We have been fortunate enough to have very good health insurance, but insurance doesn’t cover everything, and unfortunately, things like the weekly amnioinfusions are being charged to us personally at $950 a piece, a week. My wife will also likely need to go on short term disability at some point. As a small business owner, my business and income has taken a hit due to constant weekly travel to Cincinnati. Doctors have notified us that Dialysis can cost between $50,000 - $80,000 a year. On top of the large expense for Dialysis, copayments for medical expenses, gas, food, and hotels in Cincinnati are beginning to pile up. Additionally, financial responsibilities back at home that are still prevalent including monthly car payments, mortgage, my shop payments, and expenses related to our other three children.
With less time being able to work due to increased trips to Cincinnati, we have decided to reach out to this community for financial help. We have already had to pay thousands of dollars out of pocket and the financial burden is only increasing in both frequency and amount as time goes on – Feeling overwhelmed by this, we know we need a miracle. My wife and I humbly ask that if you find it in your heart to help financially, that you donate whatever you can towards helping us, and most importantly, little Israel with his hard journey ahead.
We understand that this journey will take many years, but it is a journey that we are proud to walk and just want to give our little baby all the love, help, and hope he needs in the world, so again we humbly ask you to walk this journey with us. We will be strict in using any money donated for the procedures and help for Israel and the special care required after he is born. We are committed to providing photos and videos, as updates to keep everyone informed as we go along this journey. We also ask that you keep all of us, especially Israel in your constant thoughts and prayers. We ask that you please share this and our story with everyone you know if you feel compelled to do so. We will be forever truly and genuinely grateful for any and all help provided to us and already feel convicted to help others with similar problems in the future. To read more in detail about our entire story thus far, please read below. Thank you all so much for taking the time in reading this and God bless.
Our Story Thus Far:
On February 2nd, 2018, my wife, mother, father, and I anxiously went to the hospital to have our scheduled sonogram, which was to definitively determine the sex of our baby. A few minutes into the sonogram, with smiles lighting up our faces, the nurse asked to excuse herself so that she could retrieve the doctor. I vividly remember a tangible chill creeping down my spine as the nurse left the room as our bright smiles turned to confused and concerned blank stares. The doctor came into the room, looked at the sonogram, and asked me and my wife if we would like to hear some updated news she was about to tell us in front of my parents, or if we preferred it privately. Privacy didn’t matter to us at this moment, we both quickly exclaimed “Just tell us what’s going on with our baby”. The doctor’s face was not that of joy, but more of concern. She proceeded to tell us that there was a massive, unknown cyst where the left kidney should be, there was almost no amniotic fluid around our baby, and she was very concerned that our baby might not make it... just like that, in a single, unforgettable moment, the words that poured from the doctors mouth immediately flooded the entirety of the room. The blow from this knowledge was the most surreal, immediate, gut wrenching hit I have personally ever experienced in my life, blindsiding us in a life changing way on a day that started out with so much happiness and hope. After hearing these crippling words, my wife broke down and started crying. I remember thinking to myself “You have to take care of this women, she is your priority, you can worry about yourself later” I gently grabbed her hair, softly kissed her on the forehead and said, “I love you Monica, everything is going to be ok...”
Nobody prepares you in life for how incredibly hard it is to make someone you love believe something that you yourself, at the bottom of your own heart don’t fully know or believe. I pride myself with being an integrity driven, honest man, but in that moment I just wanted to make her emotional pain stop - I said whatever I had to in order to make that happen. The doctor informed us that we would need to be transferred to Peoria’s Children’s Hospital for further testing. We left our hometown hospital after our appointment was finished and headed straight for Peoria. The drive there was completely silent, until we almost reached Peoria. I turned on a song called Here as in Heaven performed by Elevation Worship. At the end of this particular song, the lyrics “A miracle can happen now, for the spirit of the Lord is here” rang out in my car. For the first time, tears poured from my eyes, not in a sobbing way, but more of an uncontrollable leaking of emotion and fear from my eyes, completely silent, hand in hand with my wife, finally realizing and coming to terms with the severity of our baby’s situation, understanding that more than likely we would need a miracle.
Once we got to Peoria, they ran a few more tests and told us that the situation for our baby did not look good at all. They informed us that one of their big concerns was this unknown giant mass of fluid where the left kidney should be and that since there was almost no amniotic fluid around the baby, the chances that the baby could compress his umbilical cord and completely choke it off was a real possibility. This was all the news they had for us during our initial visit. We were told that they would know more in ten days at our next appointment and sent us on our way back home.
Those were the longest ten days of our lives, every morning dreading the answer when I asked Monica if she had felt the baby kick each morning, fearing for the worst. Ten days slowly crept by and we finally went back to Peoria. Doctors informed us that after yet another sonogram, the mass of fluid had grown, and there was nothing that they specifically could do. They told us that if we would like, they could contact specialists at the Children’s hospital in Cincinnati, Ohio to see what they could do. We promptly agreed. On the way home from Peoria, feeling defeated, we received a call from Cincinnati saying that they could get us in to see the specialists in a weeks’ time. So we packed our bags, reserved hotel rooms, and impatiently waited for more time to pass.
The time had finally come for us to drive 4 and half hours to Cincinnati, and we couldn’t get there fast enough. We arrived Monday, February 19th in the evening, anxiously awaiting our appointment Tuesday morning at 7:30am. On Tuesday, my mother had flown in from Arizona where her and my father were visiting my brother and his wife. The three of us met a social worker and Urologist first thing on Tuesday. We were informed that Israel’s right kidney (the one they could actually see) had some micro cysts that were apparent, and one prominent cyst on it, possibly showing evidence of damage to the right kidney. We left the hospital that day feeling worse than we had before when we still had hope that the right kidney was working.
That Wednesday, Monica had an MRI, an echocardiogram for the baby, and we had a team meeting with six other specialist and a handful of nurses. Walking into the conference room where the team meeting was being held was a little overwhelming and also eye opening to see just how dire the situation for our baby was. Seeing all those white coats in one room just waiting to talk to us personally was unnerving to say the least. The amazingly detailed staff explained to us that the MRI had shown that this mass was a urinoma, but that they didn’t fully know what the fluid was exactly yet. They informed us that the baby needs amniotic fluid around it (which our baby had close to none) for healthy lung development prior to birth. Without this development, life simply is not possible. They also informed us that there was a bladder obstruction which is what actually caused the urinoma. Doctors explained that the kidneys at the time they were functioning, got backed up because of the pressure of not being able to be released through the bladder. The blockage and backup is ultimately what caused damage to Israel’s kidneys.
The staff informed us that we had the option to do nothing, which they are obligated to say. The doctors explained that doing nothing would mean almost certain death for Israel. A second option was given, to proceed with steps to counter these problems and come up with a plan. They informed us that if we decided to move forward with this, that this would more than likely be a very hard, long road to travel. I promptly made it clear to them all that this is a child, not just any child - it’s our child. This is a human being and we are going to fight as hard as we possibly can for this little one, no matter what strains or hardships are in store for our future. The doctors looked to each other as if to all be in understanding around the room that our decision was clear. After a brief pause, one of the doctors spoke up and said that if we were planning on moving forward, the first step would be to do a procedure that involves sticking a needle into Monica’s lower abdomen to extract the fluid from the urinoma. He further explained that the procedure would involve either pulling the needle out just far enough to infuse artificial amniotic fluid, or potentially utilizing an additional needle for the amino fusion. I asked him when he could perform this thinking to myself we would have to wait another week or so, but he promptly said “I can do this for you tomorrow”. My wife and mother immediately teared up and we all sincerely and genuinely thanked the specialists numerous times before leaving the room, my wife and mother hugging most of them as we left.
Early Thursday morning, around 2:30am, I woke up, not able to sleep and opened up the Bible app on my phone. The first verse that came up was Genesis 32:22, where Jacob wrestled with God, and God renames him Israel. Since we found out we were pregnant while in Jerusalem, we had already considered naming our baby Israel, but after reading this passage on that nervous, early Thursday morning, I felt like I was wrestling with God through the current situation and like this baby was wrestling for his life. After discussing my thoughts further with Monica that morning we decided our baby’s name will be Israel.
That morning my wife and I met my mother at the hospital and went in for the procedure. I remember being nervous, especially for my wife, but we knew we were in very good, very capable hands. The doctor explained to us that with this procedure, there is a low risk of premature birth or miscarriage, but a risk just the same, so Monica signed the waiver and he started. Seeing a doctor insert an 8 inch needle into your wife is unpleasant, and I can only imagine the physical feeling that it gave her was even more so, but I held her hand as he started the procedure, all the while, keeping my eyes glued to the sonogram monitor. The doctor ended up draining 120mls from the urinoma, which is about a half cup of fluid from this little baby’s stomach. I remember seeing how much fluid he extracted and just wondering to myself “how?” I then saw from the sonogram monitor the doctor pull the needle out just enough to position the tube where it needed to go in order to infuse the artificial amniotic fluid, and started to infuse. I honestly can’t tell you the feeling that swept over me as I saw this amazing doctor breath hope and life back into our child, even now writing this, it brings tears to my eyes. We could physically see this fluid rush in on the monitor, and our little creation of God immediately respond by moving his arms and legs, feeling the fluid that started to surround him, playing in it... It is a sight that I will never forget as long as I live.
After the procedure, the doctor informed us that they would send off the fluid for testing and would have the results back in a couple weeks. He told us that we would have to return to Cincinnati weekly for these extractions and infusions, for the next month or two and that towards the end of the pregnancy, we would have to return twice a week ultimately having to relocate to Cincinnati for the rest of her pregnancy and possibly some time afterwards. We went back to the hotel so that Monica could rest before we had to travel the four and a half hours back home the next morning. I immediately started to think about the severity of how our lives were going to change and what we could do in order to adapt the very best way possible.
Since then, we have gone back to Cincinnati every week. On the third visit they received the results of the fluid from the urinoma and told us that they are abnormal, meaning that the kidneys aren’t functioning properly and Israel will more than likely need to be put on peritoneal dialysis after he is born. This also means that we will have to stay in Cincinnati for an average of six months and that baby Israel will have to be hooked up to a dialysis machine for a few years until he is eligible for a kidney transplant. Monica and I will also have to take training classes in order to understand how to do everything properly once we are able to bring him back home with us. The doctors don’t know how the lungs will develop and as of right now, they are right below the low end of normal, so there is still hope on that front.
Needless to say, this is a very stressful and overwhelming time for everyone involved, but there is no other option. I can’t not love my unborn son and refuse to do anything less than fight as hard as I can for him. Throughout this entire endeavor thus far, the one constant is Israel’s strong, beating heart, it is unwavering as is ours to do everything we can to love this child. We humbly ask that you keep us in your hearts and in your prayers, and that you share our story with everyone that you know. We will continue to have faith that ultimately, this little baby’s life is in God’s hands. We have been fortunate enough to have amazing support from friends and family and will without a doubt keep everyone that donates, prays, and who has helped in any way completely informed and updated. Thank you so much for taking the time to learn about our story, God bless you all.
- Kara Segobiano
- Kara Butler
- Tracey McPeak
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