Birth Story:

       February is a month of love, and our family has been loving a new baby.  Did you know February was also Rare Disease Awareness month?  It was designed as such in 2008 because February has a rare number of days.  I didn't know until it came around this year.  In the same way, I didn't know what Prader-Willi Syndrome (PWS) was until two months ago when we were told our newborn was being tested to determine if that was part of his diagnosis.  He brought some new challenges and a steep learning curve, but we love our new baby very much.  Just when we thought we knew all about parenting, he is teaching us something new.  I have heard that God gives special babies to special parents.  I don't think that is true.  I think special babies point ordinary parents to Christ in a whole new way.  I think special babies show parents just how ordinary and powerless they really are.  We are not special or extraordinary.  We are regular people trusting the Lord one day at a time.

We welcomed our second son, Enoch, on December 7th.  After a routine ultrasound at 40 weeks, our doctor gave us an unexpected call.  Due to his size and what appeared to be excessive adipose tissue, the doctor recommend a repeat c-section rather than the VBAC for which I had hoped.  This turned out to not only be a good decision but one that saved our son's life.  When he was born, he was floppy, not breathing, and covered in meconium.  He was taken to the NICU where they helped him breathe and stabilized his blood sugar and temperature.  Once all of those were accomplished, it was assumed that he would gain muscle tone and become more alert.  That, however, was not what happened.  We waited in the NICU for days which turned into weeks as test after test came back within normal parameters.  Though the tests said "normal" we knew something was going on with our son who though his breathing improved, continued to show no interest in waking to eat and had difficulty sucking.

At first, we thought he would be out of the NICU within 36 hours.  Then we thought he would be released around the same time I was discharged.  Then we realized we were in for a more extended stay.  The Lord blessed us with the use of a room through the Ronald McDonald House at the hospital.  This allowed us to stay right in the NICU, at the end of the hall where Enoch was located after I was discharged.  I was not very mobile, having just had a c-section, so we were able to continue using the wheelchair from the hospital.    We were also blessed by our family, friends, and church.  My mother, who graciously came down to be with us for his birth, continued to stay at our house with our older two children.  She remained to help us until we were home, and we felt confident that I was ready to be home with all three kids without additional help.   Though visitors to the hospital were limited, our friends continued to be with us via phone calls, text messages, meals sent via Door Dash, money sent via PayPal, and continual prayers.  In the same way, our church family continued daily in prayer with us as we shared updates.  They joined us in the lows and highs, praying for our baby, our other children, and us as we navigated this uncharted territory.  We had others who had been through NICU stays offering support and words of encouragement.  Our church contributed to our spiritual needs through prayer, to our emotional needs through words of encouragement via text message or phone call, and to our physical needs through financial, food, and transportation help.  

The night before Enoch was two weeks old the doctor came to tell us the genetic test results were back much quicker than expected.  Our son was missing genes on his 15th chromosome consistent with Prader-Willi Syndrome.  We had been hoping and praying that he would “just wake up.”  We thought, with all those normal test results, he must just need a little more time.  That night we were told that though the overall prognosis was good, our baby was going to have some challenges.  Our best shot at leaving the NICU anytime soon would be to have our baby put through surgery to insert a gastric tube (G-tube) to make it possible to feed him sufficiently while he was still learning to suck.  We were hoping to get this done and make it home in time for Christmas; however, that was not to be the case.  Enoch did extremely well coming through surgery.  His recovery was quick and seemed much easier than expected.  We had to wait through the holiday weekend to get the necessary medical equipment to be able to take him home.  We did finally receive it and were discharged on December 27th, 21 days after his birth.  

While his diagnosis may be difficult to deal with, I have realized that there is much for which to be thankful.  We have such a great support system.  Our family, friends, and church were not just there for us for a week or even just for the NICU stay.  They continue to be with us as we walk this new path God has laid out for us.  We have several people in our church who were already familiar with this condition, having relatives who also have PWS - amazing for a small church and a relatively rare disease!  We have also met several parents of other children with PWS through social media and the PWS Association.  This has allowed us to ask questions and receive support from other people who understand the challenges we face.  Unlike some other genetic conditions, PWS looks different for everyone.  There are three different types, based on what is happening on their 15th chromosome.  The “signs and symptoms” also always vary in type and severity.  However, there are enough commonalities that they can offer support and advice.  We have great doctors who, though relatively unfamiliar with the diagnosis, are willing to research and help in whatever way they can.  We have also been connected to a PWS specialist that can provide much more insight and specific treatment and help for Enoch’s unique situation.  I am especially thankful that the Lord has helped my husband and me to grow closer together through these trials.  We wept together, rejoiced together, encouraged one another, shared research findings, sat through doctors’ rounds and meetings with specialists, missed our other children, and joked about our late-night “dates” to the hospital cafeteria.  I am thankful that our marriage was strengthened as we learned to lean on each other and trust one another in a whole new way.  

I continue to be a work in progress.  There are some days I am optimistic, confident, and ready to take on whatever may come.  There are other days that I am pessimistic, worried, and ready to give up.  There are days when I start with confidence only to be faced with setbacks and defeat.  There are days that I start unsure of what will come and face progress and success.  It is also a rollercoaster dealing with all of this during that crazy, emotional, postpartum, “fourth-trimester” recovery.  Through all of the ups, downs, and unknowns, I have remained sure and confident that God is in control.  Situations like this bring to life the statements of creeds, confessions, and catechisms that may seem like mere words when we first hear them.  As is stated in the Heidelberg Catechism, question one: