Faces of Prematurity Friday~Zoe's Story

Friday, October 19, 2012

This is the beautiful story of the even more beautiful Zoe. Sheli is a local preemie Mama and a great support to the many that are joining the ranks in Preemie Mommyhood.
This is also a great example that preemies CAN breastfeed...maybe not all of them due to various medical issues and concerns, but there is hope. And if you're just beginning this process and want to exclusively breastfeed your preemie, I pray this gives you the hope that it is possible.
Thank you for sharing, Sheli.
As I sit to write about our journey the first thing I think of, is where to start?  For us, Chris and Sheli V., it would be May 22, 2008.  This was the day our first daughter, Analeigh Estella V., was born at 10:07am.  We were told at 11:05am that she was no longer with us due to chord complications.  Needless to say our hearts broke, like never before, on that day. 
Fast forward to March 2009 when we found out we were once again pregnant.  Fear and worry don’t even begin to explain how I felt.  We were seen by the midwives at Lisa Ross Birth and Women’s Center as well as High Risk at UT Medical Center.  Monday July 6th we had an ultrasound at UT and they said our baby (whom we called Beany due to not knowing the sex) looked great.  Friday, July 10 about 2am I started feeling contractions and called both my midwives and high risk.  Both said to call back if I had 5 in an hour.  So I went back to sleep only to be awoken at 4 with more contractions.  Drank water and laid on my left side and they went away; back to sleep again.  At 6am I once again woke up with contraction this time in pain.  By 6:45 I had 5 and we called both again.  We were told to head to the hospital and they would give me something to stop the contractions. At 7:05 my water broke at the UT Medical Center Exit.  My husband rushed me to the ER and from there to L/D triage. 
At 7:11am I gave birth to Zoe Pierson V. at 25 weeks; weighing 1lb 11oz and 14.5 inches long.  I don’t remember the birth it was all a blur.  We were told it would be at least an hour before we heard anything about our baby girl. Needless to say fear set in and I was beyond afraid of losing yet another baby.  That had to be the longest hour of our life.   While we waited they ran several tests to try and figure out what caused the early labor.  No conclusion was found and it left us to believe that the stress of worrying so much caused it.  At 8:10am Ruth Ann walked in and said, “She is doing good”.  My eyes fill with tears even now as I think about that moment.  She reported to us what they had done and what to except over the next 24 hours.  Of course our first question when can we see her? 

On the way to my room we stopped by to see our little Beany for the first time. I don’t have words to explain how I felt.  She was alive, moving, breathing, and so little yet so perfect.  The first thing I did was ask a question and I didn’t quit asking questions until we left.  I secretly think they all threw a party when the Voorhees Family graduated the NICU J .  I needed to know what every machine, number, line, alarm was.  What each tube and wire was doing; what was in the IVs.  How do 25 weekers fair, what to except, how long will we stay.  One memory that stands out is when I asked her nurse, Abby , if I would be able to breastfeed her.  She gave me this look, which I would get many more times over the next 12 weeks, and said let’s get her breathing first. 
Zoe went through her honeymoon phase, as do most preemies, where she was on the bubble cpap for 30 hours.  She began to drop her stats and retract pretty badly, so they moved her back to the vent.  Her setting remained pretty low and all seemed to be doing fine for a few days.  Her vent settings started going up, she needed more O2 and they started seeing blood when they suctioned her vent tubes.  Her neonatologist said he was pretty sure her PDA had not closed and ordered her heart to be scanned.  A few hours later his theory was confirmed, her PDA was considered extra large.  He informed us that they would try 3 days of medications and if it didn’t help we would have to do surgery.  After day 2 with very little change they decided to go ahead and do the surgery.  Our little Beany was only 5 days old and weighed 1lb 5oz when she had a PDA ligation.  She handled the surgery like a champ and there were no complications. 
She did however struggle getting off the vent.  She maxed out the traditional/conventional vent and her blood gas tests were getting worse.  They did a chest x-ray and discovered she had developed PIE in her right lung and possible signs in her upper left lung.  We were told they were going try HFOV (High Frequency Oscillatory Ventilation).  To say I hated that machine would be saying it nicely.  At first it really seemed to help but then she started needing more and more O2.  We spent several days at or near 100% O2.  Fear and worry once again set in and non-stop praying for God not to “take another child from us”.  I remember making our routine 3AM call in, giving nurse Stefanie our number and hearing the best news in a while; she was down to 72% O2.  Slow and steady over the next 2 weeks her O2 was down to 21% and we got the news they were going to try her on the traditional vent again.  At one point the neonatologist allowed us to see her PIE x-ray and then one from 3 weeks later.  The PIE had completely cleared up; he said he couldn’t explain it.  That there was always some evidence but with Zoe there was none. 
During one of her regular blood work test her white blood cell count was very low so she was put into isolation.  Gowns, gloves and cap were worn just to sit beside her bed.  Blood samples and cultures were sent off to be tested.   After 24 and 48 hours it was reported that nothing had grown on the cultures and blood test were all negative.  Thankfully she was quickly taken off medications and out of isolation.
About this time they also started giving her breast milk via a NG tube.  In about a week’s time she was on full feeds and her vent levels were coming down.  We were on the upside of the roller coast ride.  Or so we thought until we heard the dreaded NEC.  One neonatologist said she had it the other said he didn’t think so. None of the test 100% clear, so she got treated for NEC.  She was pulled off breast milk and put back on IVs and medications.  This time around the IVs were more difficult because she kept pulling them out.  After the 4th one got pulled out in less than 2 days I was told one would be put in her head.   For the next 2 weeks we had daily x-rays and meeting with her neonatologist to discuss what was going on.  Thankfully the NEC, if she ever had it, never got any worse. 
Next came the eye exams and whole new set of terms to learn.  ROP, stages and zones.  Zoe was diagnosed with stage 1 ROP.  She was closely watched and monitor but thankfully this was one of the easier “bumps” in the road for us.  It never progressed from Stage 1 and by 8 months old there were no signs of ROP. 
Along with pulling out IVs Zoe began to pull out her vent tube.  After she pulled it out for the 3rd time in a day they tried her on the V-CPAP.  The settings were rather high but no more vent tub and they had to use  ½ roll of tape to keep it in place.  With continuous lower settings and great blood gases we were told they were going to try the B-CPAP.  She handled it amazingly and was rewarded with a nasal cannula.  What a wonderful day we got to see her face without all those tubes and tape.  We were once again riding the high side of the NICU roller coaster. 
No sooner did we get her breathing pretty good the feeding issues started.  Stomach bile started coming up her NG tube and it was decided we would move her to NJ tube.  The issue continued so an upper GI study was done to see if there as any blockages in her intestines.  The study showed some reflux but no blockages.  It was decided the cilia in her intestines were not developed and she was given Reglan.  It would help keep the milk moving down rather than coming back up into her stomach.  This resolved the issue and she was back up to full feeds in a few days.
This development brought on one of the happiest days of my life; holding Zoe for the first time.  Those 30 minutes of kangaroo care with our little Beany gave me so much hope that she was going to be okay. 
We were finally getting to that point where the neonatologist only spent a few minutes talking with us and the nurse didn’t have to stand guard over Zoe 24/7.  She was growing, gaining weight, using less and less O2 and even started bolus feedings.  I felt like I could go pump, eat and use the bathroom without worrying the whole time. 
There was talk of Zoe moving into a private room in the Coves, but we had one more issue come along we had to deal with first.  She started to run low grade fever and not act like herself.  Blood was drawn and set off to be tested and for a culture.  We received the dreaded news that it was staph.   After further testing we were informed that it was probably a false positive. 
A few days later Zoe was transfer to her own room in the Butterfly Cove.  It was amazing how much more peaceful and calm it was compared to Dragonfly.  At this point she was on less than a liter of O2 and she was getting all her milk in 2 hours.  I once again asked if I would be able to breastfeed her.  I was told I would be able to try once she her bolus feedings were down to 30 minutes.  After 9 weeks of pumping my milk supply was starting to go down and nursing Zoe was very important to me.  After discussing the matter with her neonatologist, he agreed to 10-20 minutes of non nutritive nursing (nursing after the breast had be completely emptied) a day.   I immediately pumped and asked to put Zoe to the breast.  I was told most preemies, especially those as small as Zoe, have trouble latching and even if she did the chances of her executively breastfeeding were slim.   Not only did she latch on the first time, she went on to nurse for 28 months (only to be weaned due to early labor with my son)! 
Once she started handling her bolus feeding at 30 minutes, I started breastfeeding every chance I got.  At first she would get tried easily and not be able to take a full feeding at the breast, so we had to supplement (breast milk) via the NG tube.   As each day passed she grew stronger and was able to stay on the breast longer.  After a week she was exclusively nursing.  This is when the #1 fear of any breastfeeding mama hit me, is my baby getting enough milk?  And to top it off Zoe was a very slow weight gainer, so it made me question my supply even more.  I truly believe I used up all of Nurse Jami’s  patience asking her multiple times a day to bring in a scale to weigh her. 
 A few days later we walked into Zoe’s room to find a “going home” list written on the white board. My eyes filled with tears.  Day by day one more thing was checked off the list and before we knew it Jami and Dr W. walked into our room-in room and said, “you hit the NICU lottery, you’re going home on Monday”.  At first I was so excited calling, texting and emailing everyone the wonderful news.  Then fear set in.  I am about to take a 37/3 week old, 4lb 6oz baby home on 1/16th of liter of O2 and apnea monitor. 
Monday, October 5, 2009 (Chris and I’s wedding anniversary), the day we thought would never come, came!  Release papers were typed up, pictures taken, good byes said and Zoe was buckled into her car seat for the first time.  Chris and I carried our little Zoe-Bean through the halls of UT beaming with pride.  We had done it! After 12 weeks and 3 day in the NICU we were going home as a family!

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