Tuesday, November 25, 2014

An Interview with Preemie Mom - Nancy Kirby

I'm excited to interview preemie mom, Nancy Kirby today. Nancy is from North Babylon, New York, but recently moved to Melbourne, Florida. 

I met Nancy virtually at an Intrauterine Growth Restriction (IUGR) Facebook Support Group. Although we have never met in-person, we have become close friends. It's amazing how a condition, such as IUGR, can bring two moms together.

Nancy has adorable twin preemies. They are Monochorionic/Diamniotic (identical) twins who shared a placenta and a chorionic sac, but had their own amniotic sacs.

Photo Courtesy of Nancy Kirby
Nancy's incredible boys were born at 31 weeks and six days. Andrew John (A.J.) Kirby, "Baby A", was born weighing three pounds, 13 ounces. A.J. was 17 inches long. 

John David (J.J.) Kirby Jr., "Baby B," was born weighing one pound, nine ounce. J.J. was 13 inches long.

A.J. spent 28 days in the Neonatal Intensive Care Unit (NICU). He celebrated his first Thanksgiving in the hospital and was able to come home shortly before Christmas.

J.J. spent 80 long days in the NICU. That's where he celebrated many holidays, including his first Thanksgiving, Christmas, and New Year's Eve.  He came home shortly before Valentine's Day, making the holiday extra special.

Nancy's twin boys turned one year old (10 months adjusted) on November 22. They are growing like weeds. A.J. is approx 21 pounds and 32 inches tall. J.J. weighs about 16 pounds and is 28 inches tall.

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Preemie Blessings: What was your experience like being pregnant?

Nancy: After trying for almost a year to get pregnant, my husband and I found out on Mother’s Day 2013 that we were expecting. We realized this after taking a home pregnancy test. 

On my birthday, which was a week later, I went to have a sonogram to confirm that the pregnancy was good -- and we were thrilled that the sono tech had said everything looked good. Upon viewing the sonogram I asked the tech to move up a bit -- and there they were -- TWINS! The first 4.5 months of my pregnancy were great. I was put on immediate bed rest by my OB because I had a high stress/physical job and was at a high risk for miscarriage, but everything was smooth sailing. 

We found out at 13 weeks that we were 100% having two boys. The doctors were 90% sure they were identical. At my 17 week appointment with my Maternal Fetal Meicine doctor -- who I was sent to for monitoring because I was considered have a high risk pregnancy -- we learned J.J. had started to fall behind in growth by one week. I was checked for Twin to Twin Transfusion Syndrome (TTTS), but the boys’ fluid levels always looked great. 

J.J started showing some intermittent/absent ended cord flow to top off the slow grow. I was given a few options by my doctors. My husband and I were just heart broken when they mentioned IUGR possibly Severe Intrauterine Growth Restriction (SIUGR) between type 2 and  3. 

I came home from my doctor and did as much research as I could. I found out that The Children’s Hospital of Philadelphia (CHOPS) was opening a study similar to the procedure used in TTTS babies to help separate umbilical vessels. We drove to the hospital to meet with the doctors and specialists to see if we could be part of the study. Unfortunately, the study had closed, and we were unable to participate. This ended up being a godsend. The boys were checked by the CHOPS cardiologist and had several hours of fetal Non-Stress Tests (NSTs) and sonograms. 

At the end of the day, we met with our team of doctors, J.J. was diagnosed with SIUGR. It was their suggestion for us to selectively terminate at least J.J. to help save A.J., but they really thought we should consider terminating the entire pregnancy and starting over because they told us we would never reach 24 weeks “viability." There was never a thought in our mind of terminating either baby -- let alone both. We thanked them for their time and headed home. 

The next day, I spoke to both Maternal Fetal Medicine doctors and we told them that we were going to carry on with our pregnancy and leave things in God’s hands. Our doctors were 100% on-board. I was seen by Good Samaritan Maternal Fetal Medicine Dr. Dina El Kady and Dr. Sarina Woo every other day for doppler checks and NSTs and bi-weekly growth scans so that they could keep a close eye on the boys. I read up on anything I could do to help the boys gain weight. I drank two Ensure nutrition shakes a day; followed a high protein diet; laid on my left side night and day to increase cord flow; and took double doses of folic acid and baby aspirin. We celebrated every single week we made it through. 

At 26 weeks, I was given my first round of steroid injections to help mature the boys lungs should we have to deliver because J.J.'s cord flows was still persistenly intermittent and heading to absent ended flow. 

At 28 weeks, J.J. showed some reverse flow in his ductus and I was hospitalized for 24 hours for monitoring. I was given a 24-hour magnesium sulfate drip to help prevent brain bleeds. After 24 hours of literally having two nurses stand over me holding doppler’s they decided that my NSTs were good enough for me to go home. This was after they redid the doppler’s and saw that J.J.’s cord flows almost looked normal. At that point, it was decided Maternal Fetal Medicine would see me seven days a week in case something should come up that needed immediate medical attention. 

At 29 weeks, A.J. began showing increased fluid around his heart. I was sent to a pediatric cardiologist who measured the fluid the levels. It was decided they were within high normal range, but the doctor would check them in the NICU after birth and six months later. 

Photo Courtesy of Nancy Kirby
On Thursday, November 21, 2013, I went in for my daily check. J.J.'s cord flows had finally started showing constant reversal. I was admitted upstairs and scheduled to deliver the boys the very next morning. I was given a second “recovery dose” of steroids that evening -- and another 30-minute bolis drip of magnesium sulfate. At 10:04 a.m. on November 22, 2014, we delivered two healthy boys -- scoring a nine out of 10 on their APGARS.

Preemie Blessings: Did you anticipate that your baby would be born early? If so, why?

Nancy: We anticipated the boys being much earlier than they actually were based on what CHOPS had told us. Having identical twins is very high risk. Most doctors will not allow you to go past 37 weeks. Carrying twins, and coupled with J.J.’s SIUGR, we knew any day we could go to the doctor and that would be the day.

Preemie Blessings: What was your experience like in the NICU? 

Nancy: Our NICU experience in the beginning was very traumatic. The first few days, we were so scared. We didn’t know what alarm to look at, or what bell meant something serious. I remember on the second day, A.J., who was supposed to be my big healthy baby, was having Bradycardia’s over and over again and ended up having to be intubated. I was so upset not being able to hold either baby. They were in the same room, but not next to each other -- so that of course was upsetting. Seeing my J.J. so tiny and helpless was really one of the scariest things I had ever been through in my life and then you see it…The family who loses their child. We were that family nine nine years prior -- when we lost our oldest daughter's fraternal sister and suddenly it puts things into perspective. I began talking to those parents who lost their little girl and their surviving twin was still in the NICU. We shared stories -- and then understood how lucky we were to have gotten the care we did from our Maternal Fetal Medicine group. We always figured our seven day a week visits were status quo. J.J. had one blood transfusion. Watching A.J. come home 50 days before J.J. was even harder than leaving both boys, but we were very blessed with pretty much two grower/feeder babies in the NICU.

Preemie Blessings: How were medical advances and technology used to improve the health of your twins?

Nancy: Medical advances and technology in every sense of the word saved our babies lives. Nine years ago, when we lost our daughter, our doctors didn’t even give us an explanation for her passing. We were told that she just stopped growing. 

Preemie Blessings: What has been our favorite part of parenting preemie twins? And, what are the biggest challenges?

Nancy: My favorite part of parenting preemie twins is looking at them and knowing that we were given a gift to be able to watch two miracles grow right before our eyes. Our biggest challenges were having one baby home and one still in the NICU -- and feeling like you have to pick between who needs you most. Battling J.J.’s terrible reflux was also a challenge. After seven months, it finally subsided.

Preemie Blessings: How are your preemie twins doing today?

Nancy: Our boys are doing fantastic! Both are happy, healthy well adjusted boys. 

Photo Courtesy of Nancy Kirby
They love each other so much. They are both crawling, eating solids, laughing, and singing. They have both far exceeded any of the milestone goals their physical therapists and feeding therapists had for them in the first year.

Preemie Blessings: How has having preemie twins changed your life?

Nancy: Having twin preemies has changed us in so many ways. The small milestones a child makes are often taken for granted. When you have a preemie, the smallest thing, like being able to bottle feed your baby is such an excitement, or being able to keep them out of their isolette for an extra five minutes is the best part of your day. Being a preemie mom has made me a better person. I am much more compassionate about what other families are going through. I appreciate every second with my kids. All three of them are daily reminders of just how fast time passes by and how precious life is.

Becoming a preemie mom also inspired me to start a NICU support group at the hospital in which I delivered. The support group is called, "Good Samaritan NICU Parents and Nurses." I wanted to find a way to stay connected with parents, preemies, doctors, and nurses we met in the NICU. This network of people became family to me. Today, the support group consists of more than 100 parents, neonatologists, and nurses.

Preemie Blessings: How do you plan to teach your preemie twins about prematurity?

Nancy: Our boys are still too small to understand about prematurity, but our nine-year-old is very protective of her brothers. She teaches her friends and many adults just how important it is to wash your hands and to ask the parents of any baby -- especially a preemie -- if it is ok to touch them. You wouldn’t believe the number of adults who want to touch a stranger’s children -- especially twins. Our daughter tells people that she had to wait 80 days to meet J.J. and 28 to days to meet A.J. and she never wants them to go back into the hospital again. That is why people need to stay away when they have even a little cough. We are very blessed to have such a great daughter and big sister to watch after her brothers.

Preemie Blessings: What advice would you only share with a new preemie mom (and everyone reading the Preemie Blessings blog)?

Nancy: Being a preemie mom is a rollercoaster of emotions and it is ok to feel every one of them. Don’t keep them bottled up. A year later, there are many pictures that I can’t look at without crying. And, I can’t share our story without sobbing. For every down you face, you will see a million more ups. Preemies are born fighters. Have faith in them -- and never lose hope in miracles. Celebrate every milestone -- take millions of pictures. I say it all of the time -- it seems like so long ago our family left the NICU on the 5th Floor of Good Samaritan Hospital yet it also seems that it was just yesterday. To quote Winnie the Pooh to Piglet, "Sometimes the littlest things take up the most room in your heart.” 

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I'd like to thank Nancy for sharing the incredible story of her preemie twins! It is my hope that I will be able to meet Nancy and her family in-person some day.

If you liked what you read today, and don't want to miss future tidbits, challenges, and interviews with preemie parents during Prematurity Awareness Month, then don't forget to follow me:  Email Subscription |Facebook | Twitter | Instagram | Google+

2 comments:

  1. So thankful for Nancy, Mary, Jessica, and Michelle for sharing their stories, and for their little ones. You ladies are a strong bunch and you give hope to others who are beginning their preemie journey.
    God bless all of you and your little ones.

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    1. Thankful thankful for Rebecca and her little one too. You all are amazing ladies.

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