Joy & Pain

Last week was hands down the craziest week of my life to date – and I’ve encountered my fair share of crazy in this life!

[For those of you who are Facebook friends with me, some of this will be familiar to you, some of it will be new info.]

One week ago we welcomed Peter into our family. His birth was incredible and beautiful and everything this momma could’ve wanted after such a difficult pregnancy. It was a celebration all around because we basically know all the nurses and doctors at CPMC at this point ūüôā

The very next day (about 12 hours after I gave birth) we got a call from Nora’s daycare that she fell down and had a bad cut on her head. Paul left Peter and I at the hospital to pick her up and take her to our pediatrician. ¬†He didn’t even see the doctor! As soon as he walked into the office, the nurse took one look at her and told Paul to take her straight to the pediatric ER at the hospital I was at and to wait for a plastic surgeon to stitch her up.

Long story short, they spent the day in the ER, Peter spent the day in the nursery and I went back and forth between post-partum and the ER visiting all my babies. It was exhausting as hell. My body was not happy.

I was so emotional as it was – it hadn’t even been 24 hours since I was pregnant and on bed rest – now I’m having to watch my darling girl get glassy eyed and dazed from ketamine, while my brand new baby lay in the nursery without me. It was more than I could handle.

I had to leave the ER and go back to my room to snuggle Peter.

I went back to the ER when Nora was coming to – and watching that was even worse. She was just starting to get her words back and was writhing around. I cried and left Paul to watch over her until she was back to normal. I couldn’t physically contain her body as she writhed around so Paul took over and comforted my sweet Nora and made her feel safe.

Sidenote: Paul is the best father in the world. I don’t know what we’d do without him. He takes such incredible care of Nora.

So after that traumatizing day, you’d think things would finally settle down for our family. That’s what we thought too!

Wednesday morning the well baby pediatrician discharged Peter but told us he had a slight case of jaundice. He was confident that Peter would feed through the problem since we’re bottle feeding him donor breast milk from the milk bank on demand (the idea is to keep him eating so he pees and poops all the bilirubin out).

We followed up with our regular pediatrician the next day. She too told us the same thing – he’d likely feed through it since we’re giving him as much bottled breast milk as he wants. But he was looking really red (and if you pressed on his skin it would come back yellow) so she wanted us to come back in the next day.

At Friday’s appointment, I told the doctor how I was having trouble keeping Peter awake for full feeds. He kept falling asleep during his first burp break and wasn’t increasing his volume intake of milk. He’d also lost more weight (down to 6.5 from 6.14 at birth). She told us to head to the ER to have labs drawn and take any additional steps, if necessary.

For the second time in one week, but with a different child, we went to CPMC’s pediatric ER. The staff were wonderful and asking after Nora.

The on-call doctor wanted to test Peter’s bilirubin levels and asked if we wanted to draw from the vein or do a heel stick. I opted for the heel stick assuming it was less invasive and painful for Peter. Ummm, not sure about that decision. The heel stick is cruel. I was in so much pain watching them milk his little heel for two vials of blood. All the while he was wailing in my arms. I felt so helpless. Then I realized that they did 4 or 5 heel sticks on him when he was in the well baby nursery (to check his blood sugar b/c I had gestational diabetes and to do his newborn state screening). Ugh, the tears welled up in my eyes.

It felt like an eternity before the results came back. We found out his bilirubin level at 3 1/2 days old was 21.8. The thing about bilirubin levels is they’re assessed based on the number of hours old your child is. So, 21.8 in a 10 day old is very different than 21.8 in, say, a 2 day old. It’s sort of a sliding scale. His number was high enough to classify him as “high risk” so he¬†was immediately admitted to the NICU and started on full blast phototherapy. He had the overhead lights as well as the blanket. They kept him from Friday afternoon until Sunday afternoon. It was very difficult to come home without Peter on Friday. I felt so empty.

His level came down nicely from 21.8 to 14.2. On Saturday afternoon, they removed the overhead lights and just had him on the blanket. His levels still decreased – but not as dramatically. By Sunday morning it was down to 13.7.

Once again we were discharged and told to keep an eye out for listlessness, decreased interest in eating, not stooling or peeing etc. We had another follow-up with our pediatrician today and we’ll go back in again on Wednesday. All is looking good at this point.

I’m trying to be brave and strong but I’m terrified for my baby. I know in my heart he’ll be fine and we got him under the lights at the right time. But of course, I still worry that there may be some long term impact.¬†Our pediatrician said had we waited any longer, he may have need a blood exchange or worse, he may have had brain damage. A super scary statement, but the moral of the story is he got the attention he needed, when he needed it. Very grateful our pediatrician monitored him so aggressively and will continue to do so.

So, that’s an overview of our insane week. Filled with the highest of highs for a parent as well as the heart aching lows. I pray that the rest of the ride will be smooth from here…

 

Hello, I Have Cancer….

I wrote this two years ago and just came across it in my draft posts. I added a little bit at the end to bring it up to date. Enjoy:

So I was watching the Tig Notaro Netflix documentary and I decided it was high time for me to write my own reflective story. So here goes:

Hello, I’m infertile. ¬†I thought the very worst thing in my life was that I couldn’t get pregnant. ¬†For years my husband and I tried. We tried the old fashioned way. We tried the least invasive way. We tried the middle of the road invasive way We tried the most invasive way, multiple times over. Yet no pregnancy and no baby. ¬†I wept and I wept every single month that we failed to get pregnant. And I say “we” loosely. ¬†When you struggle with infertility, it quickly becomes an “I” game, not a “we” game. I had to do all the shots, I had to take all the hormones I had to check my underwear everys single time I went to the bathroom praying that my period wouldn’t show her nasty face. Sure, my husband was also infertile in a way — but he wasn’t¬†physically going through anything. It was all on my shoulders and I was failing, miserably.

And after three years of infertility treatments, including 10 IUI’s with and without injectables and 4 IVF rounds including a few frozen embryo transfers, we still were without a child.

It was the worst kind of hell a person could be asked to live through.  I was working full-time at a very demanding start-up company.  I was juggling my personal hell with my professional goals.  It was horrible. I was miserable. I thought it was the very worst thing that could ever happen to me in my whole entire life. And then I was diagnosed with cancer.

If I could go back and whisper in my own ear, here’s what I would tell myself.

Andrea, hold tight to Paul even though you’re mad that he doesn’t feel “in the mood” and your ovulation window is closing. Hold tight to him¬†because you can’t have a baby anyway. Hold tight to him and love him purely. You are about to find out that having a baby the old fashioned way isn’t an option for you. So hold on to this connection as long as you can. Nobody really talks about it, but having sex “on demand” is horrid — it can break a couple in half quickly. So hold tight to this loving man who appreciates you and your body, even though it hasn’t yielded a baby.

Andrea, you’re now 8 months into your fertility journey. Keep your head held high. You’re doing the right thing. It sucks to have to give yourself shots and that you cringe every time a friend posts her ultrasound to Facebook announcing her pregancy. Remember, she doesn’t know what you’re struggling with infertility because you’re intent on keeping it a secret from the world.

Andrea, why are you still keeping this a secret? It’s now been 3 years since you started this journey. your medical expenses have topped out over $100,000 and you’ve given yourself over 1,000 shots to the belly. Don’t you think it’s time to share this complete fucking hell with somebody?

Andrea, don’t you feel so much better now that you’ve told your family what you’ve been struggling with. Honestly, this has been the WORST thing imaginable. But it’s been really nice to have their support. You feel a new sense of energy and sticktuitivness, Ready to conquer the next hurdle.

Then you feel the lump. You talk to Paul about it but try to brush it off. You talk to your fertility nurse about it and try to brush it off. ¬†Then the lump persists. You can’t ignore it. You go to the doctor and she fells it and orders some follow-up tests. Still, in your mind, you brush it off. What.could.be.worse.than.3.years.of.infertility?

Breast cancer.  It was laughable to me when it happened. Fucking hilarious. Seriously, for real?

After all that’d I’d been through, I got cancer. Wow.just.wow.

Andrea, just hold on a little while longer. 2 more years. You can do it. You can handle having your breasts amputated. You can handle surgical recovery. You can handle chemotherapy. You can handle your body being reduced to a lump of shit with no muscle definition or endurance. You can handle testing your marriage, yet again. You can handle it all.

Andrea, you can handle it all — but you will have your moments. You will have those times when you dont want to be the superhero. When you don’t want to smile through the tears. When you dont feel like asking another person how THEY feel. When you want to be selfish and cry. and weep. and weep. and weep. and wallow.

Andrea, your beloved dog will die unexpectedly just as you are feeling like yourself after chemo is finally done. This will knock you an on your ass. You will question everything that you thought you understood in this world. You will become angry. More angry than¬†when you found out you had cancer, You will be sad. So sad. Sadder than when you couldn’t have a baby month after month after month.

You truly thought you’d been dealt the worst of the worst. First the infertilty, then the cancer, then your fucking dog died. What next? How much lower can you go?

Andrea, you will look up through your tear-drenched eyes and see the love that your husband has for you. You will realize he is all you need in this world. Baby, no baby. Dog, No dog, Cancer, no cancer. He is your salvation. Stop taking him for granted. He is incredible. Look no further. He’s been at your side the whole time. Quietly and not so quietly rooting for you. Whether you know it or not. He’s been your biggest fan.

Andrea, you’ll get the type of cancer that’s incerdibly aggressive — BUT it’s the kind with no aftercare for 10 years. You can hop yourself up full of hormoes and still carry a pregnancy.

Andrea, you will become pregnant and enjoy every single second of it, including the birth.

Andrea, all of your wishes and dreams WILL come true and you will be happier than you could’ve ever imganined. You will want to bottle the emotions because they’re like crack. You could make a fortune selling this feeling to other people.

You are one lucky son of a gun. What a long strange trip it’s been.

Post script – you get pregnant for a second time and almost lose the baby at 22 weeks. Life seems likes it’s at another all time low.

Andrea, hang in there. After an emergency surgery and nearly 8 weeks of hospital bedrest, you’ll get to go home and serve another 7 weeks of bedrest. But at the end of the day, you’ll get a second baby who is perfect.

In the end, you’ll end up with a daughter and a son.¬†They are perfect in every way.

Andrea, your marriage is still intact and strong. Hopefully the shit show the past 7 years will become a distant memory very soon…..

xoxo.
Me