Zuri's Story

With both Zuri and Kai celebrating their birthday in May, I thought it would be a fitting time to do a little reflection.  I have had this post in the back of my head for some time now.

 Zuri is turning four.  Hard to believe how fast she is growing up.

I am not sure how many of you are aware, but my pregnancy (and everything) with Zuri was not all smooth sailing.  This was before my time with blogging, when J and I lived in a tiny basement apartment in an area within walking distance to the Provo temple (we still talk about how much we love and miss the people in that area).  Both J and I were working full time and J was applying for graduate programs.  The beginning of my pregnancy was quite unremarkable--I didn't get sick to the point of throwing up, and other than being a lot more tired (as well as gaining weight), there wasn't a whole lot of change.

The company I worked for had a gym in the building, and we were required to take one hour lunches, so during my lunch break I would do a light work-out.  At my 20 week check-up they performed the routine ultrasound, and that is when the problems began.  The ultrasound tech verified Zuri would be a girl; she spent a long time looking at the colored flow of blood and oxygen, but we didn't know anything was amiss until she was finished.  She said that she didn't want to alarm us, but she found something wrong with the umbilical cord and the doctor would be in shortly to discuss the results.

After what seemed like forever (but was probably only five minutes), the doctor came in and explained that Zuri had what is called a single umbilical artery (SUA).  Normally, the umbilical cord has two arteries and a vein, but Zuri's umbilical cord only had one artery and one vein.  The most significant meaning is that she received only half the nutrients that a child with a normal umbilical cord receives.  Additionally, there is a higher risk of developmental delays, birth defects and more.  SUA is a completely random event and over half to two-thirds of children born with it are born completely healthy, without any chromosomal or congenital anomalies.  Of the remaining babies with SUA, some studies suggest that about 25 percent have birth defects, including chromosomal and/or other abnormalities. These can include trisomy 13 or trisomy 18.  However, the most common pregnancy complications that occur in infants with SUA are heart defects, gastrointestinal tract abnormalities and problems with the central nervous system. The respiratory system, urinary tract, and musculoskeletal system may also be affected. One in five babies affected by SUA will be born with multiple malformations.
Aside from these problems, between 15% and 20% of infants with SUA may suffer from intrauterine growth retardation. Single umbilical artery also has an increased miscarriage rate of 22% associated with it, likely due to the increased abnormalities. Furthermore, there is an association between SUA and low birthweight (less than 2500g) and early delivery (less than 37 weeks).  Taken From THIS article in Women's Health.

We took the news hard.  I had to go back to work after the ultrasound and I could barely function the rest of the work day.  Luckily, my boss was understanding, and I had very supportive co-workers.  I don't remember if I was even able to get any work done the rest of the day.   It felt as though all my hopes and dreams had been dashed away.  I was devastated.  We had planned to get a car seat and stroller for Zuri that weekend; even though we still went shopping and got them, at the time I remember feeling hopeless, as though there was no point.  The best thing we did was to continue forward.

As we struggled to accept the reality of the SUA, we did so in different ways.  I voraciously devoured anything that I could find about it online, while J didn't want to know any more than the information the doctor had given us.  He said that he just wanted to see how things would turn out.  He didn't want to mull over all the possibilities over the next several months, while I needed to know what to expect--to prepare myself.  We both held hope with the knowledge that there was a chance Zuri would be completely healthy. 

It was around that time that my blood pressure began to spike.  At 34 weeks I was put on bed rest for my blood pressure.  At barely 36 weeks I was induced.  Zuri came into this world at 4 pounds 13 ounces.  I was able to hold her for a few minutes after she was born.

I didn't know anything was wrong until my sister-in-law came crying into the room saying that they had rushed Zuri off (I thought she was just in the nursery) and they had to put oxygen on her (it ended up that her lungs weren't quite mature enough yet, so they had to do an oxygen treatment to get them inflated and working properly).  My sister-in-law was near hysterical, but I remember such a sense of peace and knowledge that Zuri would be okay.  I can't explain it, but I knew.

Zuri was in the NICU for 24 days.  She came home just a few days shy of her due date (which is typical--if your baby is in the NICU, they say to expect coming home right around the due date).  Our biggest hurdle was that Zuri just didn't want to eat.  They ended up inserting an NG tube through her nose to feed her.  When she would eat, her oxygen saturation levels would drop.  Other than that initial oxygen treatment, she was never on oxygen, but when she would eat she would forget to breathe.

 To this day, we struggle with Zuri eating.  She goes through periods, usually growth spurts, when she eats very well and we think, she finally has it.  Then she will slow down again.  She is small--consistently -3% on the growth charts.  Although she is four, she is the size of a child half her age.

We have been to every doctor, done every test, jumped through every hoop, to find out "what's wrong with her."  She has had everything from the FISH test (a genetic test-- we were specifically testing for Williams Syndrome, but it also gave us a more in-depth look at her chromosomes) to the sweat chloride test (to test for cystic fibrosis--now that was a leap--she didn't have any of the "symptoms" other than her size, but the pediatrician wanted to cover all bases).  We have had her on appetite stimulating medicines. as well as pediasure.  She has been in early intervention programs.  Everything comes out the same--she is completely "normal" except she is small (and has some minor gastrointestinal issues).

That's right.  As if eating issues weren't enough, our little one gets clogged easily.  We have her on a fiber and miralax regime, and even then she still gets backed up every couple of months--especially when there has been a change in her routine.  

Zuri is a mover.  She is high energy, go-go-go.  The only time she stops is when she sleeps (and she is even all over the place in her sleep).  She is very smart and determined.  If she wants something, she finds a way to achieve it.  An example is when she wanted to climb the stairs before she was really competent.  We put up gates to block her access, but she would find ways around it--such as climbing on top of things to get to it--and even dragging things over to the gate to climb over so she could get to the stairs.  When we had finally had enough and took the gate down, she didn't bother with the stairs--it was no longer a challenge for her.

She is extremely kind and sensitive; quick to give out hugs.  She is highly social and loves to play with other kids.  She loves animals, especially dogs.  She is quick to learn and loves learning.  She is becoming very articulate and is in the middle of the "why?" phase.  Everything is why?
    --Mommy, why are you exercising?  Why make you feel better?  Why taking care of Kai?  Why cars go fast?--  When you answer, she wants to know why to the answer.  It is both endearing and sometimes frustrating, especially as she has become more articulate over the last few months.  She will repeat herself until she is certain that you heard her and understand what she is trying to tell you. 





Zuri is quick to
laugh--and her laugh is infectious.  You want to hear more.  When she is mad she will let you know.  "I so mad!"  If she is really mad at you she will say, "you are so busted!"  (Yes, we are Phineas and Ferb fans here.)  It is so fun to watch her learn and grow.

She loves to help.  She is always trying to help--whether it is with cooking, cleaning, taking care of Kai, etc.  As much as we can, we let her be involved in helping with Kai.  She knows how to silence his alarms, and will pat his back and say, "it's okay, Kai." 

Her favorite toys are balls, stuffed animals, and little plastic dinosaurs.  She can be very girly--she has to have hairspray when I do her hair, and she loves to play dress-up.  If her clothes get wet or dirty, she has to change them.  She can also be very tom-boyish.  She is all about climbing, jumping, running, bugs, and being outside.

She can count to 25 (after that she starts mixing numbers--or gets bored and starts doing it on purpose) and knows her ABC's, most of them by sight.  She knows her shapes and colors; her favorite colors are white, pink, and yellow.

Everything is a game to her--the sillier the better.  She loves to chase and be chased.  She is full of curiosity and fun with a heart of gold.

I can't believe that it has been four years already.  So much has happened in our lives in those four years. Zuri has been a trooper through it all.  She loved Georgia just as much as we did--probably because we were always out exploring!

It has been a joy and a blessing to have her in our lives.  We look forward to the years ahead!

Happy 4th Birthday, Zuri!