Thursday, May 31, 2012

Happy Birthday, Zadie!

I really can't believe a whole year has gone by since the day Zadie entered our lives.  It's been quite the crazy year.  I thought today, I'd share more of what we all went through that day.  Because while it was one of the best days of my life, it was also a pretty horrible day at times.

I had a scheduled C section for two reasons.  One reasons was because I had had a C with Jonathan and the other was the fact that I had so much fluid and they didn't know why.  Once they got me open, they were suctioning out all the fluid.  My level of fluid was amazing to everyone in the room, and they had to get a second suction canister.  My doctor told me I had 2 1/2 liters of fluid, which apparently is a lot.  Next, to get Zadie out, there was a lot of pulling and pushing.  She was out!  It's a girl!  I teared up a little when I heard those words.  Lots of hair, just like when Jonathan came out.  They brought her over to the exam table and the neonatologist examined her.  BJ went over to take pictures and I saw the doctor talking to him.  I heard "cleft palate" and I was trying to hear more.  I finally caught BJ's eye and asked, "is she ok?" He smiled and said, "she's fine!"  He told me that the doctor said she had a small cleft palate, but that it wasn't a huge concern.  There would be surgery down the line.  My OB further reassured me, saying she hadn't even seen it (not that she necessarily would).  If only anyone had any clue what we all had ahead of us!

Anyway, I got to hold her and she looked so much like Jonathan!

Next, I had to be closed up and Zadie went off to the nursery to be taken care of.  BJ went with her, and later came to see me in recovery.  When I was ready to go up to my room, they called for transport.  It took FOREVER.  It took so long that BJ actually went to the newborn nursery and "stole" Zadie away so that I could see her.  Later on that day, I would be SO happy that he did that.

I was finally taken up to my room on the 6th floor.  Since I had given birth to Jonathan in the same hospital, almost exactly three years earlier, they had changed a lot.  All maternity rooms were now private, there were no set visiting hours, and you could have as many visitors as you liked.  I was looking forward to these changes, since the day Jonathan was born, I had a roommate and they were strict about the two visitors at a time rule.  My room looked like a hotel suite.  My sister-in-law brought Jonathan later on in the afternoon, along with my niece and nephew, Stevi and Nicholas (future Godparents, although no one knew that at the time).  My father-in-law also came.  Meanwhile, we were all (im)patiently waiting for Zadie to be brought to the room.  I called my nurse several times asking where Zadie was.  Finally, I was told to call the newborn nursery to ask.

I gave birth to Zadie at 11 am.  At this point, it was probably around 5 pm.  I called the nursery and was put on hold.  When the nurse came back on the line, she said, "oh, they tried to feed her, and she didn't do well, so she's going to the NICU."  That was the beginning of one of the best days of my life being turned into one of the worst.  BJ was out of the room at the time and he came back in to see me sobbing on the phone.  I could just barely tell him that she was ok so that I didn't freak him out even more.  Even worse, BJ couldn't go see her immediately.  They had to set her up in the NICU, so he had to wait for about an hour.  He finally got to see her and reassured me that she was ok.

Meanwhile, a plastic surgeon from the craniofacial team at St. Barnabas had been called in by Zadie's pediatrician.  He examined her and was the one who diagnosed her with Pierre Robin Sequence.  He told us that she would have to stay until she learned to eat on her own.  I asked him how long he expected that to take, and he said maybe several days to a week.  A week!  Just the idea of her being in the hospital for a week killed me.  Again, if only we had known what we had ahead of us!

Since I had a C section, I couldn't get out of bed for 12 hours from the surgery, so that meant I had to wait until 11 pm.  I was able to be wheeled down in a wheelchair to see my little girl.  She was sleeping, but hooked up to all sorts of tubes and wires.  It was a relief to see her, but so sad to know I couldn't hold her or feed her or even sleep near her.  Unfortunately, the NICU is on the 3rd floor and I was on the 6th floor, so I was about as far away from her as I could have been.  And this is how I left Zadie on her first day of life.

I'm so grateful that tonight, I get to tuck her into her own crib right down the little hall from our bedroom and tomorrow morning I get to get her up and play with her and feed her.  Happy birthday, sweet baby girl.  You've come so far in the past year and I can only imagine what you'll accomplish in the next year!

Friday, May 25, 2012


I've been thinking a lot lately about what I was doing last year at this time.  I was very pregnant with Zadie, and I was blissfully unaware of what the future had in store for us!  I was going to the high risk group for weekly ultrasounds because of my abnormally high level of amniotic fluid, a condition called polyhydramnios, but none of those doctors figured out why it was there.  I googled that word a hundred million times, but never once stumbled upon Pierre Robin Sequence.  In retrospect, I had noticed Zadie's small chin in at least one of the ultrasound pictures, but I had no idea it could mean anything.  I had no idea it had a name, micrognathia, and that it would turn out to be the main struggle she would face.  So, ladies, pay attention and question everything.  But, don't make yourselves crazy because a lot of times, there's nothing you can do before the baby arrives, although preparation is always nice.  This is the last ultrasound I had before Zadie was born.  Notice the small chin!

Wednesday, May 23, 2012

Swallow Study!

Zadie had her long awaited swallow study today.  The last time she was admitted to the hospital with pneumonia, her pulmonologist suggested that perhaps she was aspirating and therefore should not eat by mouth until she was able to get a swallow study.  That is where they xray you while you eat to see where the food is going (and hopefully not into the lungs.)  Then, Zadie had her palate repair and had to recover from that and finally was cleared last week to get the study.

Today was finally the day.  I pureed up some banana and breastmilk (who wants some?!) in my awesome  Blendtec blender and dug out the sippy cup that she hasn't used in about a month.  We headed off to the hospital without really knowing what to expect.  When we finally got into the room, they sat Zadie in this little chair and strapped her in.  She was so ticked off!  I put on my big lead vest and they set up the xray camera next to her.  It was cute to see her little head moving around on the xray screen.  After they added the barium to the banana puree, I started to feed her.  She was flipping out, probably very hungry and not happy about sitting in that seat at that moment.  But they kept telling me to give her more, so every time she opened her mouth to cry, I'd just stick another spoonful in.  I was trying to watch the screen while feeding her, and I did get to see her swallowing!  Then we tried just the straight breastmilk and she did great with that, too.  It was all very fast-paced and was over pretty quickly.  She passed with flying colors!

With just a week and a day to spare until her birthday, Zadie says, "Bring on the birthday cake!"

Sunday, May 20, 2012

Moving right along.

Zadie had her second post-op follow up with her surgeon last week.  He said she looks great and he said go ahead and feed her anything we want!  Wonderful!  The only problem is, the last time she was admitted to the hospital with some pneumonia like symptoms, her pulmonologist became concerned that all of her troubles may stem from aspiration (breathing food or milk into her lungs) rather than an infection.  Most other doctors, including her pediatrician and the surgeon who repaired her palate, doubt that she is actually aspirating.  I kind of doubt it, too, because every time she's been sick, a dose or two of antibiotics have turned her around almost 100%.  But, regardless, I want to be sure that we are checking everything, so we are holding off on any oral feeds until she gets a swallow study.  This was Zadie's last oral meal, delicious avocado!

Zadie is scheduled for the study on Wednesday morning.  That is a week and a day before her birthday so we're really hoping for good results so that she can stuff her face with cake on the 31st!  She's definitely dying to eat again.  When we eat in front of her, she can't take her eyes off our food.  I hope she rocks the study on Wednesday!

Off the topic of Zadie, today a very good friend of our family received a long-awaited heart transplant.  We're really excited for him and his family!

Sunday, May 13, 2012

Happy Mother's Day!

Last Mother's Day, I was very pregnant with Zadie, and we went to the Turtle Back Zoo.  I hadn't been there in years and I had forgotten how hilly it was!  It was rough with the big baby belly.  It was really fun, though, and we ended up buying a membership that day.  I figured that I'd be home with Jonathan and a new baby all summer and it would be a good thing to have.  It turned out it was GREAT to have, since most of our summer was spent going back and forth to the hospital, and I could take Jonathan to the zoo for a quick trip, even just to ride the train.  

Today, we'll be going out for an early dinner to our favorite restaurant, Don Pepe II.  I'm very grateful to have two really great kids.  I feel very lucky that Zadie is doing so well and hopefully by next Mother's Day, most of her issues will be in the past!  I wish that my own mom and BJ"s mom could be here too, but I know they are watching over us.  

I hope all you moms have a wonderful day!  

Tuesday, May 8, 2012

In honor of nurses week.

I complain a lot about our home care nurses.  However, in light of it being nurses week, I wanted to say thank you to all the nurses who have taken care of Zadie over the last 11+ months and have therefore helped us out immensely.

The nurses in the NICU were amazing.  We had no idea what to expect, and were kind of flying by the seat of our pants in the early days, and we were lucky to have all of those wonderful ladies.  One nurse allowed us to bring Jonathan in briefly so he could see his baby sister, even though it was against the rules.  Two nurses, Veronica and Patty, requested to be Zadie's primary nurses, meaning that they were assigned to her anytime they worked.  We became very close with them, and still are in contact with them.  I could name many more nurses who spent time with Zadie and treated her like she was their own babies during those ten long weeks.  We had to trust them to take care of her, and they made it easy.

As soon as we arrived home from the hospital, there were four nurses plus the director of nursing from our home care agency waiting for us.  It was hard to get used to, and in a lot of ways, I'm still not used to having other people in our house.  But, these women allowed us to get sleep at night and get comfortable with taking care of Zadie at home.  We're old pros now, but in the beginning, we definitely needed the help.

We also know a lot of nurses and nurses-to-be in our personal life.  Zadie's godmother and cousin, Stevi, will be getting pinned this month and Zadie will be at her commencement, cheering her on.

Thank you to all the nurses who have helped Zadie and us on this journey!  I hope for many reasons that she will not require private duty nursing much longer, but while she does, I'm grateful to have them.

Tuesday, May 1, 2012

Morphine is good!

Today was a long day! Up before 5, anxiously waiting and waiting and waiting, and then seeing Zadie post op, swollen and bleeding. Not how you ever want to see your little baby girl, but she was a rockstar. The nurse in the recovery room said she sees kids who have had less done who are much more miserable than she was. Thanks to my PRS mommy friends, Angela and Kris, we had an idea of what to expect. I don't think you can ever be fully prepared to see blood practically pouring out of your baby's nose, mouth and trach! Uncle Geoffrey, Aunt RayAnne, Emma and Grace came for a visit and brought Zadie a balloon. How did they know she loves balloons??? Zadie was standing up and playing a bit in her crib tonight. She might have done a little too much, because she was pretty uncomfortable a little later, and they ended up giving her morphine. No need to be a hero, Zadie! Daddy's home with the doggies, and I'm camping out with Z. Oh, and it's St. Joseph the Worker Day, and we're at St. Joseph's Hospital, so maybe it's a good sign? On that note, good night!


We were up before 5 am this morning, and it was thundering, lightening and pouring rain when we left the house. It was very similar weather the day we brought Zadie home from the NICU, so maybe that's a good sign? She's in surgery right now. I was able to go into the OR with her until they put her under. She was fine. I got to wear a cool onesie outfit to go into the OR. BJ and I are in the waiting room, with our contraband munchkins. Apparently, you aren't allowed to have food in here.