Time Flies

I can't believe my daughter is almost 6 months old already. It is amazing how quickly time has flown by. In those first early weeks, I remember cringing when people said she would start to sleep better after a couple of months. A couple of months? Each day and night seemed to last an eternity, especially those long nights of winter. I would dread the darkness, knowing that I would not sleep, and feeling like I was the only person on earth who was awake.

But, the days and nights all melted together and now that I look back they seem to have flown by. V sleeps through the night like a champ now. I only nurse her three times a day and feed her formula/cereal the other three feedings. Now that those late night feedings have gone to the wayside, I realize now how much I miss them. It was our time together, and I loved looking down at her as she scrunched her nose up against me and held my finger with her tiny hand as she ate.

She has been well all winter, thank God. No colds, no sniffles, no runny noses or coughs. I try to maintain a certain sense of normalcy, and not to treat her too much like "the girl in the plastic bubble". Granted, I don't let her roll around with other kids yet, but I take her everywhere: to the grocery store, to the mall, out in the stroller. She LOVES the stroller.

We went to an outdoor St Patrick's Day festival this past weekend. There was green beer and a band for the grownups and jumpy castles and face painting for the kids. When we ran into the couple and their two boys from across the street, the boys both wanted to reach in and touch V's hands. I don't know why all kids seem to want to do that...It must be some sort of weird instinct. Thankfully, their mother (who is a nurse) told them not to touch her as they both had dirty hands. So, they just leaned over her as she sat in the car seat, which was fine, until, to my horror, the younger one proceeded to drool onto her blanket! I'm already learning: No matter how much I try to protect her, she's going to be exposed to this kind of stuff. They just don't make enough Purell to protect her from it all.

Sticking my toe back in the water...

I wasn't sure I wanted to come back here. Originally, I used this blog as a way to sort out my feelings about infertility. I thought that maybe if I typed out my fears about going through in vitro that they would seem less...powerful. That somehow those fears would lose their strength if I said them out loud, like therapy.

In many ways, this blog was better than therapy. The support I got here was amazing and helpful. I always felt heard and understood when I read all the comments. I'd much rather talk to people that "get it" because they've been down the same road that I've been down. How could some random therapist that has 2 or 3 kids at home have possibly related to me when I was so terribly afraid that I would never have any children? Not only would I have been out $100 a session, I would have rolled my eyes the whole time at anything that person had to say.

So I blogged. And it helped. And not only that, now I have a written account of my entire pregnancy, which is pretty cool. I loved being pregnant, not only because I was one of those lucky bitches that never got sick, but because I knew it would probably be the only time I would ever experience it. At least I can say this for infertility: I never took being pregnant for granted.

But now I'm in this weird state of limbo. My baby is here, and she looks so healthy and perfect. But she isn't healthy. And the edges around her diagnosis are still so very sharp. I didn't want to come back here because I didn't want a written account of what we went through those first few weeks and months. It was horrible. I hope someday I will forget those moments when we first found out, but I know in my heart that I never will.

When they told us that she has Cystic Fibrosis, they tried to put a positive spin on it: "The median lifespan of a person with CF is 36!" they said, like this was some sort of fucked up good news. That means that half of the people with CF live that long. The other half don't. So, while I was nursing her at night, I'd find myself trying to figure out how old I would be if she made it that far. "If she dies when she's 36, I'll be 68. If she dies when she's 27, I'll be 59", etc.

I wonder what her life will be like. Will she ever get married? Have a career? Or will she just decide to say "Fuck it, I'm going to die anyway" and turn to drugs or booze or sex or anything else that could kill her instead.

Will the other kids be mean to her at school because she's the sick kid? How am I going to socialize her with other children when I'm terrified that one of them will give her a cold that could lead to pneumonia or RSV or bronchitis?

My only saving grace is that while I'm doing all this worrying, I'm also cherishing every single minute I get with her. Like my pregnancy, I'm not taking anything for granted. So, I spend a few more minutes rocking her at night than I maybe would have if she were 100% healthy. I pepper her head with kisses constantly and just enjoy the warmth of her cheek against mine as I hold her. I love her so much it makes my heart hurt. I know how lucky I am to have her.

But the fear, my god, the fear. I don't know what I'll do when she gets sick. And I say "when" and not "if" on purpose because it is an eventuality. I don't know if I'll come back here to talk about it because I don't expect anyone who used to read this blog to get it. Sick or not, at least I have a kid, right?

Beth over at Prop Your Hips Up Afterwards has had a really tough pregnancy and asked in her last post if it was all worth it. I've asked myself the same thing a million times. Did we do the right thing by going through IVF? Maybe my inability to get pregnant naturally was nature's way of saying that two CF gene carriers should never make a baby in the first place. If we had never had her, would the pain of never being a mother be worse than the pain of being a mother who's child died? Is it
really better to have loved and lost? Did we do something wrong by bringing this child into the world?

I didn't know the answers to those questions at first. But now when I look in her eyes, and she's grinning that sweet gummy smile at me, all the pangs of guilt and regret go away. And finally after months of worry and wonder, I can at least go to bed at night knowing that for us,it was worth it. Definitely.

Part 3

Enter Dr No Drugs for You...

I couldn't tell you what he looks like, because my eyes were clenched shut the whole time, but I couldn't have been more happy to "see" him. Even though I thought he was an asshole for making me stay in labor til it was time to push before I could get my epidural.

He had me assume the position on the side of the bed, which was hard to do as the baby had dropped so far down that I could barely sit. I guess her head created a lot of pressure when I sat up because as soon as I did, my water broke. Plus, I peed at the same time. At least that's what they tell me.

Water/pee went everywhere. All over me, the bed, my nurse (who actually had to change clothes afterwards) and Dr No Drugs. Funny how normally this occurence would have been mortifying to me, but at the time I could have cared less. I just wanted that needle in my back.

I actually felt the needle go in. I think normally I would have found this painful, but again I could have cared less at the time. They could have put that epidural in my eye and I think I would have been fine with it.

Now, after experiencing 4 days of contractions and 10 hours of hard labor, let me just tell you that I think the epidural is the finest medical invention known to man. In a mere ten minutes, I transformed from a sweating, grunting and extremely unfriendly woman to a perfectly pleasant person again.

Once I was settled in the bed, the nurse checked my cervix and told me I was at ten centimeters. Then she ran to get the doctor and told me not to push until she got back.

She and the doctor came in five minutes later, and told me it was time to go ahead and start pushing whenever I felt a contraction. Ironically, and mercifully, I actually couldn't feel contractions anymore. So, I totally faked it and said "Oh, I think I feel one" and would just randomly push whenever. I would have done anything to protect my precious epidural that I worked so hard for...I just didn't want them to turn it down if they knew I couldn't feel my contractions!

After about five pushes, the doctor asked me if I wanted to feel her head. I reached down and for the first time my fingers touched the soft spot on her head. It felt so warm and soft and the tears instantly sprung to my eyes. I pushed one more time and she slid right out.

There was meconium in my amniotic fluid, so they took her away to suction her out first. I didn't hear her cry right away, and I started to panic. Right as I started to try to propel myself out of the bed to get to her, she let out a cry so shrill and so beautiful...the most beautiful sound I've ever heard.

They weighed her (5lbs, 5oz) and measured her (19 inches), wrapped her up and handed her to my husband, who promptly walked to over to my bed and handed her to me. He snuggled up behind me and we both looked at this perfect, pink little thing, and to both of our amazement, she looked right back at us, first at me and then at my husband. She looked us right in the eyes, and it was like she instantly recognized us and trusted us. It was the most precious moment of my life. We both started crying and stroking her and every ounce of pain I felt during labor completely melted away.

I am so thankful that I got to experience pregnancy and childbirth. It was a long and difficult road, but the reward at the end made it all worth it. I'd do it again in a second.

Part 2

When we left for the hospital, my contractions were 4 minutes apart. I never really thought about why they call them "contractions" til then. It makes sense, because literally every muscle in my body contracted when they hit, from my belly to my back, down my thighs, and up into my eyelids. I curled into a little ball in the front seat of the car and braced myself for the 15 minute drive to the hospital.

I don't remember the drive there. But, I do remember getting out of the car once we got there. I had a huge contraction in the parking lot, and I had to lean on my husband in order to stand. Once it passed, we went inside to check in.

"Look who's back! You must have eaten some spicy food if you are back here in less than 48 hours!" the desk nurse exclaimed. I smiled, then braced myself against her desk as the next contraction hit.

Thankfully, they saw that this time was for real and they immediately sent me to triage and told me they would get me checked in while they were monitoring me.

One of the nurses walked my husband and I back to the same room I had been in Friday night. This time, when they checked with the litmus paper for amniotic fluid, it turned blue quickly. Also, she said I was 4 cm dialated and 100% effaced. She had me put on a hospital gown and then she helped me to the door to take me to my room.

As we were walking down the hall, I noticed a large group of people coming towards me. I somehow remembered that this particular maternity ward conducts tours for expecting parents on Sunday evenings. Well, these poor people certainly got an eyeful of what they could expect, because as soon as they passed, I crouched down as another contraction hit and I promptly passed what remained of my mucous plug, plus a nice gush of amniotic fluid, all over the floor. Hehehe...

When we got to the room, I told my nurse (who was SO amazingly wonderful throughout the whole process) to tell my attending physician that I was ready for my epidural. Stat. While she went to get him, my husband mercifully massaged my lower back with each contraction. They were now about 2 minutes apart.

The doctor came in and he had that "You are not going to like what I have to tell you" face on.

"I just talked to the anesthesiologist and he said that you can't have an epidural. He thinks that since you have taken heparin injections that you are at high risk for complications from it".

Dammit. I had only discussed this with both my RE and OBGYN a million times during my pregnancy. They both said that as long as 12 hours had passed before the epidural was administered then I would be fine. But apparently Dr. No Drugs For You disagreed.

Fuck. This was not good...


I started to panic. And beg.

"Please, go back and talk to him again. Tell him that I discussed this with my doctors and that it's been 14 hours. No wait, tell him I didn't do my shot this morning and that it's been 24 hours. Please! Just get him in here!"

The whole time I was begging, my eyes were shut and I was rocking back and forth on my hands and knees on my hospital bed. The contractions were now constant, and no amount of breathing, rubbing, massaging or focusing could make them easier to deal with.

Because of my apparent lack of pain tolerance at that point, I must have made my physician feel badly for me, and somehow he managed to talk Dr No Drugs into helping me out.

Mercifully, I got my epidural at 12:30 am, right after the nurse told me I was 9 cm dialated.



**Baby is crying and needs to be fed...More to come.

The birth story...part 1

We had our baby.

She is so beautiful that I could stare at her all day. I'm amazed at how perfect she seems. You would never know from looking at her that she has Cystic Fibrosis.

So it seems I have a lot of catching up to do here. I'll type as much as I can, but I'm going to have to break the whole story down into parts. Let's start at the beginning:

On Wednesday, September 27th, I woke up feeling "different". I had period-esque cramps. My lower back hurt. And I had started spotting. I had a scheduled OB appointment that day, so I just hung out at home until it was time to go to the doctor's office. I told them about my new-found symptoms, so they hooked me up to the monitors for a non-stress test. The test showed I was contracting every 5 to 8 minutes.

"But", the doctor said "this machine can't tell the difference between real contractions and Braxton Hicks. So, you could have this baby tonight or two weeks from now.

The cramps and back pain were uncomfortable, but certainly nothing to fret about. In fact, I was excited that things were starting to happen. I just went home and went about my business.

By Friday, the pain was worse, more intense. The spotting had turned from brown smudges to pinkish red mixed with an egg-whitey clear substance. It felt like I was "leaking" and I started to freak out that my amniotic fluid was slowly trickling out. So, I called my mom for a little reassurance.

"You should go to the hospital" she said. "So and so's daughter leaked out all her amniotic fluid and didn't go to the hospital and her baby died as a result".

Gee, thanks for telling me that, mom.

So, my freakout level elevated itself to full blown by the time my husband came home from work. I called the doctor on call, who promptly said "We have no way of knowing if you are in labor or not, so I guess you should come in to get checked out". His tone was condescending, which pissed me off. By 9pm, we were on our way to labor and delivery.

They hooked me up to the non-stress test monitors again. Still contracting every 5 minutes. 1 cemtimeter dialated and 75% effaced. They tested whatever was leaking out of me with a piece of litmus paper. If it turns green, it's amniotic fluid. If it stays blue, it's probably just discharge or your mucous plug. Mine was blue. They sent me home. I felt sort of like an asshole for causing such a panic. But, I guess it is better to be safe than sorry.

Later that night, I passed my mucous plug. It was way bigger than I anticipated it to be. Very bloody and gross. And it came out in sections, not all at one time. Just an FYI for those of you who don't know what to expect.

As the weekend continued, I found that I could not sit down very easily. My lower back hurt so badly that it was impossible to sit on any soft surface like my bed or the couch. I spent the day Saturday walking, trying to get labor started. I soaked in the tub for a long time. I used the hell out of my heating pad and those Thermal Care heat wrap things. My lower back has never hurt like that.

By Sunday morning, October 1, I could not sit anywhere but on the floor. My husband left to go to the Panther's game (with my blessing) as I thought it would still be a while before anything would really happen. He left at 10am. By 11:30 am, I called him and told him to come home.

It was time. Contractions were occuring every 5 minutes, and they were so intense that the only way for me to get through them was to get on all fours and rock back and forth, breathing through them. Plus, I was sure that I was leaking fluid at this point.

In between contractions, I took a shower and finished packing my bag. We watched the rest of the game and then called the doctor on call. Guess who it was? The same asshole who was on call the Friday night that they sent me home.

He asked me how intense the contractions were. I told him how intense they were and he replied "well, everyone's pain threshold is different. These still may be braxton hicks. But, go ahead and come in again and we'll check you out."

Whatever, dickhead. I'd like to see how high your tolerance for pain is.

I put my annoyance with him aside, walked into the kitchen and then said the obligatory "Honey, it's time" to my husband.

We grabbed our bags and left for the hospital on Sunday evening around 6pm.

If It Walks Like A Duck...

My muff hurts.

I don’t know how else to say it. Okay, I do know how to say it, it’s just that I can’t ever remember what the condition is called.

Plus, I think the word “muff” is kind of funny.

Dr Google calls it symphysis pubis dysfunction, a condition where my pelvic bones have separated in the front due to an increase in relaxin and progesterone. This is usually a normal occurrence, but in my case, they bones are so separated that they move more than they should, causing pain in my pelvic area.

Especially when I walk. Or stand on one leg. Or get in and out of a car. Or in and out of a chair. Or walk up and down stairs. Or roll over in bed. Basically, it hurts whenever I move my legs. The pain radiates from the frontal muffin area around to where my sciatic nerve is and up into my lower back.

So I told my doctor about it and you know what she told me to do to make it all better? Keep my legs closed. (My husband actually stifled a laugh when she said it.)

Apparently, my pelvic bones can’t move around as much when my knees are together. I’m pretty sure that will be hard to do when my due date gets here, but I guess I’ll just hope that the epidural hides the pain til after delivery. In the meantime, I’ve found that a heating pad/warm bath combo can work wonders for this condition.

The most ridiculous side effect of all of this though?

I waddle.

And not just in a “She’s 36 weeks pregnant” kind of way either. We’re talking about some serious duck-walk action. My ass sticks out, my hair swings from side to side and I get lapped by the elderly when I’m out in public. Humiliating really, but it can’t be helped.

Hubs says I should be happy that I only have 27 more days left to deal with this. But in reality, a piece of me is not ready for this pregnancy to end.

It may sound strange, but I’m going to miss her not moving around in my belly anymore, and not having her all to myself. I still can’t let go of the idea that this may be the only pregnancy I ever have, so I’m holding on to it with everything I’ve got.

I’m in no hurry to deliver, and if I have to waddle around for the next month, then fine by me.

And besides, how often do you get to actually use the word “muff” in polite conversation? Not often, I’m sure. So, I’ll be sure to take advantage of this time while I have it.

Silver Lining?

Yesterday I had my follow up ultrasound at the fancy shmancy women’s institute, the same place I went to two months ago to talk to the genetic counselor and to get my amnio. Since I opted out of the amnio, they told me they could look for “markers” on the ultrasound for Cystic Fibrosis. These markers include any obstruction or calcifications in the bowel or intestines, specifically a condition called meconium peritonitis. On ultrasound, these blockages show up as big bright spots, which they call “brightening of the bowel”. According to Dr. Google, about 80% of fetuses that are affected by CF will show this marker.

Since both my husband and I are carriers of the Delta F 508 gene, (which of course happens to be the mutation that is associated with the more aggressive forms of the disease) we were eager to get any info we could, even if it is just a “marker” for the disease. Anything to help ease my mind.

I slept like shit on Monday night. I was up til one thirty, and then woke up about every hour after that until morning. I sure as hell didn’t have any problems with obstructions in my bowel, that’s for sure.

Our appointment wasn't until 1:15, so I had to sweat things out at work all morning. My husband had some appointments with clients, so he arranged to meet me there after lunch.

I got there at about 1:05, and was still sitting there at 1:45. Why is it that when you are waiting for some potentially life changing appointment at the doctor’s office, it always takes forever for them to call your name? The fact that my husband was running late did not help the situation. I don’t know how the hell I didn’t just jump right out of my skin while I was sitting in there. My saving grace was that an episode of “Cops” was showing on the waiting room television. Nothing like a guy in a wife beater t-shirt trying to evade the police to get your mind off of things.

Thankfully, my husband showed up right as they called my name to go back to the ultrasound room. He held my hand as the ultrasound technician lubed up my belly and went straight to my little girl’s intestinal area.

It was pitch black. No bright spots.

“She looks great” she said and then proceeded to check out her abdomen, her heart, and her vagina (just to make sure that she still had one, which she did). Everything looked normal, they said. She weighs approximately 3 pounds and is 12 inches long.

I didn’t cry until I kissed my husband in the elevator in the parking deck. I know this new info isn’t a 100% guarantee that this baby will be okay, but it is a good sign. And at this point, I’ll take it.