Friday, May 31, 2013

Birth Story and Day 1 in the NICU

First picture, being pulled out of the incision
I got transferred by ambulance from University of Colorado Hospital to Children's Hospital Colorado next door at about 11a on Wednesday, May 29. I had been a patient at UCH since about 2am on Monday, May 27 when my water broke. The ambulance over was a bit of overkill but it was necessary for liability purposes. The Maternal Fetal Care Center at Children's was closed this week, which means that everybody had to bend over backwards to accommodate this delivery. An entire team had to be assembled and we were the only family in the whole huge ward. Apparently, the lack of staffing made it extremely difficult for any of the many waiting family members to get in and out of our waiting area, which was directly adjacent to the pre/post op space. Everything was prepped and perfectly prepared so the surgery started almost exactly at one. Everybody was really wonderful and supportive and the doctors even gave Q a little bit of an anatomy lesson as they worked through the layers to get to the baby girl. I think it's very cool that Q thought it was interesting and didn't feel like losing his lunch. After seeing the pushing and pulling required for a c-section, he was extremely sympathetic to how sore I would be the next day. At 1:18p, Clarity Elise Hartman was born at 35 weeks, 4 days gestation. Quentin took the picture of her coming out and then quickly followed her and her team to the next room so he could watch and get pictures while I got sewn up. They got her all cleaned up, intubated her, and placed all her lines. When she was stable enough for the move to the NICU, they brought the bassinet up next to my bedside for a quick look before whisking her away.

After being wheeled back to the recovery area, I was able to spend about an hour regrouping as we waited for the spinal to wear off. I was feeling pretty good until we got moving onto the transport back to UCH. On the transport, as the anesthetic was wearing off, I wasn't in pain but started feeling extremely tired and disoriented. The rest of the afternoon and evening for me are quite a bit of a blur. I felt sleepy and hot and clammy. Apparently, even though I felt hot, my body temperature was low and refused to come up. Thankfully, Mom was able to stay with me while Quentin stayed at Children's, in a sleep room just a few steps from Clarity if he was needed. I finally got a few hours of uninterrupted sleep after midnight and something about that reset me. I woke up feeling like a fever had broken and all my vitals were back to normal. 

Later that evening, we were able to find out that she weighed 4 pounds, 11 oz. at birth and is 16.25" long. I think that the pictures can't really give the scale for how tiny that is.
NICU Set up

They spent today, May 30, slowly adjusting settings to accommodate what she "likes" and keep her numbers steady. In the picture above, she's lying on the table at the center. Her ventilator is sitting in the left foreground (with Mom standing behind it where she can look at Clarity's face). The bank of boxes with green glowing screens on the right are her medicine pumps. They deliver things like an IV but with an extremely high amount of precision. They also deliver the drugs in a very steady, slight amount by verrrrry slowly emptying a syringe rather than in "drips".

I was able to get over to Children's in a wheelchair today to see her. The trip was a bit much and I came back exhausted but it was very much worth it. We even got to give her "oral care". They place a little colustrum on a cotton swab and we gently rub it onto the surfaces on the inside of her mouth. It is absorbed there and allows her to get some of the immunity boosting benefits of that liquid gold even though she can't take oral nutrition right now. It's intimidating putting anything into such a tiny little mouth around all of the tubes.

My mom and Q's parents made it over to visit her today. Q's sister watched Wil for most of the day so Mom could take care of me but then I got to see Willow for about an hour in the late afternoon when Mom brought her to the hospital. Luckily, she's totally comfortable with all of the family who has been watching her but it makes me sad that I haven't been able to give her much time and attention this week. Unfortunately, there's something about the surroundings that is making her a little unsure about me right now. She won't snuggle on the hospital bed with me and I'm not physically able to get in very many positions down at her level to play. I also can't really hold her. Once again, I'm so grateful to have so many family members who she knows and trusts. They have come together as an amazing support team over the four days we've been at the hospital. Among both sets of our parents and siblings, they have managed to keep the cats fed and new seedling garden watered at our house as well as providing a stable network for Willow.

Hopefully, I can visit Clarity again tomorrow but I'm not going to push to have them discharge me just yet. Even though I'm feeling great, I don't want to overdo it and end up unwell and miserable. Even today, everyone couldn't believe how well I was doing less than 24 hours after a c-section. Patience is not something I do well but I hope I'm able to admit when it is something I need to reconcile myself to. There's not a lot to do for her over there right now anyway. I sang and talked to her and stroked her head and arm but she just needs to stay sedated and sleeping to get big and strong.

I didn't get it posted here, but we've also got a picture of her without her cap. She's got so much hair! I also think she has Quentin's nose.

We're still in the "honeymoon" period and I'm trying not to get too optimistic but we just need to keep hanging on to this trajectory and she'll pull through. We all know that the rollercoaster ride is just beginning though.

Wednesday, May 29, 2013

Dear Clarity,

 You,  my  dear  daughter,  are  spending your last  night cradled within me.  Shortly after 1p today  Clarity  Elise  Hartman  will  make her entrance into the  world and you will  have to start the fight for your life. Since your water broke early  Monday  morning (1a!)  at 35w2d,  we've been in the hospital.  Antibiotics every 6  hours have kept you infection free and  labor blessedly didn't come on  as we waited through  getting you two steroid shots, 24  hours  apart.  Your doctors are amazing and  one, Dr.  Reeves,  worked all day  managing to cobble together a  team  of  about 40 (!)  people needed to deliver you by  caesarean section at Children's  Hospital  Colorado, 2 1/2 weeks before your scheduled arrival.

Tomorrow afternoon, I  have to come back to the other hospital to recover but Daddy is going to stay by your side every moment that he can.  I  told him how I've been  singing  Twinkle  Twinkle  Little  Star to you.  He's bringing a  cloth that I've kept resting by my heart all  afternoon so my scent can maybe linger  near you.  He  loves you dearly  and  you're lucky to be the daughter of a  wonderful man.

Not far away,  waiting  outside the  NICU,  your  grandparents,  aunts,  uncle,  cousins,  and  big  sister  Willow are  going to be praying for your safety.  I  hope you get to know your sister.  She loves  babies and although she's too young to understand that you're on the way,  she will smother you with love and attention from the moment she sees you.  My   big-hearted,  enthusiastic  girls can grow up having grand adventures together and being the best  of  friends.

Father afield,  your family and friends and complete strangers who only know about you because of your CDH  are praying for you across the country and around the world.

Your  Grandma  Sue  is coming back to the hospital with me and we're going to sew  the binding  on to the quilt I  made for you.  Daddy has promised to send pictures and updates when he can.

This afternoon, I spent several hours on the monitor just because I  wanted to  hear you and now,  in the middle of the night,  I'm  back  on.  Your heart  rate is strong and  gets faster when you move around  or when you get excited by one of my contractions.  The nurses always comment, " Your baby looks  great!"  They let us keep the strip from the monitor this afternoon and  Daddy  recorded a  sound file onto each of our phones  of your heartbeat.

 I  know you're facing more challenges than we thought.  You're so early  that they think you only weigh about 5  pounds.  You're latest MRI  showed more bowel has ascended into your chest than we had thought which means they didn't see  nearly as much  lung  volume as  we'd been  counting  on. Everybody's very worried.

I  also know  that you were constantly  practicing breath movements at your last scan.  You somehow figured out how to regulate your amniotic fluid after almost having too much,  suggesting you've figured out ways to swallow adequately, a  good  sign for your intestines.  Your liver is still  down in your abdomen, which is something that always makes the doctors more optimistic.  We  know your heartbeat is strong and  regular.  You don't have fluid built up anywhere in your body where it shouldn't be and besides the pesky problems caused by the missing piece of your diaphragm,  everything else about your anatomy is just as it should be. I  think you look like your sister in your 3D  ultrasound pictures.

Although you're measuring in the 12th  percentile for growth,  that number may be low because your abdomen is so empty.  You're  head is in  the 90th  percentile.  Your sister was in the 25th  percentile  for  weight  and 98th  percentile for head circumference so I'm  trying to hold the picture that you're perfectly on track for the size of babies in our family.  By the way,  always keep in mind that you got your huge head from  Daddy and  diminutive stature from  Mommy.  I'm betting you're another perfect  half and half blend of your parents.  Hopefully you've gotten the best  parts,  although  I'm hoping you got my stubborn  tenacity.  Inheriting Daddy's calm, dogged  patience for hard tasks would also serve you in what lies ahead.

I know that in the grand scheme of things you chose us and we chose you because we needed each other  for whatever our destinies on  earth  are  right now.  We've promised that were going to do our best to do right by you and try to make choices in your best interest,  unbiased by what we may want  Thank you for entrusting yourself to us.

 We love you so much already and can't wait to meet you tomorrow.  We're anxious to spend as much time as we can with you,  hopefully the rest of our lives.  Be strong,  my  sweet  girl,  and  fight, fight, fight.  The world's a beautiful magical place that will be brightened even more by what you bring to it.