Monday, May 30, 2011

A very good day

For most people, the day that their child is born is one of the best- if not THE best- days of their lives. For those of us whose children were born too soon, it's not the same. It's something that my preemie-parent friends discuss frequently. The days leading up to our children's birthdays often bring overwhelming feelings of sadness, fear & sorrow.

Yesterday was the anniversary of being admitted to the hospital. Today was the day I knew he was coming soon. Even though I was keeping things from the doctors so we could have as much time with him as possible, I knew it wouldn't be long until the labs revealed things were headed south quickly. Would it be my blood pressure or kidney failure that did it? I didn't know. But neither were going to be delayed much longer.

Tomorrow at 11:22 am, Robbie will be three years old. The day brought the single biggest source of happiness into my life, but it was a day of terror more than celebration. Nothing can ever change that.

However, there are things that mitigate the sorrow: My son's smile. The way he throws his head backward when he laughs. When he grabs my face to plant a big slobbery kiss on me. Two of the biggest things that continue to amaze and thrill me are simply watching him eat and drink.


Eat and drink he does. It was more than a year ago when we started to try to wean him from his tube feedings. We had success and then failures. Then more success and more failures. Eventually eating became "normal." He asked for snacks, enjoyed meals. Neither of us cried at the site of a spoon or a bowl anymore. But drinking was even harder. He would sip occasionally, sometimes even tease us by downing 2 or 3 oz in a day. But then he'd go weeks without so much as allowing a cup to sit on the table near him. I wondered if it would ever happen.

We eventually weaned him to just water in the tube. He could eat enough to maintain his weight, but he just wouldn't drink. Every once in a while, he'd slip and prove to me that he could. He'd get really hot and down 4 oz in a sitting, for example. I tried to push him a little, but still keep him alive. He would backslide and all the experts would encourage me to add to his tubings again. I kept thinking I needed to push just a little harder, but when he'd have a bad day or three, I'd get nervous and give in to the pressure.

But at the end February I finally reached my breaking point. I always encourage parents to listen to their instincts, but I had been ignoring my own. I needed to give him a chance to make it. On February 27, we tubed Robbie for what would be the last time.

The first few days were  pretty rough. He would drink only water, and not much of that. 7oz, 9 oz. Then we had a "good" day- 12oz. But then another bad- 7. I got nervous. Could he go a 4th day? He was still wetting, still crying tears, still sweating, still running around like a typical crazy toddler- no outward signs of dehydration. David and I wrung our hands a bit, but moved forward. He drank 17oz. Not that 20 that the experts wanted, but it felt like gallons. Then he had another bad day- 7oz. But then another 17 again. Back and forth it went for weeks- sometimes he'd have 2 or 3 bad days in a row, but then he'd have a great one. The first time he hit 20oz in a day, David and I oohed and ahhed and patted each other on the back.

We pushed applesauce for snacks as an extra source of liquid. He started to take sips of juice from a juice box. We bargained. "Take a sip and you can have another cracker. Good job!" He started to cheer for himself sometimes. He'd take a drink and say "Good Job, Wobbie!"

And then it had been a month since he'd been tubed. And I suddenly started thinking about a life without a tube. We put the IV pole & feeding pump in the basement.

The weeks went by and it became clear that he was never going to be a kid who regularly drank 20+ oz per day. He averages closer to 15-17, but he still wet, sweated, and cried. Something else was happening, too. He was gaining weight. He put on more than 2 pounds by himself! He hadn't gained 2 pounds in a year even with the tube. And now he'd done by himself in six weeks.

Then around 2 months without the tube, he got sick. He stopped eating and barely drank. I panicked. My friends reassured me that their healthy kids often did the same when they get sick. He'll get through it.

We saw the doctor- a double ear infection. When the doctor prescribed antibiotics that always upset his stomach, I felt sick myself. I was nearly in tears in the office- what if I have to tube him for hydration? She said "it's better than an IV." She clearly didn't "get it." But it turned out Robbie did. He drank just enough to get by. And as his health improved, so did his eating. He lost nearly 3 pounds in the 2 weeks of being sick and medicated, but a week later, he'd regained a pound of that. And the rest came back slowly over the next few weeks.


On Thursday, Robbie had his regular quarterly GI appointment. It had been a full 3 months since he'd been tubed. When the NP came in and asked how things had been going, I lead with that fact. She smiled and nodded. In telling her how things had gone, I mentioned my friend Becky and her son Evan, adding that Evan had his tube pulled a year ago. Before I could even finish my thought she asked, "Want me to take it out?"



I was stunned silent. I had planned to ask how long it had to be, but I expected it to be later. I asked if she was serious. She said, "Yes. He's gained nearly 3 pounds. He's doing great. It's only up from here." I started to cry. She left to get a syringe while I cursed myself for having not brought the camera.

I used the last breath of battery charge on my cell phone to take one last tubed-Robbie photo. Five minutes later, it was done. She put a layer of Tegaderm over the wound. Robbie complained about the "sticker" on his belly, but when we told him to leave it on, he accepted it and went back to pushing the doctor's rolling stool around. He was completely unaware of the momentous nature of what had just happened.

To further surprise me, she also discharged us from GI entirely. He still needs Nexium & Miralax, but as long as our pediatrician will write for them (she will) we "don't need" a GI doctor. Yet again, I was near tears. Robbie now only has one specialist- an ENT. How very.... typical of us.

As we checked out, we showed off Robbie's newly flat belly and said our good-byes. I'm pretty sure I floated to the car. I called David on the way and was struck by how nervous he sounded. I didn't feel nervous at all. If you'd have asked me a month ago how I would feel the day we pulled his tube, I would have said "excited and nervous." But really, all I felt was joy. I know we can do this. I know HE can do this.






The joy that I felt that afternoon has been carrying me through the sad memories of three years ago. The journey has not been easy, and has left scars both physical and emotional- but we have been rewarded with victories that continue to defy preeclampsia and prematurity.

Three years ago today was a very bad day. But today is a very, very good one.


--Trish

Tuesday, May 24, 2011

10w5d Milestone

I tried to use the Doppler tonight- no luck. There were some brief seconds I thought it was getting something on the screen but couldn't focus on it or hear it at all. I didn't freak out or anything. I would have obviously preferred to hear it, but it's early, I know that.

And about 20 minutes after that, I hit a milestone- first barf of this pregnancy. I've definitely been gagging my head off for weeks, and there was a day in the car I really thought it was going to happen, but so far it hadn't. I'd even gotten to the point where I'd stopped running to the bathroom because as much as I gagged, I just didn't puke.

But tonight it hit me and I thought "um, that feels like it's really coming" so fortunately I decided to play it safe and go stare at the toilet water for a few minutes. Good thing I did. And man, I really did feel better afterward. Honestly, I don't think I've felt this un-nauseated in weeks. Puking is no fun, but it was a bit of a relief.

My NT scan is next Thursday, so we should get a very long, very good look at the baby then. I'm really hoping to hear the baby on the Doppler before then, but even if I can't, that's not a REALLY long time, so hopefully I can hold it together until then.

--Trish

Tuesday, May 17, 2011

First OB check

Had my first "OB" check today. It was actually the NP since my OB is on maternity leave herself.
The NP kept apologizing for asking so many questions. My chart is literally about 2.5" thick so there's no way she could get an idea of everything from that. It was no big deal, really. Of course, I totally blanked when she asked me about surgeries. I completely left out my two D&Cs (I had mentioned the miscarriages, just not the D&Cs) and the hysteroscopy. Um, those should have been the first things I mentioned. Fortunately she mentioned the D&Cs and my brain started working again.

I sort of chuckled after we got through the list and said "my lady bits have been very thoroughly probed." She just laughed and agreed "yes, they have."

Ordered the triple screen & an NT scan at the peri center. Wrote the order to send me for co management with the MFM. Added a pre-e work up as a baseline (24 hour jug-peeing, here I come!) and asked how I was doing.

We discussed physical feeling (quite good, really) and emotional (anxious, but at a manageable level.) And then she tried to send me on my way. She thought it was too early to try a Doppler and was afraid my insurance wouldn't pay for an u/s. I offered to pay for it out of pocket. No way I was leaving there without proof of life. Plus I hadn't taken my pants off yet. We couldn't be done.

I got to see my little bean wiggling around! It still looks like a large headed gummy bear, but was wiggling all around. Measured 9 weeks 3 days (I'm actually 9w5d, close enough.) with a heart rate of 176.  Relief!

Now I just wait for the peri center to call and set up my appointments with them and get all my labs pulled. Hoping to do that Monday so I can do all my jug-peeing at home on Sunday. I am not "out" at work and do not want to have to explain my giant jug of pee to anyone. Plus it's just gross.

It's still amazing to me that things are going as well as they are. My mother-in-law asks every time we talk "Are you bleeding?" so I guess it's a surprise to her, too. (She really has a way with words, right?)

I had decided I was really just a crappy pregnant girl, but who knows- maybe I was wrong.

Trish

Thursday, May 12, 2011

Fickle

A friend on my preemie board today commented that time is so fickle. Boy, did she nail how I'm feeling these days. I feel like I'm simultaneously wanting to press pause & fast-forward on the remote control of my life.

These beginning weeks of pregnancy are interminable. I've reached 9 weeks with no signs of trouble. There was last week's "perfect" ultrasound, and the fact that I've hit 9 weeks without bleeding. My blood pressure is good, my weight has been steady even though I'm eating carbs like crazy. (I still have yet to puke, but I do get waves of nausea that only seem to respond to crackers.) I've had some cramps, a lot of round ligament pain- basically to tell me something is going on in there. I have no reason to believe anything is wrong except my own history. Which I'm trying to leave behind.

But at least 15 times a day, I think "I hope you're okay in there, little guy." because I just don't know. I will glad to get to the point that a Doppler is somewhat reliable. It was the only thing that kept me close to sane with Robbie. While I'm not nearly an anxious this time as I was with Robbie, a daily assurance of life would be really appreciated.

So of course, I'm wishing away the first trimester. Fast forward, please! Come on week 13! You can't get here quick enough! Funny to think that was the half way point for my pregnancy with Robbie. If I'd only known, eh?

At the same time, I know this is it for us. Assuming this baby makes it to birth, we're done with baby-making. I would love to have more children, but my daydreams are of adopting a sibling group out of foster care. That will likely never happen either as David isn't on board with that plan, but even if he were, I know any more children that came to us would be born of someone else's womb- not mine. And really, I'm at peace with that 99% of the time.

We're two infertiles who have managed 4 pregnancies and might actually manage 2 children. Both Robbie and I nearly lost our lives getting him here. It remains to be seen what this pregnancy will bring. But even if this pregnancy is perfect all the way to a scheduled C-Section at 37 weeks, this is it. I'm going to be 35 this year. And if we get lucky with this pregnancy, I'm going to take that luck and run. I feel done. 

Of course, there is also an element of a "do-over." This was hard for me to rectify in my mind before we decided to have another baby. I had to really be honest with myself about why I wanted to get pregnant again. Did I want another baby? Did I want to birth another baby? Or did I just want to experience a whole pregnancy? Ultimately I admitted there is 10% of me that just wants to have a whole pregnancy. It's not something that eats at me a lot, but it's there. I find it really seeping in when I'm around friends in their third trimester. I have to bite back incessant questions about what it's like. I have to fight the urge to be THAT person, who wants to rub a belly and feel the baby kick. I'm enthralled. To me, it's like being within reaching distance of fame. I wonder what it really feels like.

The other 90% was genuinely wanting another child and this was what we determined to be the best choice for us to attempt that. So here we are. But this is it. I don't want to take it for granted, or wish it away. I want to experience all of it, to really take it all in, to appreciate and treasure it. While right now my boobs hurt enough to make me cry, and I can gag if I just think about the word "gag" for a second, in a year, this will all be a fond memory. I want to commit those memories in my mind. So I need to pause time.

I also know that these are likely our last months with Robbie as an only child. As much as I want so much for him to have a sibling, I also love having just him, too. Since I've been working 2nd shift, we've got a morning routine that involves getting Robbie up and coming back to the big bed together. Robbie says "snuggle on the pillow!" and we go snuggle up together for a while. He smashes his face into mine and demands first kisses, and then tickles. The boy loves to be tickled like no kid I've seen.

Usually at some point the kitties wander in and Robbie moves his affections to them. "Fuffy kitty" is particularly tolerant of Robbie's hugs. She'll sometimes meow a short cry that sounds a little like "help!" if he's using her as a pillow, but once he's cautioned (again) not to lay on the kitties, he goes back to gentle petting and coos at her "aw kitty.." Sometimes she comes to lay on the pillow between our heads, alternating between washing each of our heads. It's a nice way to wake up.

The last few weeks I try to picture another baby with us. How will Robbie take to having to share his morning snuggles with a baby? Will he want to lay on his tiny sibling, too? What if the new baby is an early riser who wants to be up and at 'em immediately? I know in my mind that we will all adjust, but I also treasure these remaining times of just us. Someone please hit pause for a minute.


Of course, that's not life. In reality time always seems paused & fast-forwarded at the same time. The days creep by but the months fly. I feel like I've been pregnant for a year, but Robbie was just born last week. Instead I'm only two months into what will hopefully be a solid 8.5 and Robbie will be three in a few short weeks. It's always the worrisome things that go so slowly and the cherished moments which seems to disappear in a flash. My friend was right- time is fickle, indeed.

--Trish

Wednesday, May 4, 2011

Lucky

Perfect.
Not a word I'm used to hearing when it comes to my pregnancies, but I heard it today.

I was nervous as hell going in. It was the u/s tech that isn't my favorite. She dilly dallies taking measurements for far too long before showing me proof of life. Fortunately as she was zooming around looking at my ovaries, I saw a faint flicker that I knew was a heartbeat. I felt the knots in my stomach ease.

It was quick. She said "It's bigger. Much bigger." She took some measurements, then zoomed in on the heartbeat. In the end, the baby measured 7.8w with a heartrate of 156. I'm 7.7w pregnant, so that's pretty darned good.

We went off to see Dr. K. We chatted and went over when I can stop the metformin & the prometrium (13w and 10w, respectively) and that was pretty much it. On the way out the door she commented that this seemed like a quick visit. I said it was. I wish all her patients could be so lucky. And I meant it. I feel a fair amount of survivor's guilt that one round of Clomid/IUI and a few weeks later, I'm off to be my OB with a pregnancy deemed viable. I've watched so many people struggle through so much more.I got lucky. That's new to me. I promise I don't take it for granted.

David and I parted in the parking lot, but of us smiling. I will call my OB & Dr. Bitchy tomorrow to set up appointments. I haven't outed myself at work yet, but I do feel like we are now looking towards that. And we can start worrying about things like preeclampsia instead of imminent miscarriage. Lucky me.

--Trish

Tuesday, May 3, 2011

7w5d

Due to scheduling conflict of Dr. K's, my ultrasound got moved up to tomorrow. Fortunately David was able to work around some meetings to get away  to join me. My symptoms have definitely waned the last few days, so my anxiety level has sky-rocketed. For the first time this pregnancy I feel a truly intense sense of foreboding.

I keep trying to focus on a good outcome from tomorrows appointment- seeing a heartbeat, David holds my hand, we both cry. I hug Dr. K good-bye. I go home and call my OB and make my first appointment.

But I keep getting lost in the memory of the quiet ultrasound- the u/s tech desperately hoping to find an angle in which the heart really is beating. The look of resignation from David. The sympathetic eyes from Dr. K. Going home to cry and eat ice cream in bed.

I know that no matter what happens, we will get through it. We have survived the silent ultrasound before. And honestly, if things go well, it leads to even scarier times. The fact of the matter is that pregnancy for us will never be simple. It will  never be easy or without stress or worry.

Tomorrow will tell is which kind of stress we deal with next. The grief of another loss or the worry of a pregnancy.


--Trish