October 30, 2011

Graft verses Host Disease

We've had a hard week over here. Kate was "off" most of the week. She never had a fever, which was great, but my mom intuition just knew something wasn't right.

At clinic on Wednesday, her liver levels (specifically her AST and ALT) were slightly elevated which can be an early indication of a viral infection. We sent off several viral studies but everything checked out ok. Thursday was a very off day - tons of crying, lots of sleeping, and a baby that was just so far from Kate's post transplant normal.

We had clinic again Friday and all of Kate's liver values are extremely elevated. Her AST is 784 and her ALT is 598. If you know anything about liver values you know that is so incredibly high. Her bilirubin is also elevated as are several other counts.

As of right now all labs point to graft verses host disease (GVHD). While GVHD is common, I was pretty shocked that we skipped all of the "typical" signs they tell you about (skin rash, GI issues) and went straight to pretty major liver issues. Kate was started on steroids as that is the first treatment of GVHD and the plan as of right now is for her to have a liver biopsy (yet another procedure under general anesthesia) Tuesday morning to either confirm the GVHD or confirm other liver issues.

The steroids have been hard as Kate can't seem to really get comfortable and sleep peacefully while on them. We've had several long nights (hence the blogging at 1:30 am) this weekend.

The GVHD diagnosis has me in a funk. I know I need to snap out of it but, right now I am just over seeing all of the other BMT kids we know from our stay excel, move to less clinic visits, and just over all do amazing with their transplants. I am so happy for them - really, I am. I don't want to see any of these kids struggle. But, it's just hard to watch your child be the one who has been back in the hospital, who still has low blood counts, who is battling GVHD, and who seems to be having such a hard time with the entire transplant process.

I was totally aware of all of these complications when we entered into the BMT world. But, if I'm being honest, I never thought we would deal with them. I just always thought Kate would sail right though. Obviously that has not been the case and it's hard to realize, and accept, that we are just not on the fast, complication free track to recovery.

I'm also finding myself very bitter towards moms of healthy kids who freak out over every little thing. This is ridiculous as it is always hard to see your child sick - no matter how major or minor. Fever is no fun, colds are hell, stomach bugs are miserable, and sleepless nights are exhausting for every parent. I am constantly reminding myself that our situation is abnormal and that it is normal for parents to freak out about normal things. It's a constant struggle for me though - I know it is driven by jealousy and I need to work on not letting my situation and struggles discredit the day to day struggles my mom friends are facing.

I also need to keep reminding myself it could be worse. Yes Kate is struggling. Yes it feels like we are dealing with one thing after another (because we are). Yes it is no fun and stressful. But, Alex and I are blessed. We have a roof over our heads, food on the table, amazing jobs that allow us to not have financial worries and allow me to take so much time off to focus on Kate, and we have an amazing support system.

Now that I've gotten all of that out, if you have it in you, we could really use prayers for Kate, her liver, and the GVHD. I'm ready for my happy girl to be back!

- Posted using BlogPress from my iPhone

October 25, 2011

Pear Tree Greetings: Holiday Card Giveaway!

It's that time of the year again! Time to start thumbing through your favorite pictures, browsing through countless designs, and hope you find the perfect Christmas card to send out! If you are anything like me (hello type-A planner), you are in full force Christmas card search mode!





I started stalking the Pear Tree Greetings website almost two months ago waiting for the new 2011 Holiday card designs to magically appear!  I was blown away as new designs were added.  I really believe this set of designs is hands down the best offerings from PTG yet!

Every year I search for a card that perfectly captures the past year of our lives.  Last year, I went pretty casual with our card and showcased many pictures about our new life with Kate!  It was so fun to show off so many different pictures of Kate and how much she had changed in her first four months!

This year I am so torn on the best way to capture our year; how to share a piece of what 2011 has meant to our family.  We have had such an emotional year filled with the joys of parenthood, the heartache of a life threatening disease, the agony of watching our baby girl fight for her life, and the miracle of a second chance - given to Kate by an anonymous donor

Do I simply share an amazing picture of our miracle baby showing off her wonderful personality?  Do I look for a card where I can "journal" a bit of what this year has meant?  Do I try to find something that can showcase multiple pictures?  Decisions, decisions...

Thankfully Pear Tree has a beautiful card to fit each of my possibilities.  I've spent hours some time using the new personalization tool so I could visualize exactly how each design would look with specific pictures and such. 

I loved designing the Christmas Charms card!  One of our family photos from June fit beautifully in the center and I love that it is an "all in one" card making it very easy to address and mail!



Personalizing the card was super easy too!

Ultimately, I decided to go with more of a "story board" card that allowed me to share the journey our family has been on this year.  Y'all will have to wait until December to see the card we selected - I don't want to spoil the fun for our friends and family who will receive the card in the mail!!

Pear Tree Greetings is offering one of my readers a $30 gift certificate towards their Holiday card purchase!

Mandatory Entry: Leave a comment on this post telling me which holiday card you would love to send out this year and why!  You must include a valid email address so I can contact the winner!

Addition Entries - one additional entry each:
*Become a follower of We're Finally Three.  Leave a comment on this post letting me know you follow us!

*Become a Facebook fan of Pear Tree Greetings and let them know that We're Finally Three sent you their way by writing on their wall.  Leave a comment letting me know you "like" PTG on FB!

*Tweet the following about this giveaway: "I want to win a $30 holiday card gift certificate to Pear Tree Greetings! @PearTreeGrtngs @LindseyB34 #giveaway". You must tweet this exactly (including mentions and hashtags).  Leave a comment on this post letting me know you tweeted about the giveaway!

*Blog about the giveaway!  Your blog post must include links to both Pear Tree Greetings and this giveaway on We're Finally Three.  Leave a comment on this post letting me know you blogged about the giveaway!

This giveaway will be open until Monday, October 31, 2011 at 5pm CST.  I will select a winner Monday night and let y'all know who won by Tuesday!

Good luck!

This post is sponsored by Pear Tree Greetings. Pear Tree Greetings has helped tens of thousands of customers celebrate life’s shareable moments with a collection of uniquely personal, high-quality greetings and stationery.  Pear Tree Greetings offers a full line of photo cards like Christmas cards, invitations, announcements, address labels, save-the-date cards and dozens of other high-quality paper products, so you can seize every opportunity to connect with others. Custom greetings made simple, affordable, and absolutely keep-worthy.

October 21, 2011

Things I Don't Want to Forget!

I read a wonderful post from Katie over at Loves of Life this morning and after swooning over how precious Emeline is and freaking out that Kate is so far from advanced in the speech area I decided that I wanted to borrow her idea and jot down some things Kate is currently doing that I just don't want to forget.  Thank you for the inspiration Katie!

So, here are some things I don't want to forget about my sweet 14 month old who is a walking miracle!

*Kate loves music.  I'm talking completely obsessed.  She claps to the beat of any and every song (this is new - started this week).  She has much more rhythm than her momma. 

*Girlfriend loves to dance.  And she doesn't need to hear music to bust out her moves.  Her favorite time to dance is when we are waiting in clinic and other patients/ parents are paying her attention.  It's as if she knows she's the center of attention and needs to bust a move to show off!  Lately, her dancing starts off by shaking her head (it looks like she's saying no).  Quickly, the dancing takes over her sweet little body and she gets her grove on. 

*Every evening, when she hears the garage door open, she drops whatever she is doing and waits at the landing for Alex to walk in.  She loves her Daddy so much and is filled with complete joy when he gets home. 

*Despite not saying any words yet (insert mom freak out here) Kate loves to talk.  She has her own language and babbles non-stop all. day. long.  I cannot wait until I know what she is trying to say.  I can tell she gets frustrated when she wants something and is babbling to me but I just can't understand.

*Toothbrushes are by far her favorite thing right now.  We have to do a special mouthwash daily and Kate gets so excited when she sees us getting her mouthwash out!  As I type this, Kate is playing in the living room with a toothbrush hanging out of her mouth.  Maybe she's a future dentist?  All I know is that I will not argue with a child that is obsessed with dental hygiene!

*Around 6pm Kate is due for two medications (zofran and blood pressure meds).  Alex is always home, and usually holding Kate, when I attempt to give her the meds.  Without fail, she gives Alex a giant hug and covers her face.  It's as if she is loving on him in hopes of getting out of taking her medicine!

*Any and everything gets a hug.  The dogs, her toys, her nurses.  Anyone!  I'm pretty sure she would hug strangers if she was able to be around them!  She carries her babies around loving on them most of the day and will give them a big kiss if you say "KK, give your baby some sugar."

*She is always so excited to see me in the mornings and after naps!  It warms my heart when she reaches up for me.  Lately, naps have ended in tears (not sure what's up with that) and Kate wants to cuddle/ rock for 10-15 minutes before she's really ready to get up.  I am cherishing these cuddle moments as I know they will be gone before we know it.

*Speaking of sleep, a lovie, mikny blanket, and scary cat must be in her crib when she sleeps.  Scary cat is exactly what it sounds like, a stuffed cat that is so scary looking.  However, Kate thinks it awesome and pets it while she sleeps. 

*Toddler tantrums are here in full force.  If you take something away from Kate, tell her no, or do something that she isn't a fan of, be prepared for a full on fit.  I'm talking screaming, alligator tears, arched back, head hitting floor all out fit.  Thankfully distraction works pretty well to end these fits.  Like Katie mentioned, I think God makes out babies so precious and loveable so that we can see past these fits!

I could go on and on (but who couldn't go on about their kid) but for now, these are the things I want to remember

October 19, 2011

We're Home!

I'm a few days late updating but we are home - and have been since Monday evening.

Our hospital stay was completely miserable.  Kate had a really hard time with this admission.  I'm not sure if it was the fact that she wasn't feeling well, if she remembered the hospital setting, something else, or a combination of the two but, she was miserable.  She refused to sleep more hat 8-10 hours total a day (night time and naps combined), was very fussy, and you could tell she just wasn't comfortable in her surroundings.

We also ran into many frustrations during our stay.  The 9th floor (which is hematology/ oncology) is not my favorite.  I will go as far as to say it was downright horrendous.  There are no visitor guidelines so siblings of other patients were running around the halls with snotty noses, coughs, and every sickness imaginable.  The little boy in the room next to us had, no joke, 15+ people visiting him at all times every day.  The nurses weren't nearly as knowledgeable as the nurses on the BMT floor and had absolutely no clue how to take care of a BMT patient.  They didn't close Kate's hospital room door - which meant the sickies in the hallway probably made their way into Kate's room, improperly handled her line (because they are more accustom to ports verses teeny tiny baby central lines).  Ruptured Kate's "good" line and so many other things.  I was constantly closing her door, asking the nurses to wash their hands, to put on gloves, to clean her lumen every time it was used, etc.

By Monday morning I was demanding discharge papers.  As in, we will walk out AMA if you do not have signed discharge papers in my hands by the afternoon. 

BMT knew how unhappy we were but, unfortunately, there wasn't much they could do about what floor we were on.  The BMT unit at TCH is very small - only 16 beds - so it fills up quickly and hem/onc is where overflow BMT patients are admitted.  Thankfully the on-service BMT doctor agreed to let us come home Monday since all of Kate's viral panels came back negative. 

I'm praying we are not readmitted again - both for Kate's health and my mental sanity.

As if a horrible hospital stay wasn't enough, Kate decided to age me a solid 20 years this morning.  When I got her out of her crib this morning, I quickly noticed that, at some point during the night, she ripped off her central line dressing and managed to pull 3 stitches out as well.

I had a huge freak out moment (and may have sent Alex a text that said EMERGENCY CALL NOW - I realize now that might have been a bit dramatic) while I tried to figure out what to do.  I called out home health company; no answer.   I called the BMT clinic; no answer.  I called my sister (who is a nurse); no answer.  Panic set it.

Thankfully my sister called me right back and helped me figure out what to do immediately.  Then, I realized that I had our home health nurse's cell phone number so I called him.  Thankfully, he answered, talked me through what I needed to do, and came to the house pretty quickly!  Her site looks good, has a fresh dressing, and now all we can do it pray that it doesn't get infected since it was exposed overnight. 

I'm hoping the rest of the week is not nearly as eventful as the past few days have been!

October 15, 2011

Day +45: Back in the Hospital

Kate was admitted to Texas Children's last night. She spiked a fever yesterday evening which resulted in a mandatory visit to the hospital.

We waited in the ER, thankfully in a private room, for a few hours before a room was available on the heme/onc floor. We are sad that there weren't any beds on the BMT floor so we could see all of our favorite nurses.

Kate had fever throughout the night but as of now is fever free. As long as her blood cultures come back negative, we should be home tomorrow.

For now she is getting IV antibiotics around the clock and adjusting back to the hospital life. Alex and I knew that post transplant hospitalization was inevitable as 90% of BMT patients end up readmitted due to fever.

We are just praying this is a quick stay! Kate is loving all of the attention from everyone on the 9th floor. She is such a social butterfly and is eating up the fact that se can actually see people right now! At least she is happy!


- Posted using BlogPress from my iPhone

October 14, 2011

Randoms

*Kate had an awesome clinic visit this morning!  I'm excited to share that for the first time EVER (on day +44), Kate's platelets increased on their own, without the need of a transfusion!  Her platelet count is still low but, it made a 10% increase in two days!  We are hoping platelet transfusions are behind us and that this upward trend continues!

*Kate colored a picture for her donor and we dropped it off with our coordinator today.  I hope that he likes her artwork!

*I ordered Kate's "Happy Fall" cards from Pear Tree Greetings today and they are darling!  I'm not sending out many (just to close friends and family) but I can't wait for everyone to get them!  Speaking of PTG, I will be hosting a Christmas Card giveaway next week - be sure to check back so you can have a chance to win a $30 credit towards their beautiful 2011 Christmas line!

*If you've never shopped at SheShe Made, run to their website and order something!  I've gotten to know Ashley over the past few months and she is wonderful - and her clothes are precious!  We have several smocked items (she has the best prices on Anavini) as well as personalized items.  Kate is going to be quite the SheShe baby this holiday season!  Just a little FYI, Ashley didn't ask me to say anything and I am not being compensated for posting this.  I just really love to support other moms and SheShe Made is a wonderful company!

*I am going out to lunch with a few girlfriends this weekend and I am SO excited!  I have not been anywhere other than our house and Texas Children's since Kate was admitted the first time (August 9).  I cannot even begin to explain how needed this girl time is!

*My ILs are coming out for Thanksgiving which means we will have live in babysitters for a few days.  I can't wait to leave the house with Alex and hang out - just the two of us.  I'm a bit neurotic about who I will leave Kate with.  I've actually only left her with her old nanny.  So, I'm excited to have people that I trust - and that love Kate - here!  Date night here we come...in 1.5 months!

*I am in a big time indoor activity rut with Kate.  We have toys, puzzles, crafts, etc but I feel like she is getting bored.  Feel free to leave suggestions about fun things you do with your kids.  A few guidelines - we live in the city and don't have space for bigger toys and we need to avoid water activities as Kate's central line dressing needs to stay dry.

I hope everyone has a great weekend!

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October 11, 2011

Day +42: Occupational Therapy

Kate had a good clinic appointment yesterday.  Her counts are looking good and it appears as if her body might not be eating through platelets as quickly as it has been.  We'll know for sure tomorrow when we see where her levels are.  I'd imagine she'll need platelets by Friday but, I'll take 9 days between transfusions!  At one point she was being transfused with platelets twice a day so we are making progress.  Slow progress but, it's progress!

The biggest news from the appointment is that Kate will start occupational therapy as soon as we can get a home appointment set up.  Kate is going on 48 or 49 days of not eating and as of this week, it appears she no long has the ability to swallow anything thicker than water/ juice/ thin medicines.  She is still receiving IV nutrition through her central line but, Kate is showing signs of wanting to eat; she just can't.

Last night we fed her dinner and she shoveled food into her mouth.  She loved the taste and loved being able to put things in her mouth!  It was wonderful to see.  But, after chewing the food for a bit, and attempting to swallow it, all she could do was spit it out. 

I'm glad her doctors are taking this seriously and are willing to get Kate the help she needs.  Hopefully she will be eating after just a few therapy sessions so we can say goodbye to TPN!

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October 8, 2011

Happy Girl!

Kate was in such a good mood yesterday!  She was a doll at clinic, got to see a few BMT friends, took two good naps, and was just so happy!

It felt almost like the "old days" before she was admitted!  She even slept in her crib from 8pm-7:15am!

In honor of a "normal" day, we had photo shoot - much like we would do prior to the hospital!  Kate hammed it up and it felt wonderful to pull my camera out and be a little bit creative.  I even edited pictures last night - that's big since I am so far behind on August and September pictures!

So, here is my happy girl!!

She decided to turn her nose up at something!

Back to smiles!

Love her expression here!  Confession - I totally missed focus on this shot but Kate's expression was to cute to disregard the picture all together.  So, I hid a lot of my mistakes by converting the picture to black and white.  By no means perfect but still pretty cute!

Peace out, mom!  I'm done with pictures!

On the recovery front, today is day +38!  Kate is doing pretty good - still very reliant on platelet transfusions and red blood transfusions.  I'm hoping we will start to see her platelets rebound soon!  Her appointment yesterday went well.  We had to see a wound care specialist though.  Kate's skin is SO sensitive and the dressings from her central line are causing pretty bad skin break down.  One spot was not looking good at all so we met with wound care and have a new plan for her dressings.  Hopefully her skin will start to heal and we can avoid infection as that would mean a trip back to the hospital.

Also, I found out yesterday that Kate's blood type will change to her donor's blood type.  It makes perfect sense but I'd just never thought about it.  It is apparently a gradual change but, over time, my B+ baby will become A+.  I am fascinated by the little things I keep learning about the bone marrow transplant process!

I hope everyone has a great weekend.  It is currently raining which is such a God send.  Texas is having one of the worst droughts ever right now and we need all the rain we can get!

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October 4, 2011

Day +34: Transition

I'm sorry I've been so MIA.  Life at home is crazy.  It's wonderful but it is HARD.  I go non-stop, all day.  I think I am more exhausted now than I was when we were in the hospital.

Before I get into life at home, I have some great news regarding Kate's biopsy results.  Prior to the biopsy, we were told to expect Kate's marrow to be pretty empty.  Our goal was to simply check that all three cell lines (red, white, and platelets) were growing at all stages of maturity.  We were also checking for the percentage donor cells in her bone marrow.  Kate shocked us all when her results came back!

Her marrow is totally full - 95% cellularity and all cell types and stages of growth are present!  But the best news is that 99%+ of her bone marrow cells are HEALTHY DONOR CELLS!!!  We are so thankful for this amazing news!  Her doctors were completely shocked at how "full" she was. Apparently it is very rare to be completely full so soon post engraftment!  Your prayers are working!

Ok, back to life at home...

I don't want to come across as complaining, because Alex and I are so incredibly thankful that Kate is home, that we are all under one roof, that we aren't in temporary housing.  We are blessed to live so close to Texas Children's.  So, we are definitely counting every single one of our blessings.

However, that doesn't make home life any easier. 

Kate is having a hard time transitioning.  We expected it.  She spent almost 40 days in a teeny tiny hospital room with someone (me, Alex, or a nurse) in the room with her at all times.  Add in the fact that she is 13 months old and dealing with normal 13 month old separation anxiety and we have quite the attached little girl on our hands.  Kate has to see me or Alex at all times.  If she can't see us, and get to us, she totally freaks out.

This has lead to lots of rocking, cuddling, and holding.  I'm not complaining about that at all - I love the time to just sit and hang out with Kate!  But, it makes getting things done nearly impossible. I've yet to cook a meal since coming home.  I've yet to clean much of anything (thank goodness for our amazing house keeper).  I've yet to really do anything other than deal with Kate's attachment issues.

On top of that, sleep is a huge struggle as well.  She slept in the bed with me at the hospital and stopped taking a paci due to her mouth sores.  So, Kate lacks any ability to self soothe now.  She is still refusing her paci and if she wakes up and can't get to me, she has a breakdown.  We are trying to transition her to her crib and have been successful for night time (as long as I run to her room as soon as I hear the slightest peep) but naps are still a challenge.  I have to lay down with her to get to her take a nap and then stay with her for the entire nap.  It helps my exhaustion as I am able nap a bit myself but it does nothing for me getting things done around the house.

I've also taken over the role as Kate's in home "nurse".  I use the term lightly as I have no medical training other than the teaching sessions I had prior to coming home.  But, I am responsible for all of her medications (which she gets around the clock - I have to set my alarm for multiple over night meds) as well as her TPN (IV nutrition).  I stress myself out about these responsibilities.  I can't chance missing a medication.  What if I hook her TPN up wrong?  What if I forget to clean her line prior to flushing it?  What if I forget to hep lock her lines and they clot?

I have notes all over the house - medication schedules, lists of the steps I need to do for everything, reminders to not forget this or that.  I have put so much pressure on myself to do all of this perfectly.  I wake up in the middle of the night wondering if I left her lines unclamped all day.  Or worrying that I forgot to give her a medication.  It is stressful to be in charge of such an important part of Kate's recovery!

We also have clinic appointments three days a week that take anywhere from an hour to 5 hours.  It is all dependent on what blood product Kate needs.  She is still getting platelets a few times a week (her platelets have yet to increase on their own - she is totally dependent on transfusions right now) and red blood ever 1.5-2 weeks.  We are praying that her marrow starts pushing out those healthy cells so she can stop getting so many transfusions.

Despite how hard life is right now, we are so thankful that Kate is doing so well so soon after transplant!  We are still struggling with eat and throwing up but hopefully that will get better soon!

Again, I hope this doesn't come across as one big complaint.  We really are blessed and thankful to be home.  I just need to get everything out sometimes!

On a different note, I have some really awesome giveaways coming up soon!  I am able to host these giveaways because of the exposure the blog gets from being ranked pretty high on Top Mommy Blogs.  We've been falling recently (I'm sure due to my lack of posting) so, if y'all are interested in more and more awesome giveaways in the future, can you simply click the badge below?  One click over to TMB is all it takes to vote for us!  Thanks!

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