymph nodes that could potentially be PTLD.  The only saving grace and why they can’t make a call on whether or not she has PTLD is that Bea also has a cold and sometimes when you have a cold, your lymph nodes swell.

SO – we had a repeat CT scan scheduled for yesterday (May 16th).  Bea got another cold so we had to reschedule, her next CT scan is scheduled for May 25th and hopefully we have more answers then.

In the meantime we are decreasing her immunosuppressants to help her body fight the EBV.  We have been getting labs each week and her EBV number has come back a little lower (but still higher than her normal) and her platelets and red blood cells have decreased.  Not a great sign but also could be from the cold she has.  It’s just so hard to tell.

SO – although she is picture perfect from the outside, her insides are worrying us.  A lot.  Your thoughts and prayers are always appreciated and we are continuing to (try and) keep the faith.

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#BEAstrong

Hillary

 

 

weekly wears

Hi!  I hope you all had a great weekend and a fun Mother’s Day for those who celebrated.  And for those missing their mom’s, I was most certainly thinking of you as well.

My weekends was one of the best I’ve had in awhile.  Spent time with Jordan and the girls, with great friends, and family – can’t beat it!

Here is a highlight of our week!

[It has become so fun watching Bea try and play with Poppy.  She loves her and fondly refers to her as “Poppy Sister”.  Every time she wakes up in the morning she’s wondering about “Poppy Sister” and where she is.  And from what I can tell, Poppy thinks Bea is hilarious.  It is the sweetest.]

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[We have received SO many fabric donations for Look Good Feel Good and it has been incredible!  I will do a post later this week about where we are in the process and some changes that have been made!]

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[A fun night out at Boca with our besties]

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[And my sister sent me info on this program where you go to a farm in Cincinnati and pick fresh flowers for $50/season.  It was so fun to just grab a bucket, some scissors, and head out in the warm weather with the girls and Jordan!]

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[Bea and her cousin/bestie Patrick]

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[And then Saturday night we met up with friends at Hyde Park Country Club for an easy dinner and outdoor play on the golf course :)]

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[Find Bea and Brookie’s romper HERE]

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[And such a fun Mother’s Day.  It was perfect actually.  We woke up, walked to Awakenings in HP Square, came back to the house and Jordan made brunch, played golf with my sister and then spent the evening at my parent’s house celebrating my younger sister’s birthday and my mom!]

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[One of my best friends stopped over with an amazing card and GORGEOUS flowers.  Seriously so kind and thoughtful :)]

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[And Jordan got me a card from each of the girls and himself.  Each was so appropriate and so sweet and thoughtful.  This was the front of Bea’s 🙂 ]

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[And these girl’s truly have helped me make lemonade out of lemons since they day they were born.  They are my strength and my motivation to keep going.  I am so lucky to be their mom.]

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[outtakes….]

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[Find their dresses HERE , my top HERE, and my earrings HERE.]

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xo

Hillary

 

baybay puree

How many moms out there attempted to make their own baby food but then quit because it is a TON of work (and who has time for that especially after baby #2?!)?!!?

With Bea, I did that.  I spent days pureeing fruits and veggies, sticking in ice trays, filling the freezer with bags upon bags of baby food only to have spent a TON of time doing it and then losing power and it all being destroyed.

At least I attempted, right?

It’s sad (but true) to say that this never even crossed my mind when Poppy was born.  So much work, so little time. 🙂

That’s when baybay puree saved the day.  baybay puree is fresh, natural, frozen baby food WITHOUT any preservatives or additives.  It comes in cubes to store in your freezer, thaw, and then feed directly to your babe!  You eliminate the guilt you may feel by buying jar baby food but without the work of making the food yourself.

***I also have to mention that I DO use jar baby food as well 🙂  and I don’t feel guilty.  I just feel BETTER when I use baybay because it’s fresh and natural***

baybay puree has a wide variety of flavors and stays inyour fridge for MONTHS without a worry.  You simply take a cube out, thaw in a glass bowl in your fridge and spoon it to your babe.  I even bought some reusable pouches to store these in for on the go 🙂

baybay puree is also a great baby gift idea.  A mom with a baby would love nothing more than pre-made meals for their little ones!

AND it’s owned by a rockstar of a mom!  She has 3 babes so she definitely knows her stuff!  Read her story HERE.

So check it out!!!!  You won’t be disappointed!

 

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