Sunday, June 30, 2013

Mallory's Way

Since the day we found out our baby girl was with out a doubt going to be born with abnormalities, our lives have been a whirlwind of nothing but crazy.  Instead of that joy parents feel when the due date draws nearer, we felt fear.  We felt worry.  We felt out of control.

I think we did what everyone does when they get new information they don't know what to do with, we hit up Google.  We were told it was likely our sweetheart was going to born with Apert Syndrome. After looking it up, our fear sky rocketed.  What was she going to look like?  What abnormalities would she have?  Would she need surgery right after birth?  Would she have a normal life?  Would she have a long life?  Question after question went through my brain, none of which actually had any answers pertaining to my baby.

We went through tests and a doctor switch.  We got put in contact with all types of different people to prepare us for what was to come.  There were days we were told that they were leaning away from Apert syndrome and then days when they were back to that potential diagnosis.  There were days that were so frustrating that I was in tears for what felt like hours.  And I would resort back to the thought, "Why her?  Why my baby girl?  My only girl?  Why did this happen to her?".  I guess I still don't really have an answer for that question but I'll do whatever I can to make sure I find out.

I guess we were fortunate to discover her abnormalities prior to her birth because it gave us the opportunity to do some of the grieving ahead of time.  By the time she was actually born we were in a place where we had a good understanding of the potential outcomes and that there was nothing we could do to make this any different.  The reality was hard, but it is reality.  There's no wave of a magic wand that can take any of this away from her.  So we decided that it would be ok.  No matter what.  We will accept it and teach her to do the same.  We will make her life as awesome as we possibly can and I will still do all of the girly things I always wanted to do when I imagined having a daughter someday.


Mallory Christine was born on June 20th.  She was born at 35 weeks, 5 days, what they consider a late preterm baby.  In my past pregnancies, I always feel done with being pregnant at this point but always managed to make it a couple more weeks before actually going into labor.  I didn't plan on her coming early but she had a different idea.  I went in for my weekly prenatal visit, which consisted of a level 2 ultrasound, a non stress test and an office visit.  This particular day, I was also scheduled to meet with the hospital's neonatologist to get an understanding of what to expect at delivery.  My fluid levels were high again and during the non stress test I was having a few contractions.  When it came time for my regular office visit I was having a few regular contractions but nothing that really concerned me.  Braxton Hicks contractions were very normal for me.  The nurse left me in the room by myself for a good 20-30 minutes (gotta love making an appointment to wait forever for the doctor!).  When the doctor finally came in she asked me how I was feeling.  I told her I was having a few contractions and shrugged it off.  She asked me how many I'd had.  I said I'd had probably 5 or 6 in the 30 minutes I had been in the room.   Both the doctor and the nurse looked at each other and said, "that's a lot".  

With that, I was immediately shipped down to labor and delivery to monitor my contractions and make sure I wasn't actually in labor.  I called my husband and he immediately made the hour drive down to the hospital.  After probably 7 hours or so in labor and delivery, I had dilated to 6 cm.  It was enough to keep me in the hospital but my labor had come to a standstill.  We spent the night there with still no change by morning.  At that point, they made the decision to induce the labor.  Mallory made her arrival at 1:10pm.  She cried right away.  I felt so relieved, she was strong enough to cry.  She was whisked away though across the room.  I didn't get to see her or hold her.  My husband was watching what the neonatologist was doing and turned around and put his three middle fingers together, telling me that her hands where syndactyly.  They got her stabilized and brought her over to me so that I could get a look at her before the sent her up to the NICU.  I first saw Mallory's full head of beautiful, dark hair and then I saw her tall forehead and her mitten hands.  Apert Syndrome.

The next time I saw Mallory was right before they were to intubate her.  The nurse wheeled me up to the NICU to see her on my way to my recovery room.  That was probably the hardest moment for me.  I've never had to see any of my babies like this.  I've seen it on TV but never in real life.  Her nasal passages were too narrow to fit tubes in and she wasn't breathing as well on her own as they'd like.  She was just laying there.  Monitors and wires everywhere.  I wanted so much to just be able to scoop her up and cuddle with her.  To let her be able to touch me so that just maybe she could possibly know that anything she was about to encounter would be ok.  That Mom was nearby.  I was so scared for her.  They allowed my husband to take a quick picture and then we had to leave.  When we got to my recovery room we were both silent.  I felt like if I spoke I would cry.  It was the first time in weeks of trying to be optimistic that I felt like maybe things wouldn't be ok.  Everything seemed impossible and my little girl seemed to be suffering.  It was terrifying.  That began our NICU journey.

It was determined that Mallory would need some additional care and consults for her condition.  So she was transported to Children's in Milwaukee after 3 days at the hospital she was born in.  The transport was a big to do.  I was so worried about her drive to Milwaukee.  It was probably about an hour and a half from where we were.  The doctors that came with though talked us through what the trip would be like and said they would call us when they arrived.  My husband and I headed home so I could see my boys and wait for the phone call.  I wanted to make an immediate trip to Milwaukee to see her and get a feel for the new place she'd be staying for a while.  We finally got the phone call that they'd arrived safely.  She didn't much like the trip and they had to give her a little extra oxygen, but she did well otherwise.  

Since her arrival there, we've gone to see her every single day.  She's had some challenges but she's doing well.  She had some lung prematurity and with her narrowed nasal passages, breathing was something we needed to focus on.  We've met with a craniofacial doctor who is very confident in the plan for her future surgeries.  We are told he does amazing work as well.  He also has one of the best doctors on standby to do the surgery on her hands when we are ready.  They will be able to separate all of her fingers on each hand which is so fantastic.  There's been a little question as to what her actual diagnosis is.  A geneticist was in to see her and thought that her symptoms resembled Pfeiffer Syndrome instead of Apert Syndrome, so we are having a blood test done to find out.  Either way, the treatment plan is very similar.  

She's been in the NICU for 10 days now and she keeps getting better and better every day.  She is still using a feeding tube to eat, but a therapist will be working with her to get her bottle feeding.  She's completely off the O2 as of this evening, which is so great!  She's taking a pacifier and learning how to suck on it, which will definitely help with bottle feedings.  The nurses say that she actually loves her pacifier now!  She does still have a very narrow airway but it does appear she is breathing through her nose when she needs to.  We also got the good news today that she doesn't have a cleft palate!  This will definitely make teaching her how to use a bottle a little bit easier!  We are taking some very positive steps forward.  I don't know how much longer she'll have to be in the NICU, but every day she gets better and I cannot wait to bring her home!  I love her so much!  I love holding her and giving her kisses.  I love hearing her cry (we didn't hear it for 6 days because of the intubation) and changing her diapers!  It's the small things I may have taken for granted before that I am enjoying and embracing so very much.  

Mallory is going to have a journey ahead of her.  There is no getting around the surgeries she will have to endure to enlarge her skull to make room for her growing brain.  She will have to have surgeries to correct her fingers and potentially her toes if we decide to go that route.  There will be physical therapy and many, many doctors appointments.  But I feel very confident with our group of doctors and confident that she is getting the very best care she could possibly ever receive!  I can't wait to get our little lady bug home and start really getting to know her.  I can't wait for her big brothers to get to know her!  I can't wait to take millions of photos of her and continue to share more of her story with everyone!  She is going to be the light in all of our lives and I am so happy she was given to us!


Unknown said...

cathy thank you for sharing, my heart, prayers and blessings are with you and your family, you are all very strong and will get through the challenging journey ahead. There is so much love that will heal all the outcomes ahead. Hugs n love to you. Christina Conquest-Guenther

Anonymous said...

Your story is an inspiration. That you for writing it. Mallory is a sweetheart and a fighter.