Matthew's Journey

 

It was August 18, 2008, the day before my husband's 27th birthday. What a surprise to him (and me!) when I took a pregnancy test on my lunch break at home that day and it was clearly positive. There was no anticipation of waiting 2 minutes, nevermind 30 seconds. With thoughts running wild through my head, I drove to his work with gift bag in hand and presented his early birthday present. He was absolutely thrilled! Me...not so much. I wasn't ready, but warmed up to the idea after a couple of weeks. The doctor gave me a due date of April 18th, 2009 (by ultrasound) which would make me 7 weeks already. I disagreed with the date. Going by my last menstrual period, my due date would be calculated at March 31st, my dad's birthday. We would have to wait and see if the baby came early......
Around week 15 (October 22nd 2008) I went in for an ultrasound due to some light spotting. They did not find a cause for the spotting, but they did find another problem. The ultrasound tech said it looked like a cyst in the kidneys and that the bladder was distended, but could offer no other information. There were no doctors there at that time to explain anything. The nurse told me not to worry, everything would be fine and they would get me a referral to a perinatologist for high risk pregnancies. I wanted to cry just knowing that there was a possibility of something being wrong, but held back my tears since I did not know if the problem was even a serious one.

With the little bit of information that the ultrasound tech gave me about a distended bladder and a cyst on the kidneys, I took it and ran with it. I was constantly on my computer trying to figure out what it all meant. After many hours of research over just a few days time, I came across a website called the Fetal Hope Foundation. On there, it described five different conditions that can be treated with in-utero surgery or intervention. The first term I came to know was called LUTO. It stands for Lower Urinary Tract Obstruction. I had not a clue if this is what our baby had, but it would explain the distended bladder and did have to do with the kidneys, though not a cyst. Now I would just have to wait to see the specialist to find out.

On October 28th, Josh and I had our first meeting with a perinatologist (specialist for high risk pregnancies). He seemed ok, very knowledgeable. The nurse conducted the ultrasound initially while he viewed from the other room. The Dr. came in and explained that he believed our child had a urinary tract obstruction, also called Posterior Urethral Valves, or PUV for short, as long as the baby was a boy. If the baby was a girl, the case would be slightly different. Because the baby was not in a favorable position, they were not able to positively identify the gender at that visit. The Dr.continued with the assumption that it was a boy. He explained that the obstruction caused urine to fill up in the bladder and back up into the ureters and kidneys. He showed us the large black circle on ultrasound which appeared to be the same size as the baby- it was just the bladder filled up with urine. They also found that he had bilateral clubbed feet. The feet were turned inwards from lack of room to grow. Not a big deal, he would just need special casting after birth. From my research, I already had a good bit of knowledge on the subject and he did not have to explain a whole lot. The kidneys looked very good, and there was still a lot of amniotic fluid around the baby, though it was decreased.

The Dr. gave us our options -including termination-which in his experience he said that most parents would opt to terminate their pregnancy with this discovery. That, however, was not an option for us. This was our baby and we were going to carry him no matter what. God gave him to us for a reason and I intended to follow His plan. Doc explained that there was in-utero surgery available for this condition to relieve the obstruction. Even if it was successful, studies showed that 1 in 3 children would end up needing a kidney transplant. To me, it was the right path to take. Surgery was worth the risk to save our son.

Two days later we were back at the perinatologist's office. In order to be eligible for surgery, the baby had to be atleast 16 weeks gestation (right there at this point), and have electrolyte levels within a certain range to show good kidney function.
He inserted a large needle through my belly and into the baby's bladder. He withdrew 7 syringes full of urine (what a relief to baby!). It would take atleast a few days to get the results back. If they were good, we would be scheduled to go to see the fetal surgeon.
Josh drove us home and I was miserable to say the least! Horrible cramping, dehydration, nausea....extra strenth Tylenol, and bed rest.

The results for the bladder tap came back on the high side. The amniocentesis was perfect, so we passed that requirement. To get the most accurate results, bladder taps will be performed 2-3 times for the freshest urine. I was very concerned that the results would not get better, but one of the nurses eased my mind by telling me that he first tap is stale urine which can raise the electrolyte levels.
We scheduled a second tap, which Josh was not able to be there for. Timing was not good, because Josh had to go to training three hours away for a month. I was very lucky to have my parents around for support at this time.
The following week, the doctor called to tell me that the results were even worse this time. I started crying. I asked for one more chance, not having much hope. The Dr. explained that this was the last one he would do, and that he did not expect results to improve.
The last bladder tap was the longest and most painful one yet. He had to insert the needle in several different places because the angle was bad. The results came back the following week higher than ever.

We named him Matthew- Gift from God.

I told the doctor that I wanted to see the fetal surgeon even though the levels were high. The kidneys still looked excellent on ultrasound.
I had all of my records sent to a fetal surgeon. I spoke with one of the workers there who said the Dr. needed to review the records, but that I should be able to get in that week. She would call me by the end of the day to confirm the appointment time.
I waited...and waited...she called me back at 5:30 PM. She said after reviewing the baby's records, the surgeon said there was nothing he could do. Nothing?! As she began explaining things on the phone, I couldn't hold back the tears. What did they expect me to do? Carry a child who would die after he is born? I just couldn't understand. She said the urine tests just weren't good enough, and they felt surgery would not be of help for the kidneys at this time.
I couldn't even finish talking to her. I simply said "thank you" and hung up the phone. I laid on the couch and cried.

I wasn't ready to give up.

I was at gymnastics with my children one Saturday. I started talking to another mom in my son's class and told her about the baby and our situation. We exchanged numbers to get together sometime.

Just a short while later, I got a message from her. She said she had a good friend who was a nurse in the local NICU department and wanted to talk to me. I decided it had to be a message from God to place those women in my life during that time.

I called and talked to the nurse. She urged me to go see a doctor that she used to work for at a women's hospital. She also suggested that even if Matthew's kidneys couldn't be salvaged, we could help his lungs develop by getting amnioinfususions.

You see, a baby's lungs develop in the womb by drinking the amniotic fluid around them. The fluid also gives them room to expand. The kidneys were no longer the big issue. If Matthew didn't have fluid to take in, his lungs would not develop and he would have Pulmonary Hypoplasia- small, underdeveloped lungs which can be fatal. The most important time for lung development was between 18-24 weeks. I was around 22 weeks- already into those important stages.

We decided to give it another shot. I called my regular OB and told them I would like a referral to see the new doctor and to have amnioinfusions considered. The nurse said she would send over my records, but that it would be highly unlikely for me to see that specific doctor. He was the head of the department, and she said none of her patients have seen him in over two years. I told her that was okay.

Our first appointment with the new doctor was in December. Josh was not able to go due to work obligations, so a friend volunteered to go with me.
Imagine my surprise in the exam room when the Dr. came in - and it was the one I was hoping for! A prayer answered! He explained most of what I already knew about Matthew's condition. As he did the ultrasound, things had changed a bit since we had our last one a month before. And not for the good.

The Dr. explained that Matthew had a bell shaped chest. In normal development, the chest and the abdomen should have been the same width. Matthew's chest was very small, and it got larger as it got to the abdomen. The Dr. said there was no way of knowing what would happen when Matthew comes out. From a medical standpoint, our son had no chance. However, he said he is sometimes surprised by babies who have this appearance and come out breathing on their own. We would just have to wait and see. He suggested comfort care would be the best way to go, which is making Matthew as comfortable as possible during his short life.

Matthew's kidneys no longer looked ok. One of them was large and echogenic, or bright. (Bad sign). The other was just small and fluffy looking. Not normal either. His bladder was no longer enlargened. It appeared that his kidneys had stopped functioning and that whatever urine was in his bladder just absorbed into his body. There was less than 2 cm of fluid around Matthew which explained why I was so tiny for how far along I was. He had no padding around him- it was literally all baby.

The Dr. gave me a great sense of peace that day. He laid his hand on me at the end of the appointment and said that everything would be okay. He said I was making the right decision. I felt such a strong connection with the doctor and really felt that God was speaking through him that day. There is no other way to explain how amazingly spiritual he felt to me. I did not end up asking about amnioinfusions. I felt so much peace with the idea of just letting everything happen as naturally as possible for the remainder of the pregnancy. No more testing, needles, medical intervention. Just letting Matthew be at peace and go home to be with the Lord after he was born, if He so chose. I was so strong, rarely crying, just knowing what was best. Others commented on how strong I was throughout the whole pregnancy, and I couldn't really understand it myself. But I knew it was God.

If God brings you to it, He will bring you through it.

Matthew is breech and highly unlikely to turn since he is so squished inside of me. My local OB said they likely wouldn't deliver a breech baby regularly and that in that case I would have to deliver out of town.

I asked her what the risks are associated with having a regular delivery when the baby is breech, and she said that his head can get stuck. Definitely not an option! Even though we know what Matthew's likely fate is, we would very much like to hold him and be with him while he is alive. I don't really want a c-section, but if it will spare him trauma, me trauma, and let us hold him alive, to me it seems the right way to go.

I was at work on Friday at about 5:30 when I got a much more intense contraction than the braxton hicks I had been having. I lightly practiced my breathing exercises for the duration of it. When I got home we started timing them, and they were about every ten minutes for an hour and 1/2 or so. Some were painful, some were not. I went up to the hospital, but they determined that he was not ready to come out just yet, so I was sent back home.

It felt good being back home. Being in the hospital wondering if "this is it" was extremely frightening. I started crying for the first time in a while. I knew it was coming very soon, but the good Lord had given me a little more time to soak in reality. And to go out and buy Matthew's baby blanket if I made it till the following day.

All day Saturday and into the evening I was having contractions, but too far apart to consider going to the hospital. They were again more painful than anything I had ever experienced with my other children, painful enough that I should have realized that even though they were far apart, they were much more productive than any other previous contractions. Between 5-6 in the morning, I had about 6 contractions. They were still very staggered...17 minutes, 5 minutes, 10 minutes (was told to go the hospital between 5-7 minutes)...I had also been leaking some fluid since 3 or so in the morning. I probably should have called the doc at that point. I called the Dr. at 7 AM, she didn't seem too concerned because of the timing, but said to go to the hospital to get checked out. We first had to wake the kids, pack a bag for them, take them to my in-laws and get our things together. By the time we got to the hospital it was about 8:15 AM. Contractions were only 2 minutes or so apart at that time. They checked me and I was 8 cm! Wow! We still had to wait for the Dr. and the anesthesiologist to get there. The nurse did a quick ultrasound and he was still breech, so we were definitely going for a c-section.

The anesthesiologist arrived and I was wheeled off to the surgery room. When they were ready for the procedure they brought Josh in and got started. He couldn't see anything since he was behind the sheet with me, and I'm not sure he even wanted to see. I felt when baby Matthew was lifted from me, which was pretty amazing. I heard him make a sound, but it wasn't a cry.

My birth plan specified that no intervention be taken to prolong his life, that we wanted things as natural as possible for Matthew. The neonatologist called Josh over to Matthew while they were assessing him. They talked for a few minutes, but I couldn't hear what was going on. The neonatologist then came over to me and explained that Matthew couldn't breath on his own, and he suggested that we put him on breathing support until we are able to get some time with him. I agreed that was what I wanted. They wheeled Matthew over to where I was laying. He was so beautiful! I put my hand over and touched his beautiful skin. He weighed 4 lbs 2.5 ounces, and was 15.5 inches long.

They took him down to NICU and I had to wait in recovery for an hour.

After my time was up, they wheeled me into the NICU where Matthew was. He was hooked up to a breathing machine and his lungs were working so hard, poor little guy. I just stared at him, trying to memorize every body part. His black hair was just like Abbie's when she was a baby, he had her nose too. His tummy was a little wrinkled from his bladder getting stretched out and big in the womb, but his feet were not nearly as clubbed as we had anticipated. He was perfect in every way to me.

Our family started coming in a few at a time. My mom and dad, Josh's mom, Abbie and Raleigh, my brothers, my grandma, my cousin, my dear friend Tammy, and Amanda from Now I Lay Me Down to Sleep (infant bereavement photography).

My pastor was at the church service at the time and was not able to make it quickly to baptize him, but he did stop services when he found out that Matthew was born, made an announcement at church, and said a prayer with the congregation. We had the hospital Chaplain come up.

The nurse placed Matthew in my arms for the first time while Father Bob baptized him. Then it was decision time. The neonatologist said we could either transwer him to a children's hospital for aggressive medical intervention, or it was time to say our goodbyes. As much as I wanted to keep him and hold him in my arms forever, I knew that it was his time to go. It broke my heart to see him struggling to breathe, even with the help of a breathing machine. All of my family and friends were in the room, and stayed as Matthew's breathing tube was removed. I cried for the first time at that moment. I was so sad that he had to leave, but so happy that he did not endure any suffering. He was with me for about 10 more minutes without any assistance, other than from the Lord. He even opened his eyes for a minute or two at the very end, then drifted off to a Heavenly place.

I was wheeled back to my room quickly for some pain meds. To my request, the nurse did not give me many pain meds during our time with Matthew in the NICU, because I was so afraid that I would not be alert enough. I was in a terrible amount of pain now. Every bump in the hallway made me groan. Josh stayed back with Matthew  while he was given a bath. After a while, Matthew made it back to the room where we could spend some more time with him and have Amanda, our NILMDTS photographer, take some photographs. Bless her heart, she was so wonderful and stayed with us from 9 AM until around 4 PM. The time with him afterwards was so important, yet so physically difficult since I couldn't even sit up. The kids loved holding him and did so several times. I have no regrets about their participation in their brother's life, and they handled it so very well.
I spent three days in the hospital and welcomed visitors happily. Josh stayed the nights with me and most of the days, but I loved being able to tell my story of Matthew. How he was only in my life for a short time, but made such a huge impact on who I am. Through Matthew, He changed me as a mother, a person, a wife, and a Christian. God gave me the best thing in the world, and I am forever grateful for Matthew. It had been such a bittersweet journey. Matthew was a very special baby with his beautiful life set for him in Heaven. I feel so blessed to be chosen as his mother. Of course we would have loved to have taken him home, but that was not God's plan for him. He was not to be like other babies here on Earth. He was a special angel, loaned to us for eight and a half months to show us how to love better, to show us what life really is about, to show us that we have an amazing, loving God.