Child of Hope
by: Jennifer Fretz
It's a horrific thing to hold your child in your arms as she takes her last breath. Before 15 months ago I would've told you it was my worst fear; I'm sure every mother's worst fear. But that's exactly what happened on March 22, 2010-a year that I'm happy to leave far behind me, but at the same time, learned more about myself, my family, and the God I serve than I ever could've imagined. It's a challenge to sum up the last 15 months into a 10 minute speech! Quite honestly I've been agonizing over it (no offense, Chris :) ) but this is my best and very honest from-the-heart go of it soooo her goes!
The words “it just doesn't look like the text book picture we would like to see” replayed over and over in my head as I sat in my doctor's office listening to him go over the findings of my 20 week ultrasound. It's never a good thing when the doctor himself calls you into his office. In fact I was already suspicious since the ultrasound had taken over and hour and the technician spent a good 45 minutes on my baby's head. I remember quietly convincing myself that surely, if anything was wrong she would've gone and gotten the doctor by now. Surely if anything was wrong she would tell me...but as I nervously sat back in the waiting room, texting my best friend to tell her it was a girl and waiting for what seemed like decades to have my usual checkup I knew something was up. My feelings would very soon be confirmed.
I couldn't believe what I was hearing! My little girl's brain did not look like it was developing correctly!?! Dr. M showed me a picture of the text book he must have been referring to earlier and compared it to the picture of my child's head and sure enough, they did not look alike. He also pointed out her cleft lip and told me that it could be coincidental but often times these things go hand in hand with an abnormal brain structure. He pretty much left it at that and sent me to a specialist that would do a better ultrasound and give us a better understanding of what this could mean.
A couple of days later my husband and I learned that our baby's cleft was very severe but more concerning was the structure of her brain. We sat in a consultation room of the specialist we were seeing and he introduced us to a term I had never heard before but would soon become very familiar with-Trisomy 13. He said that his guess was either this or Trisomy 18, both of which were “bad players” and would leave the baby not compatible with life. Most people would terminate, he said. If we chose to do the same we had about 4 to 5 weeks to make that decision. After the 24 week mark, in the state of Pennsylvania, termination is no longer an option. He encouraged us to go even further with testing and see the physicians at Children's Hospital of Philadelphia (CHOP) who would run even more tests and give us our final diagnosis.
This could not be happening to us! Hadn't we been through enough? Hadn't we just gotten back on our feet from a five year long strain of one hard time after another? In the last five years I had already been through a miscarriage, my husband losing a job that he was told he would be promoted in AND finding out the same day I was pregnant with my firstborn, my husband losing another job while having a newborn, Uprooting my whole life and selling the house I loved, the house I had started my family in and wanted to stay in forever to move out of state to a place where I had no friends and move in with my inlaws because we couldn't even support ourselves, again, while having a newborn. Honestly at that point I thought that was it for the hard times. Andy's unemployment had put a brand new spin on our relationship and had brought out new things in each of us that made surviving a daily struggle. I was sure that the answer was to relocate to where we could have the support of our families. After all we had just had a baby and what better reason to actually make the move? The Lord sold our house with no more than a phone call to friends! We knew they were looking to buy, they came and looked and they bought! We were off to PA where the job market was plentiful! Andy soon got a temp job at Johnson and Johnson and we were able to catch up on bills begin to climb out of our depression and over all just breathe a little easier! It could only go up from here, or so I thought. A few months after we had moved in with my in-laws my husband fell very sick and after a three day stay in the ICU at Lansdale hospital we were absolutely shocked to learn that he had type 1 diabetes!! While learning this answered some questions for us all we were faced with a $43,000 hospital bill and no health insurance! The Lord provided, we were able to get comfortable with our new diabetic lifestyle and I was trying my best to learn all I could to help my husband manage his disease.
Six months later, June of 09, we were able to move out on our own! I was so excited! It was like Christmas in July as I was going through boxes of my precious possessions that had been in storage for almost a year! Even though we were only in the position to rent and this house was not “ours” I was elated to have my own kitchen again, to decorate my living room and to doll up a pretty little bedroom for my little baby girl! All was going well and Andy was even moving from a temporary position with J&J to a permanent one....until about a month later. Due to the economy they no longer had work for him and he was given a two week notice of termination. Oh boy, not this again, PLEASE LORD NO!!! The blow softened a bit when very shortly after I learned that I was pregnant! Apparently we like to celebrate our pregnancies by being unemployed!! Although we hadn't planned for this child and were actually trying to wait a bit before adding another stunningly beautiful child to the world we were pumped! The Lord was looking down on us and, for whatever reason, this was the right time to bless us with another baby! Andy soon started his current job working for Comcast! No more temp positions and finally benefits and lots of opportunity! We were good and I finally felt that we were on the path to living the “American Dream”
The dream quickly shattered in mid-November as I walked out of CHOP after a twelve hour day of various tests and consultations. I was about 22 weeks along. Andy had just started his job and we knew that there would probably be many other times for him to take off work so my dad accompanied me down to the city at 5:30 am where we started a very long and very hard day. At the end of the day we sat and listened as the two doctors explained to us the findings of the tests that they had run. They used a 3D model of a human brain to show me how my baby's brain did not look and confirmed the severe cleft lip and pallet and also saw that my baby had an extra digit on the each hand and foot. Her other organs appeared to be fine but without an amniocentesis to confirm they were 95 percent sure that she did have Trisomy 13. They offered me the option of terminating the pregnancy. There was no chance that my baby would ever live a normal life or even live any significant amount of time. Most of the time they don't make it out of the first trimester and if they do they usually die in the womb soon after. My daughter had done neither so far and we were told that if she makes it to birth chances of her making it through birth or any real amount of time after were slim. We were told to expect minutes and I sat, stunned, as the best doctors in the world encouraged me to end this pregnancy and walk away. I told them that my husband and I had already discussed that no matter how bad it got we would not do that. They went on to say that it would be best for ME if I did. Why, I asked. They told me that any pregnancy is hard on a woman's body and since I had already experienced a bit of high blood pressure in my previous pregnancy chances were that would happen again. I asked if this pregnancy would affect me any differently than if the baby were healthy and the answer was no. I again told them that we would not terminate. They offered to set up an amniocentesis but, after talking with Andy later, we decided that it wasn't worth the extra stress or risk to get an amnio. We knew all we needed to know and an amnio confirming or not confirming would not change our decision. We had already decided, and there was little discussion about it, that God gave us this precious little baby. He chose us to be her parents and who were we to determine the outcome of her life? We were very realistic about the severity of the situation and, although we prayed for a miracle every day, we didn't go forward with false hopes. We went forward knowing that we would carry, care for and love her for as long as we had her and when it was time for her to go to her creator it would be because He would take her. Her days were numbered in HIS book, not ours. We soon named her Olivia Hope. I had loved the name Olivia and had wanted to use it anyway and Hope obviously had significant meaning to us at this point. The only way we were going to get through this situation was because of the Hope that we were clinging to.
The following five months of the pregnancy were filled with day to day survival. I grieved hard for the first couple of weeks. Getting out of bed was easy when I had a 1 ½ year old to take care of. Andy had to go to work and I had no choice but to resume my everyday “mom” stuff. Getting through the day without sobbing and begging God to change this was NOT easy. I must have prayed a million times a day for a miracle. After a while I had prayed so many times, the same thing over and over, that I would just lay in my bed, unable to muster up the energy to pray the same thing again, and know that the Lord knew my heart of hearts and I would imagine myself curled up in His hand and be reminded that even if I felt that He wasn't close He was carrying me.
A friend had given me a book written by a lady who had lost an infant due to a genetic deformity. Her daughter's name was Hope, ironically enough, and her devotionals gave me everything I needed to hear and be reminded of each day. The first study I did was on the book of Job. I used to cringe at the term “modern day Job”. Any time I heard anyone referred to as a “modern day Job” my first thoughts were “yeah right, like you or anyone else in the world has ever or will ever go through anything close to what Job did”. Job lost all of his livestock, servants and CHILDREN all at the same time!!! How could anyone compare themselves or anyone else to Job? My study quickly led me to a better understanding of this man of the bible. I learned that the book of Job is not about the horrible things that happened to him and the loss that he experienced. It's about how Job responded to such calamity and that was by falling on the ground and worshiping God. My modern day Job changed from a person falling on many hard times to a person that, amidst the hard times, would chose to praise, would chose to trust and hold on to hope that only comes from above. I wanted to be a modern day Job.
I soon started my blog, which most of you are familiar with, and called it Child of Hope. It started as a way for me give others medical updates and that sort of thing and turned out to be a therapeutic way for me to journal and have an outlet for my emotions. I was always encouraged to see the comments that people were leaving and to hear of all those who were reading my blog. People all over were reading and praying, some I didn't and still don't even know! News spread quickly of us and I would sit and cry sometimes of the reports that I would hear of those all over the world, LITERALLY, that were praying for us and our precious baby. God continued to show us at just the right times that his hand was in this. One particular story, and I'll try to make it short, is of the son of a family that attends my dad's church. I don't know this man's name and I don't remember the church that he goes to. My dad passed on this info to me one day: This man is a prayer warrior and when visiting with his father, who goes to my dad's church, was asked “what's on your prayer list lately?” The man went on to say that a number of things were but particularly he was praying for this girl, Jen Fretz. He had heard and he wasn't sure how, that she was pregnant and her baby was in real trouble. The man's father asked several times if he was sure of the name and he was. I don't need to go further with the story to show you that indeed people everywhere were praying for us and a lot of them didn't even know us! Here was a man who didn't even know how he had heard about us and didn't know the connection between his father or mine but the Lord was using him to lift us up! How could that not be a clear reminder to me that God was in this?
We continued to take it one day at a time and each day God gave us what we needed to get through. I had decided that I was going to handle this like I was having a baby, because I was! I wasn't going to put time and energy into setting up a nursery but I was going to be prepared with the minimal supplies I needed, because a baby WAS coming! I didn't necessarily think I would be bringing my baby home. I had been praying for months for a miracle and I would think about her being born completely healthy and I ached to see the reaction of the doctors if she was. To prove to them that there is a greater physician was something I wanted so badly to happen but I knew that no matter what, even if He chose not to heal her, He was still the greater physician and He was still good.
Olivia Hope was born on March 16, 2010, a gorgeous spring day! I still, to this day, often forget the details of that day. I had woken up sometime in the middle of the night with uncomfortable gas pains! (go ahead and laugh!!) I throughout the night did everything I could to relieve the pain and got bits of sleep here and there. At around 7:00am I had decided to call a friend to get her opinion on whether or not she thought I was in labor. You see, I was induced with Gwen and this all felt so incredibly different from what I experienced with her. Only when it really started to get uncomfortable did I think something might be up. My friend told me that she thought I was in labor so I decided to get around to packing a quick bag and going to the hospital. I grabbed a quick shower, woke up my husband who THANKFULLY was off work that day and we worked together to get a bag packed, feed Gwen and make arrangements with my mother in-law to take her so we could go. By 8:00 things were progressing quickly and I carefully made my way to the car when my water broke and I could feel things happening and moving very quickly-to spare you the details! I told Andy as I did the best I could to make my way back to the house to call 911 because there was no way we were making it to the hospital. VERY long story short and not even 20 minutes later she was born on our living room floor! 20 minutes is a pretty short amount of time but long enough for millions of thoughts to be running through my head. This couldn't be happening! This was NOT good. This baby was sick and she would need immediate medical attention! What if she died in labor right here at home?! What if I did?! Why would this be happening on top of everything else?! Not to mention the fact that I wanted an epidural! The EMT's go there just in time and she and I were rushed of to emergency medical care and we started to see, bit by bit, the puzzle pieces all coming into place.
Olivia and I were both taken to Lansdale Hospital where there is no maternity ward or NICU of any kind. Our original plan had been to have her at Grandview where they would do as much for her as they could and it was in the Lord's hands from there on. We told this to the EMT's but they were more comfortable driving us to Lansdale I guess due to distance. I was in great discomfort the whole way there due to the fact that my placenta still hadn't delivered and even more so for the fact that I didn't even know who my child was with, where she was and if she was even alive. I hadn't even seen her because as soon as she was out they literally took her and ran. I arrived at the hospital about 15 minutes after she did and was greeted by a technician who told me that she was breathing and doing “ok”! I was taken to the same room as she was but there was a curtain in separating us and I couldn't see her or see what they were doing to her. I learned soon that they were intubating her because she had aspirated during delivery and due to her already weakened condition was having trouble breathing. The doctors told us that they had called Abington to see if they could send Olivia over there for better care but Abington had already sent a Trisomy13 baby to CHOP earlier so Lansdale wanted to send her there too. We told them, again, of our birth plan but for reasons that we still don't fully know they wanted to send her to CHOP. We saw this as God's hand and agreed to have her lifted to CHOP, again, not knowing if she would even make it there alive and if I would ever see or hold my baby before the Lord took her. All we could do was trust.
Soon after she left I was rushed to Grandview where I could receive better care. My placenta still hadn't delivered and I was soon facing surgery if things didn't move along. I was quickly taken up to maternity where they did what they needed to do (sparing you many details) to deliver the placenta. By this time it was about 2:30 in the afternoon, over six hours after delivery. Andy occasionally called CHOP to check on the status of our daughter and we breathed a little easier each time as they reported back that she was stable! I was told that as long as I could walk and use the bathroom by that evening that I could be discharged since I hadn't had any drugs or stitches. My delivery, as traumatic as it was, wasn't very invasive (again, God's hand) so by 9:00 pm I was out of Grandview and on my way to the Children's Hospital where I would live for the next 6 days.
Arriving there we made our way up to the NICU. I was so nervous as I walked in, I had no clue what I was about to face. What would she look like? Would she be sick? Was she still alive? What would she be hooked up to? Could I even hold her? We both stood and cried as we laid eyes on our beautiful daughter for the first time. She was beautiful. Yes, she had a pretty severe cleft lip and the shape and size of her eyes was definitely not “normal” but she had beautiful pink skin, dark redish hair and long dark curly eyelashes just like her big sister! I right away saw similar traits, and despite her deformities, she was a Fretz!
Olivia stayed stable for the majority of her stay there. Through many consultations with doctors they were able to do things to treat her lungs and get her back to a “normal” state for her condition, something they wouldn't have been able to do at Grandview. We cherished every minute we had with her and did many precious things to capture that time. On the sixth day it was decided that it was time to take her off the ventilator and that she was doing well enough on her own to give it a try. We had to make the hard decision to not put her back on if she didn't do well. They told us that if she started to decompensate it wouldn't be due to the fact that she wasn't ready to be off the vent but because of her condition that was not fixable. We prayed and had peace that if this didn't go well it was in God's hand's and we had done everything we could. She had been in the best hospital she could possibly be at and with the best doctors. She wasn't originally supposed to be here and we were told that, because she was here, we certainly got more time with her-much more.
Olivia slowly passed over a time span of about 9 hours. We used the time to be a family of four. Our good friend and professional photographer came and did precious pictures of our family. We did canvas boards of hand prints and made sure to capture Olivia's hands and feet in 3D plaster molds. After all our friends and family left we sat together with Pastor Larry in our little corner of the NICU and I cradled my daughter in my arms as she took her last breath but even harder than that was putting her down and walking away....
But story has a happy ending! The ending is that Olivia went to heaven to be with her Father. What more could a mother ask for? Of course I want her here. Of course I was looking forward to sleepless nights with a new baby, to screaming the word “no” a million more times a day than I already do! I wanted and still want more children. I'm not going to say that everything is totally fine, and I'm totally fine because she's in a “better place” because no matter what, no matter if this was God's perfect plan, I'm a human and a mother and I want my child. But the truth is Olivia will never go through the hurts that I have, or that her sister will. She will never get sick or hurt and will never have to deal with a broken heart. Her life was short but it made a huge impact in the lives of many. I know this because you have all shared with me.
We buried her on March 27th, another beautiful spring day! Many came out to celebrate her life and not a person left not hearing the gospel that day as my dad preached a great sermon.
The days go on and I'm not going to say it's been easy. For the most part we are doing good! The Lord has given us much peace and I'm convinced it's only due to the prayer and support of all of our friends and family. We still have hard days but Andy must go to work, I must be a mom to Gwen and we have both tried our best to help Gwen understand as much as a 2 year old mind can. Gwen knows that baby “Eva” is in heaven and that we are going to go live there with her someday. Sometimes she askes if we can go today! Oh, if only! I've never looked forward to that glorious day so much...
So we keep on keepin' on! I am nervous about the future. The Lord showed me that he could carry me through my worst fear and come out the other side, but my fears have changed and I can't help but wonder sometimes how much worse it could get! I WANT to say that I hope we get a break! Our little family has been through a lot! I don't want any more pain or heartache for any of us and don't we deserve to have a break now?! The truth is though that as long as we are living for the Lord hard times will come! We were never promised that our Christian life would be easy, in fact we were told it wouldn't be and what we truly deserve is death. I WANT to say that the worst thing has happened to me, losing a child, so it should only go up from here! And of course I hope that true! But of course I have no clue where it will go from here and all we can do is take it one day at a time and trust the One who has this all under control. I can't deny his hand in the life of Olivia or the other things we have been through and I know, I have faith, that no matter what is yet to come He will be there and He is in control.
The big happy ending is this: We have Hope. No matter what comes in our lives, as children of the Lord, we were given the Hope of eternal life because of God's gift to us which was his son dying on the cross for our sins. We gave our daughter the middle name of Hope because of this and we knew that she would be a very real reminder of this to us for the rest of our lives. On mother's day I got a tattoo of this reminder-the word “hope” on my wrist. I wanted to honor my daughter and hope is pretty much the base that our family is built on. I chose my wrist because, not only did I want to see this reminder all the time but the wrist symbolizes Christ being crucified which is why we have this hope. I chose my left side because it would be easier for ME to read and it's the “heart” side. I do welcome others to notice it and ask about it and have been able to share our story with them because of it.
So we are taking it one day at a time! We still have two daughters! Olivia lives, although not here, and she's still our daughter and sister and we do everything we can to represent her in our lives. She was given to us for a short time and for reasons we have come to learn but I'm sure many more we will never know until we are face to face with her and our heavenly Father. What a day of rejoicing that will be!!!