March for Babies

Saturday, April 22, 2006

Expectations, Great and Otherwise

I don't know what I expected from pregnancy. I never imagined I would have the opportunity. After so many cycles ending in that stick with the single line I was absolutely dumbstruck by seeing two. Knowing it had been the result of the IUI I still looked quizzically at that double line and asked, "How did that happen?" I didn't really believe it then, or when the nurse called with the news of a positive beta, or when the nurse called with the more than doubled beta. I still wasn't really convinced when I got the quad screen or when we rolled in for the 20 week ultrasound. We could visibly see her moving all over the place on the screen but I couldn't feel her moving so it mentally and emotionally felt like I was watching someone else's home movie. What I need you to understand is how totally surreal the entire pregnancy seems to me, not just now that it is over, but the entire time! I was JUST starting to get used to the fact that I was pregnant with my growing belly and increasingly swollen feet when it ended. I did not bond with the baby in my uterus. I was barely able to accept the fact that she was there in the first place. I thought about having a little girl in the summer and the thought pleased me but mentally and emotionally I did not connect those thoughts to what was happening inside my body.
My water broke at 11:30am. Azure was born at 11:50am. In those twenty minutes we were asked repeatedly if we wanted extraordinary measures taken in order to save her life. In my shock and muddled thinking I was rendered speechless. I could not give them an answer. I had questions to ask such as: At 24 weeks and 3 days can she make it? Will she suffer? Will she suffer later due to her development outside of the womb instead of inside? Will she be in pain? I needed to have a discussion with someone explaining things to me so that I could make the best possible decision for the welfare of the baby. I still did not think of her as my daughter. She wasn't real enough yet. The thing is, there was absolutely no time for that discussion to take place.
Seeing her in the isolette in the NICU she barely looked like a real baby. How do I know this is my child? I did not experience labor and childbirth and bring forth into this world a bouncing baby girl. I had a traumatic experience with pain and fear and a voiding of something from my body (I never even pushed) and then T and I were left in a room alone and I was no longer pregnant and we didn't have a baby and I couldn't wrap my head around what the FUCK just happened.
I had specifically not had any expectations about what the labor and birth should be like because I wanted to relax and go with the flow. If I had a plan and things went another way then I might have been disappointed and I did not want to look back at what could possibly be my only birth experience with regret. What I had hoped for was to deliver her, probably with the aid of an epidural, and within the first hour after birth I wanted to do kangaroo care. That is to say, place her skin to skin on my chest and let her know where my breasts were just to get her used to the idea that food could be found in that general area. As it turned out, I wasn't able to hold her until she was three weeks old and the kangaroo care came much later at almost five weeks.
Azure had her immunizations Friday. I didn't think she would even have enough muscle tissue yet in order to get the shots but they assured me that they use a very small needle. Saturday she was "naughty" which is nurse speak for "she hasn't been breathing well and hasn't been pooping and has had more residual milk in her belly and isn't doing so hot right now". This was one of those days when I was not allowed to hold her, too much stimulation.
I look at that little girl, sleeping in her bed and I now realize she is my daughter. She has my nose and she is blonde like me. Those things however do not make her my daughter. She is my daughter because I am there for her. I care for her. I love her and I am making decisions for her. Are they in her best interest? I hope so. I assume so. The biggest decision was already made. We decided to have them save her life.
I feel that all these things have been one big selfish act on my part. I wanted a baby. I wanted to try medical assistance to get pregnant before moving on to adoption and when things came to a head I held my tongue and kept my questions to myself and was grateful that my husband told the medical staff to do what they had to do to keep the baby alive. Yes Rach, I too find it amazing that should I still be pregnant right now I would be able to make the decision (CHOICE) to either continue or discontinue my daughter's life. I wonder if she would have been better off if we had just let her go. She wouldn't be struggling to do basic things right now like digesting, breathing, keeping her heart from stopping. Simple things like the sound of my voice, the light overhead, the gentle rocking of the chair or the supposedly soothing touch of my hand can be overwhelming to her. We are her parents and we had the CHOICE to let her live or die. I can't say for sure whether we made the right decision or not but I am glad we had the right to choose one way or the other. According to Tertia's post the other day babies in South Africa born below 2.2 pounds are not given oxygen support from ventilators. Azure would have died in that situation and it would not have been our choice, the choice would have been made for us.
I sat in the nursery at home Saturday night to pump. I looked around at the bookcase filled with toys, books and videos, at the changing table covered with clothes, diapers and skin care products and at the swing which is all set up holding a teddy bear no bigger than the girl who should be sitting there instead. I looked at that empty room and I felt sad that things didn't turn out the way they were supposed to. They weren't supposed to be this way. There I was pumping my breasts which would not have been possible had I not had a baby and yet, there was no baby. I was holding plastic bottles instead of cuddling my newborn. I do not yet feel like a mother and I do not think that I will feel like a mother until I get Azure home with me and I am the one responsible for her care. I will not feel like a mother until I no longer have to ask permission to hold her (Saturday and Sunday permission was denied), to bathe her, to change her diaper or give her medicines that she needs.
I did not have any expectations about what motherhood would be like, but I never expected it to be like this.

Tuesday, April 18, 2006

Full House!

2 months old !
3 pounds !
She is working her way back up on the feedings which means the IV nutrition is being turned down.  I am looking forward to getting rid of the IV...again, as this will mean she can wear some of the preemie clothes we have been given.  (With the IV in she needs clothes that velcro around her arms since you can't just pull them through the sleeves.)
Azure is 33 weeks gestation today.  Her new neighbor in the bed next door was born Sunday night at 31 weeks.  She weighed in at 4 pounds 9.7 ounces.  It just seems incredible the difference time in the womb makes.
Gotta go, nature calls.  In this case, that means my boobs are full and letting me know it is past time to pump.  Don't sneeze or get a chill because your nipples will zing like they are hooked up to Consumer's Power! (Yeast infection seems MUCH better by the way.)

Friday, April 14, 2006

Take a Moment for a Good Cause

I have been Pro-Choice as long as I can remember. I made up my mind the first time I learned what abortion was and what the right to choose meant and I have yet to find an argument to make me change my mind.

I have held onto my Pro-Choice notions throughout our struggles to conceive and even now when I look into my daughter's eyes and think that she was supposed to have been a second trimester miscarriage who just so happened to make it out alive.

I will passionately defend a woman's right to choose with pounding fists and tears in my eyes and choking sobs because it is just that damn important to me.

I recently took an online survey for Planned Parenthood to help them determine what it is that "We" (collective Pro-Choice supporters) want and what "We" are willing to do to help them get or keep those things that we want.

You can take the survey right now at:

Please do not take your rights for granted. They are not. We need to ask for them, expect them, demand them, fight for them.

Thank you.

Tuesday, April 11, 2006

Stand Aside Please, Boobs Coming Through!

Hey, if JJ can talk about her boobs, why can't I?
So yesterday morning I noticed that all through the night before I had felt pain in the area of my left nipple. Like, disturbed my sleep kind of pain. Then it came time to pump and HOLY GEEZ-US did that hurt!
It hurt all day. Last night during my 7pm pumping T looked across the livingroom at me and said it looked as though I had grown a third nipple! I have a lump on the left side of the left nipple in the areola part. It is about the size of a pea. It HURTS when I touch it and it merely hurts when I leave it alone.
I spoke to the nurse watching Azure last night and she suggested hot compresses and Tylenol overnight (probably a clogged milk duct) and said I should talk to the lactation consultant this morning. So, I did the heat thing, and I turned down the suction on the pump to the point where it would not suck, and I had to turn it up again to get any milk out. I took a full hour to pump this morning removing the pump every now and then and massaging the spot hoping to unstick whatever was stuck in there. I never took the Tylenol.
The lump is smaller but not gone. It still hurts.
The lactation consultant was consulted. Her first reaction was, “Your nipples are HUUUUUUUGE!” I told her that I had switched the bells/shields/cones of my pump from 24mm to 27mm because the 24mm that came with the pump were pinching. “Of course!” she said, “You should be using 30mm!”
Are you kidding me? 30mm nipples people! That is HUGE! These nips will never fit into my daughter’s mouth! My boobs are four times the size of her head, how is she supposed to eat from them?
Oh yeah, the other thing. I have a yeast infection on both nipples but the left one is worse. This is probably the cause of the bit of yeast infection in Azure’s diaper area a while back. If she has been drinking my milk then digesting the food and passing it into the diaper then it starts a rash on her butt.
How did this happen if she was being tube fed? Good question. It all came from “window shopping” which is our NICU code for letting her lick and mouth on the nipples during kangaroo care. I pump beforehand so she does not actually get more than a drop of milk at a time. Basically, she gave me the yeast infection. She is at greater risk for them since she is on the oxygen. Her mouth is swabbed with Nystatin twice a day to prevent such a thing but apparently I got it and passed it on to her butt. From her mouth to my boobs to her butt. WTF?
So, now I get to call the doctor and say that I am exclusively pumping but that I have a yeast infection and would she please call something in for me.
It is time to pump again…wish me luck.!

Saturday, April 08, 2006

Thursday, April 06, 2006

Two Steps Back

"They" say time in the NICU will be one step forward two steps back. "They" don't tell you that the steps back will actually feel like you are hurtling off of a cliff at 100mph blindfolded.

We are back in the corner. We are back on CPAP exclusively. We almost went back on the ventilator. We are withholding feedings through the tube so we are back on IV nutrition. It has been a long hard couple of days.

Withholding the feedings even though they are through a tube and she never actually was sucking for nutrition has left her hungry and wanting to suck on positively everything in site. Give her a pacifier or your finger and she will go to town, she is very hungry! She gets so wrapped up in the sucking that she forgets that whole breathing thing and she stops, then her heart slows down to almost stopping. We have spent two days in the balance between "Don't over-stimulate her" and "Jiggle her and pinch her toe to get her breathing again". Terrifying.

She has been working so hard at breathing and digesting her feedings that she is just plain tuckered out. We are too.

However, we seem to have turned a corner. The X-ray tonight looked good. The echocardiogram this afternoon let us know that it is not congestive heart failure, yet. We are heading back towards the good side of life. It is very encouraging.

Slowly but surely...

Tuesday, April 04, 2006


My girlfriend in Cleveland started a walking team and is in a fundraising competition with her husband. They are even having shirts printed up with Azure's name on them.

T and I have teamed up and are hitting up friends, family and co-workers. I have already raised over 5 times my original goal amount.

My mother is walking and got members of her symphonic band to sponsor her.

This is a great cause, please consider walking or at least sponsoring a walker.

These babies need all the help they can get.

Pomp and Circumstance

Azure has moved up in the world!  Up until yesterday afternoon she was in the far back corner of the NICU where there was little light and little foot traffic.  We really liked our little niche.  However, last night we scrubbed up and headed towards the back corner and saw an empty bed!  Wha?  Azure had been moved up by the "big" girls (twice her size) near the nurse's desk where there is noise and light and it is now crowded with three babies and their families all smooshed together in a small area.  However, this is a good thing.  This means she is no longer so sick and small that she needs the back corner and it is available for any new babies that might actually need it.  Yay! 
She is back in an isolette to provide a bit of muffling for the noise and the isolette is covered to dim the bright lights a bit, but this is a big step up.  Our goal so far has been to get her to "Feeder and Grower" status and we are well on our way.  We believe her new neighbor will be going home sometime this week (YOU GO GIRL!) which will give us a bit more breathing room. 
Azure was a bit agitated on Sunday but produced quite the diaper around 6pm and has been back to her old self since.  Ahh.
Your good thoughts and positive vibes are working! Keep 'em comin'!