(Photo courtesy of Ashley Costanzo Photography)
Sometimes the princess finds her prince. Sometimes the orphan finds a forever home. Sometimes the chemo works, and the cancer disappears.
But sometimes, happily ever after doesn’t happen. At least not in the way you’d hoped.
Many, many people prayed for Belle to be healed. Many prayed for a complete healing. Some people even told us that God TOLD them He would heal her by such and such date (which, by the way, neither Joey nor I believed to be backed scripturally…sorrynotsorry). Belle was born September 14th in the most peaceful and beautiful way. She was seemingly, by all measures and appearances, a perfectly healthy little baby. There was just one simple, yet profound problem. Her digestive system didn’t work…not even a little bit..not at all.
We prayed. We hoped. Other people prayed. But now she’s here and it’s officially official. God didn’t heal our precious baby.
Preparing my Heart
This past summer I spent a lot of time alone. Every day was the same. I would put my toddler down for a nap, plop my pregnant self down on our soft brown couch, snuggle under my fuzzy blue throw blanket, and lay there for two-ish hours while my son slept. I would pray, read the Bible, cry, think, sleep, or just sit and stare off into space and try to process everything that was coming. I knew a wave of obstacles and change was on the horizon, rolling our way in the very near future. School would be starting in a few weeks and I was getting a new course to teach, two new curriculums to learn, and I also needed to get my classes set up and prepped for a long term substitute.
Further, we had started the process of purchasing our first home at the end of May, about two weeks before we found out that we were going to likely have a very sick child. I knew I would have packing, moving, unpacking and decorating coming and yet, we were in limbo as we waited to close on our home, so there really wasn’t anything I could do for the house. (And after an entire summer of being off of work, of course we ended up closing on the house and moving the exact same week I started back to school. Go figure). Then of course, the main thing on my mind during those quiet days was our daughter. We were told her initial diagnosis the last day of school, June 7, and from then on, every two weeks I had ultrasounds. It seemed we would just get worse and worse news each time we went, all summer long. Oh how I came to dread those scary appointments in that dark little room. So for three months, I had all of this looming over me, and yet, there was nothing I could really do in that time, except to sit on my brown couch, with my fuzzy blue blanket, and be still, and wait.
I spent a lot of those long days with God, praying and reading His word, wondering what the heck He was doing, and why this was happening. It was in those still, quiet moments that I really felt the Lord revealed to me, through His word, that He was not going to heal our Belle. There are a couple key passages He led me to that I feel confirmed that reality to me, but I’ll save those for another post. So as people prayed, and told us God WOULD heal Belle, I would silently smile and say, “thank you,” all the while knowing deep in my heart that it probably wasn’t going to happen. Now let me pause and say I don’t believe this was a lack of faith on my part. At no point did I think God couldn’t heal Belle. To this day, I fully believe that He can, should He choose to. Rather, I thought He was making it clear to me that this was the path He had for us and as much as it sucks (Yah, it does suck. There is really no “nice” way of putting it), that He was going to walk this road with us. I think that some of my questions and His purposes were revealed to me during those long summer days (again through scripture and prayer), and other questions were (and still are) left unanswered. So now that Belle is here, and indeed, her digestive system does not work, I can honestly say, I wasn’t really surprised when the doctors sat us down and confirmed her diagnosis of MMIHS.
On September 30, at two and a half weeks old, Belle was officially diagnosed with Megacystis Microcolon Intestinal Hypoperistalsis Syndrome, otherwise known as MMIHS. MMIHS is the disease the Maternal Fetal Medicine doctors suspected and the one they described to us in horrifying detail, in that dark little ultrasound room at 29 weeks pregnant. Kudos to them for identifying it considering Belle is one of the VERY few children to ever be diagnosed in utero, and the only one any of them had ever seen in their lifetimes of practicing medicine. Don’t bother Googling it. Everything you find will be say she will be lucky to live even a short life. Praise Jesus, those outdated articles and journals (all of which I’ve read and reread many times) just aren’t the reality of what is happening with MMIH children, and especially not Children’s Hospital of Pittsburgh where there are a handful of MMIH patients from all over the globe. Over the last two months Joseph and I have met with some of the most amazing, experienced, and knowledgeable intestinal care specialists in the world, as well as countless families who have children living with this disease and whom are doing very well. We were given hope in a situation that at first we were told was hopeless.
There’s this really cool phenomenon that I never realized was even possible before Belle entered our lives. I’ve always thought a person had to eat to live, but it turns out, they don’t! Who knew? Incredibly, there is this amazing thing called Total Parenteral Nutrition(TPN) which is essentially a formula that can be pumped into a person’s veins to give them all the nutrition and calories they need to live and grow. TPN is what will keep Miss Lady Antebella alive, and she could live a long and happy life on it. Also, she will have a few surgeries that will allow her to decompress her stomach and possibly even absorb a bit of nutrition from actual food. Essentially, they can keep her alive and grow her while completely bypassing her digestive system. Amazing.
There Are Just a Few Problems
TPN comes with a few risks and complications. Belle can live a long, “normal” life. (Her amazing doctor calls it “life with accessories”). However, there are a few issues that we desperately ask for your focused, specific prayers for in order for Belle to live the longest, most fulfilling life possible. Below are the risks, and how we (and hopefully everyone reading this) can pray specifically for her.
Central Line Infections-Belle has an IV line directly to her heart to give her TPN. An infection in or around this line can be deadly for her, if not treated immediately. A fever means an automatic overnight (if not longer) stay at Children’s for us to check for and rule out line infection. (So on that note, if your child is sick with a fever, please refrain from visiting us until it passes. Your child’s ear infection won’t give Belle a central line infection, but it could mean an extended stay for us at the hospital which is a total drag.) Also, there are only 6 lines in her body that can tolerate the TPN/lipids that are keeping her alive. The more times they are infected, the more likely we will lose access to them. Please pray that God would protect her central line. I pray this for her everyday. Pray that whoever helps us with her care will take seriously every step to make sure her line stays clean and infection doesn’t enter her bloodstream.
Liver Damage- Like anyone, Belle must “eat” fat to stay alive. Unfortunately, the fats she is given cause inflammation of the liver, which, over time, causes severe liver damage and failure. Please pray that God puts a hedge of protection around her liver. I also pray for her liver everyday. Recently, some new lipids have been used that are much easier on the liver. The Pittsburgh Intestinal Care team is amazing and on the cutting edge of advancements. They are part of a study and Belle just might get a chance at the new lipid that could truly be life saving for her following a clinical trial. (It has been used in Europe with great results.)
Blood Clots– Anytime a foreign object is introduced to a body, that person becomes at risk for blood clots. Belle will have a line in her at all times which means she is at higher risk for blood clots. Blood clots can lead to loss of veins which means no access to feed her. Please pray specifically that God would protect her veins from blood clots.
There is so much room for God to work in her life with MMIHS. Yes, she has a very serious, life-threatening condition. I won’t make light of that. Yes, this is a lifelong journey for her and us. We will probably be here at Children’s until close to Christmas and that’s just the beginning. Home health care, weekly labs, frequent clinic visits, and more extended stays are likely in our future. She will probably eventually need a transplant, and likely one involving multiple organs. Yes, it is extremely overwhelming and I have to pray every day, no every minute, not to let my fear of the future debilitate me and steal the joy I’m privileged to have in being her and Jonah’s mom for this very moment. But with all of that said, it is not hopeless. This disease is not the death sentence we were first told.
Even If the Healing Doesn’t Come
God chose, for whatever reason, not to heal Anabelle of MMIHS. That doesn’t mean He isn’t good, or that He didn’t hear our prayers, or that He isn’t faithful. It means, rather, that in His infinite knowledge, He has a plan here that can only be achieved through us walking this path in faith. I’m thankful that God prepared my heart for this blow in those moments of solitude this past summer. That doesn’t make it easier to accept. She is my daughter, and as Jesus hung on the cross and cried out to His father asking if there was any other way, I too have cried out to my Father, begging Him to use someone else, not her. The Lord and I have a long history together, but we have definitely gone a few rounds on this one.
I’m not really at the point of accepting this in humble obedience, more like accepting it kicking and screaming. I’m actually pretty comparable to my toddler. He just turned two and when he gets his hands on something he shouldn’t have, he holds on for dear life. When I tell him to hand it over, he looks me straight in the eye and repeats, “Mine, mine, mine,” as he clings the object tight to his chest. Sometimes he even runs in the opposite direction and I have to chase him down. He doesn’t understand that what he has isn’t his, that it’s not best for him to have, or even that it could hurt him. All he sees is that he wants it. Eventually, Jonah surrenders the object, always sticking his hand out, but looking away from me, determined not to admit defeat.
I’m working on completely surrendering Belle over to the Lord. I’m still kind of clinging on for dear life, often repeating the words, “Mine, mine, mine” to the One who created her and who holds her life in the palm of his hand. I know in my head that He is good and faithful, and that she is His. I’m working on moving that truth to my heart. So I leave you with the song I have on repeat, just to remind myself of His goodness and faithfulness… even if the healing doesn’t come.
All our Love,