June 07, 2015

Good News, and Will Both Kiddos Ever Be Well At the Same Time Again??

It's been a heck of a couple of months.

I didn't mean for the last post to be a cliff-hanger, but the last two months have probably been the craziest of our entire lives, seriously.

First, my biopsy results - the second opinion pathologist said it wasn't a tumor at all, it was totally normal endometrial tissue. I kept the gyn onc appointment, and she said getting a second opinion was exactly what she would have done, and the pathologist I got it from was exactly the person she would have sent it to. So for her, she said it "put it to rest". She was willing to do a hysterectomy if I wanted, but I've done some more research on that, and I think I'm going to hold off, at least for now.

So I'm hugely relieved about that, but the same day I got the second opinion, Baby Z was diagnosed with bronchiolitis. Since then (mid-April):

* Baby Z had to go to the ER, diagnosed with an ear infection

* Baby Z was admitted to the hospital for 4 days due to the bronchiolitis

Let me just say that an 8-month-old (who can control where his hands/arms go) in the hospital is a totally different experience than a 4-month-old (who has very little control over his hands/arms) in the hospital. I spent four days in a chair constantly saying "No, don't put that cord in your mouth!" while trying to keep the oxygen cannula cord and oxygen monitor cord away from Z, who had not a single bit of interest in the myriad toys and books we brought with us. Because, you know, they're not nearly as fun as medical equipment!

* I was diagnosed with stress-induced gastritis (inflammation of the stomach lining), literally couldn't eat more than a bite for about 3 days, have lost 15 pounds from it, and am still not back to 100%, almost 2 months later.

* Baby Z back in the ER, turns out the first round of antibiotics didn't clear up the ear infection, so he had to do a second, stronger round.

* Miss A was diagnosed with a strep infection that settled in the lower part of her GI system, after a scary amount of blood appeared in her panties.

* Baby Z developed bronchiolitis again (after having been in the hospital for it 2 weeks prior)

* Miss A's first antibiotics weren't strong enough to fight the strep, she spiked a fever and had to be switched to a stronger antibiotic

* Miss A got the stomach flu

* Literally while R was holding her and I had to cancel a work meeting 5 minutes before it was scheduled to start so that I could clean her up, we found out via text that R's dad had to call 911 and be rushed to the hospital because his defibrillator had to shock his heart out of an abnormal rhythm while he was home alone

* R's dad had to call 911 and be rushed by ambulance to the hospital for a second time 5 days later

* We had 10 blissful days during which no one required medical attention - yea!

All of that happened in literally the span of 4 weeks. It brings us to two and a half weeks ago, when:

* R's dad had heart surgery

* Baby Z developed another fever and his 3rd round of bronchiolitis in 5 weeks

* Baby Z's fever spiked to 105.5 during a nap, had to be taken to the ER, was X-rayed and diagnosed with pneumonia (for the 2nd time in 5 months)

* We drove him 90 minutes to a pediatric pulmonologist, who ordered bloodwork to check his immune system and more X-rays

So last Saturday, Baby Z and I spent half the day running around getting his tests. We don't have the results yet. And then yesterday he started coming down with something again. So far it sounds like all the congestion is just in his nose, but I'll probably take him in again this week to make sure it isn't a 4th round of bronchiolitis in 6 weeks.

In the midst of all that, I organized a retirement party for a former teacher of R's and mine. (My offer to do it came about a month before all the chaos started.) I was originally thinking 50-100 people would come, but thanks to the power of social media, more than 800 people were invited, and about 300 came.

And R found out he would be affected by a furlough at work, which I'm actually quite happy about. It involves one day off unpaid every other week, for at least 20 weeks. So it's basically a 10% pay cut, but right now it will actually be really nice for R to have some time off, so I'm secretly hoping the furlough will be extended beyond September.

So that's been our spring. Let's hope summer is calm and uneventful - we sure could use that kind of a summer!

April 06, 2015

Possibly '1 in a Million', In a Scary Way

So I went to my gyn about 10 days ago because I was having some intermittent spotting, which I didn't experience while nursing A.

He did an ultrasound, and everything looked normal aside from a fibroid (I think he called it "small") which wasn't a surprise, because the RE had mentioned it a couple years back during a hysteroscopy. Then he did an endometrial biopsy.

I was so unconcerned about it that I had completely forgotten I was even waiting for the results. Until he called.

It is never a good thing when your doctor himself calls.

The pathology report says I have an en.do.m.etrial s.t.ro.mal no.dul.e. (People I know may be searching online, and I prefer this blog to remain relatively anonymous, hence all the periods.) The problem with that is, it turns out, a benign no.dul.e can't be differentiated from a definitely-not-benign end.o.m.et.rial s.t.ro.mal sa.rc.om.a without doing a hysterectomy and thoroughly testing its margins.

En.dom.et.rial st.r.o.mal t.um.or.s. are diagnosed in (no exaggeration here) 1 to 2 women per million each year. Not exactly the way I want to be "one in a million".

One of the silver linings of a decade of infertility is that it's taught me to take charge in situations like this. I've found an amazing woman who has given me some great advice and put me in contact with a very highly respected gynecological pathologist, so I'll be contacting my doctor's office tomorrow to have my pathology slides shipped across the country for a second opinion. I also have an appointment scheduled with a gynecologic oncologist for next week. If the second opinion pathology report does not have good news, I may wind up going to an expert out of state instead, given how rare these things are.

From the research I've done, I do think there is some reason to be hopeful that the initial diagnosis is a mis-diagnosis. The pathology report does not mention any testing for a few things (including estrogen and progesterone receptors) that are commonly done when this is a potential diagnosis. And the report describes my tissue as "tan brown" but does not mention yellow. I've seen E.S..Ts described as "yellow tan" or yellow, but not "tan brown". Also, my uterus looked like a normal size and shape on the ultrasound, while in 70% of cases of E.S.sa.rco.ma, it's usually enlarged and with a thickened lining. (My lining was thin.)

So like I said, there is reason for hope. But either way, I think a hysterectomy is in my very near future, which pretty much settles the question of #3 on R's side of no.

You can imagine how freaked out I've been about all of this for the past few days.

Then a relative came over unexpectedly today and dropped a bombshell on us. Because of the nature of it and since this blog is not 100% private (I've posted pictures and details that people who know us in person could recognize), I won't go into all the details here.

But suffice it to say that it has rocked our worlds, especially R's, our family will never be quite the same again, and there are yet more doctor's appointments we're going to need to have that we never in a million years would have expected to have.

March 03, 2015

A Simple, Beautiful Sunday

Sunday was a simple, sweet day. It's a perfect example of why we tried so hard for nearly a decade to become parents.

I know I don't post nearly as much as I used to (I'm typing this at 1 a.m., when I should be sleeping, I realize), but there were so many pain-filled posts along the way that now I want to try to balance them out with the heaven-filled ones.

It was a few minutes after 8 a.m., and R and I were trying to sleep in. We started to hear Mr. Z make some noises in his crib at the foot of the bed.

I kept hoping that if we just laid there quietly, I could will Mr. Z to stop thinking that the rays of sunlight sneaking in through the tiny spaces between the shutter slats meant a fun new day was about to start.

It didn't work. Darn!

R got up and got him and brought him back into bed with us. We don't get as many snuggle moments where it's just the two of us and Mr. Z, like we did with Miss A when she was this little. So we drank it up, just laying there quietly on a Sunday morning, in bed with our sweet son who was smiling and giggling and enjoying the dedicated attention.

After a few minutes, we heard Miss A chime in on the monitor. She had gotten good sleep, so she woke up in a cheery mood. "DAAA-DY!!" she hollered. "It's time to WAKE. UP!!!"

We laughed. I went and got her and brought her back into bed with us. The four of us cuddled up, giggling and tickling each other. I just enjoyed us being there, marveled at the fact that we are a family, that we have children, that our bed is full of this joy and happiness and everything that I dreamed a family to be.

We had a children's birthday party to attend later that morning, so we eventually had to climb out of bed and get ourselves moving.

Everyone had fun at the party, and then Miss A got to spend several hours with her grandma and papa (R's parents) before coming home.

As she, Mr. Z, and I were in her room getting her ready for bed, at first I planned to sit with both of them on my lap and read to them like we often do. But the morning had been so wonderful that I decided we should reprise it.

So I called to R, and once again the four of us climbed into our bed, this time with "Good Night, Elmo".

First, Miss A "read" to all of us, telling us about the pictures in the book. She has enough of it memorized that she was saying it almost word for word, enough to make me wonder if maybe she really can read some of the words already. (Doubtful, I know, since she is not quite 3 yet.) Then we had R read the book again, so that Mr. Z could hear all of the actual words and get a better view of the pictures.

We snuggled some more, and then I gave Miss A a gentle reminder that I would be taking her into her room in a couple of minutes. Amazingly, when the time came, she went without complaint. Mr. Z was also cooperative about being moved into his crib.

It was the perfect ending to a perfect day. It was the kind of day we dreamed about for all those years. Those dreams are what kept propelling us forward. The most incredible thing is that they're not dreams anymore - we actually get to live those moments. They're simple, and they're perfect.

January 15, 2015

Baby Z Update: Home, Recovering, and Rolling

My apologies for not posting an update sooner. Baby Z was able to come home from the hospital on the afternoon of Christmas Eve, Christmas stretched out for us for 4 days, then I went back to work on Dec. 31 and have been working 10- to 12-hour days ever since (including all weekend days so far), hoping for my first full day off this coming Sunday. Whew!

We weren't sure Z was going to make it home for Christmas, but he was able to come home the afternoon of Christmas Eve after meeting all 3 criteria the hospital had set for him: 1) sleeping through a night without oxygen while keeping his oxygen level at 90 or above, 2) being able to stay hydrated while on only breast milk (meaning without the support of IV fluids), and 3) his secretions reducing to a level that we could manage at home, i.e. no longer needing deep suctioning with a tube down the back of his throat.

We were all totally exhausted, so we took it very easy on Christmas Eve and Christmas day. Miss A opened her gifts from us on Christmas morning, then we went over to R's parents' house on that Saturday, where the kiddos had a ton more gifts to open. And then they received yet more gifts from some friends of my mom's on Sunday, so Christmas turned into a multi-day event - what kid doesn't love that?!

In other news...

R and I celebrated our 19th wedding anniversary a few days after Christmas. Where has the time gone? I remember planning a surprise 25th anniversary party for his parents when we were first married, and now we're almost to that milestone ourselves! That phrase "the days are long but the years are short" sure is true.

In November, Miss A was fitted for a partial bridge to replace her two top front teeth, which she lost as the result of an accident at day care last May. The bridge finally arrived last week, so we took her in to have it cemented into place. Um, yeah, not so much. That lasted all of about 5 hours, and then as we were driving down the street, I hear her say, "Here, mommy, take my teeth!" I look back, and sure enough, she's holding the bridge out to me. She had managed to pop it out of her mouth. So we're going back again tomorrow, and hopefully this time they'll use stronger cement. Now I'm a bit nervous about her being able to get it out and choke on it during the middle of the night. Wish us luck tomorrow!

Baby Z still has a bit of a cough and a tiny bit of congestion, but overall he is feeling well. The doctors and nurses warned us that the cough could last for a couple of months. That was my experience when I caught a rare adult strain of RSV in my early 20s, so I wasn't surprised by that news. Other than that, he's doing well - happy, smiling, and he rolled over from his back to his tummy for the first time today!

He is growing up so quickly. R and I keep having a discussion about the possibility of #3. Actually, "discussion" is probably not the most accurate word. The conversation goes something like this, every single time: Me: "I'm not sure I'm ready to be done yet. It might be nice to have a third one." R, before I finish the word "might": "NO. NO. NO. NO. Did I mention, NO? Two is more than enough. So, NO!" I suppose he deserves points for being consistently firm in his convictions. I, on the other hand, continue to remain unsure and debate the question in my head.

Happy New Year! May it be a year that overflows with joy and happiness for you and your family!