A strong positive mental attitude will create more miracles than any wonder drug.
- Patricia Neal
I moved to Lansing to get my teacher's certificate in 2002 when Bruce and I found ourselves pregnant in August of that year. It was very difficult to deal with. We finally got to a point where we were excited for the new arrival. I had my 20 week ultrasound and all seemed fine to me, no one said anything to the contrary to me. Then I got a letter in the mail to get another ultrasound. Well, I was dealing with the Health Department and they screwed up things all of the time, so I thought it was another screw up, cuz I still hadn't been contacted by anyone with any news. They said I was scheduled for it because there were some things they couldn't see the first time because of the "position of the baby." The second ultrasound was better, the tech actually showed me the baby right away and explained what I was seeing. She told me they were looking for kidneys, because they hadn't found them in the first ultrasound - the first I'd heard of anything... from the ultrasound tech. Now I was a little worried. Then she got the radiologist and he couldn't see anything either. He told me my fluid was very low and they couldn't find the kidneys. He was going to send my doctor a recommendation for a Level 2 ultrasound. We weren't getting anywhere with the Health Department and luckily my doctor was one of Bruce's professors at MSU. Bruce sent him an email about our concerns and our horrible treatment. He responded with apologies and his promise things would be taken care of ASAP. We got a phone call that day setting us up for a Level 2 ultrasound with Dr. Roth at Sparrow. We couldn't see him for another 3 weeks, so I was put on bedrest until that appointment.
On December 10, 2002 I went for my Level 2 ultrasound... finally some answers!!! We were so scared for three weeks not knowing what was happening. Well, we would have to wait again!!! Dr. Roth had an emergency and couldn't go over the results with us that day. We returned the next day and found out that our baby had no kidneys. December 11, 2002 would forever be etched in my memory. I also found out that same day that my wonderful Aunt Jane was going to Hospice the next day because of her cancer. How could all of this be happening? What is the reason? Well, this started a long process of testing and wonder. We couldn't end the pregnancy because we were over the legal 24 week time. We had to prove that she wasn't going to survive so we could end the pregnancy without question if we wanted to. Dr. Roth suggested an MRI so we could prove there were no kidneys. Lili and I went in with my mother for the MRI. Lili had to be anesthetized. Dr. Roth numbed me a bit and then with the ultrasound stick a needle in and gave Lili a shot in the leg. It was wild! It hurt horribly and I felt so bad for her. She settled down and we went over for the MRI. I was in the tube for almost an hour. It was horrible and all I could think of were my angels to help us through it . My Auntie Jane had passed by this time and my Auntie Dottie, Grandmother Rowe and Uncle Jack I know were all with us. Lili kept moving and I was so worried that we would have to go through all of this again if they couldn't get the pictures they needed. Well, luckily Dottie kept her from moving around too much and we got out and went home. We got a call from Dr. Roth and needed to go talk to him. The techs saw urine in the bladder, which was actually excreted during the MRI, and they saw some kind of renal tissue on the right side. Now we didn't know what was going on.
Dr. Roth and I decided to carry to term because we couldn't prove 100% it was bilateral renal agenisis (missing both kidneys). We decided to do another test to check her lung function. It isn't a 100% accurate test, but it would give us an idea, especially if it came back positive. The test came back not so great, it didn't seem her lungs were functioning because of the lack of fluid. There was one more test we could've done, but there was a slight chance Lili could have died, so I declined the test. I also met with a Neonatal doctor and with all of the test results and the ultrasound picutres, the medical staff didn't think she would survive long after birth. She would only survive on the oxygen that she got from me right before delivery. We decided just to let nature take its course and I would carry to term.
We were going to induce so we could have a team there to deal with this kind of situation, Dr. Roth, the Neonatal team, nurses, family, etc., but Lili decided she was ready before we induced. I'm glad for that! Labor was intense and quick. Kate took us to the hospital around 4:00pm on Sunday April 6, 2003 (Bruce met us there) and Lili was delivered at 6:59pm. Neither of us were monitored and I knew what I had to do. I don't think with the intense contractions that I ever thought about what was going to happen after the birth. I just wanted to get through it and finally meet her. It was a very intense situation. A lot of our families were there to meet her and support us.
Lili came out screaming and everyone cried and we were all very confused. The Neonatal team was there and did an exam and had her on oxygen. Her lungs sounded fine! She looked beautiful! We were expecting some deformation because of the lack of fluid, but she was absolutely beautiful!!! The team finally gave her to me and I couldn't believe it! She was so tiny and so VERY loud!!! Tim Tuthill was there from Mason and performed her baptism. All of our family came in and witnessed it. It was a very wonderful moment. The emotions were running very high. We kept thinking she was going to die at any moment, but she didn't!
We were there almost 24 hours before we decided to take her home. They did ultrasounds and found some tissue, but didn't know what it was or what it's function was. Dr. Roth wasn't our doctor anymore, but still helped out. We had a doctor, I can't remember her name, but I wish I could so everyone would know to stay away from her. Here we are, expecting a dead baby, but she's alive and doing well. No one knew what was happening and she says, "Well, you can take her to U of M or you can take her home." Bruce called Dr. Kershaw at U of M and talked to him for a bit. He basically told Bruce Lili would be put on dialysis. At this point, our doctor had her coat on saying she had to pick up her son, and we needed to decide what to do cuz she had to leave. Ok! You can go pick up your son, but our daughter might die right now and we have no idea what to do! So, we did what we thought best and got Lili and our things and went home to be comfortable and loved. Hopsice came over the next day and I don't think either of us was comfortable with watching our daughter pass away. People visited and brought us things for Lili... we weren't prepared to bring a baby home! So many thanks to friends and family!!! We took Lili for labs at Dr. Eneli's office (Lili's pediatrician - we LOVE her!). They weren't too bad and Lili looked great, we didn't know what to do. We decided, with Dr. Eneli's advice, to take Lili to U of M for testing and to see what they had to say. We took her in on Friday the 11th - she was now 5 days old. It was HORRIBLE!!! They put an IV in her skull and through the course of their testing she had 2 seizures. We didn't want to live in a hospital and didn't want Lili only knowing a hospital. We were completely freaked out and decided to take Lili home where she was comfortable and we could love her. We left U of M on Sunday the 13th. Dr. Smoyer, who was on duty that week-end talked to us at length and said, "Never feel like you can't come back. You are always welcome here." Well, Monday night, Bruce wanted to talk to Dr. Smoyer, so we had him paged. It was 11:00pm and he was at home, but he called us back and talked to us for over an hour. Bruce and I were both on a phone and asking him all sorts of questions. Bruce had changed his mind. I can honestly say that I didn't. I was so difficult for me to change my mindset. I had already done some mouring through the months I was pregnant and I wasn't able to switch so quickly. Plus, I knew in my heart, that once Lili was admitted to the hospital, that is where I would be. It may sound selfish, but it was the scariest thought I had every had. Of course I didn't want her to die!!! But I also didn't want her to be sick all of the time... Quality of Life... that is what was important to me. Did God have a plan that she wasn't supposed to survive, or was it quite the opposite? I agreed with Bruce to take her in and we took her to U of M on Tuesday, April 15th 2003... she was now 9 days old. I cried that whole day. I knew my life would NEVER be the same. My job now was to stay at the hospital with my child. No one should ever be judged for thinking what I thought. Put yourself in my shoes and see how you would like your life as you knew it suddenly taken away from you in the scariest of circumstances. I was accepted to Eastern for their Master's program in Children's Drama. I was awarded a full Grad Assistantship and was going to be teaching. It may sound selfish to you, but it wasn't like I didn't want her to live. I just wanted things to be normal. I had spent 4 months of therapy and soul searching coming to the conclusion that she wasn't going to live. I planned her funeral for heaven's sake! It was difficult to turn around and feel good about putting her into the hospital without any hope of what was going to happen to her. Plus the experience we had there wasn't making want to go back. But we did. I wanted to stop at the mall and get her picture taken with the Easter Bunny on the way there. I didn't know when she was going to be able to leave the hospital again. The picture is so cute!
Well, we got to the hospital and I can't even explain the feeling I had when I walked back onto that floor. Part of me felt like people were judging because we left and now we're back. I felt strange looks and I was very scared. Dr. Smoyer came to talk to us and I felt much better about things. There was still so much we didn't know. I look back now and I remember how it felt like it was yesterday.
The testing continued. She ate like a horse! They wanted to put in her "tubes" in about 2 weeks. At this point she was getting regular blood draws and it was horrible to see her getting poked all of the time. They thought her lungs weren't developed, but as I and the whole staff on 6 Mott can tell you... she's got lungs!!! The three tubes consisted of a Broviac, for blood draws and IV medicines, a Peritoneal Dialysis Catheter, going into her abdominal cavity for dialysis, and her Gastrostamy tube (G-tube), for tube feedings. They like to keep their dialysis patients beefed up because renal patients usually don't grow like they normally would. Joan, the dietician supremo, has done a fabulous job with Lili!!! Most times when people are on dialysis, especially for long periods during the day, the patient feels hungry and doesn't eat, so that is one of the reasons for the G-tube.
I grew to HATE that G-tube! She had surgery and stayed in the PICU for a couple of nights. She was doing great, but they just wanted to watch her a bit. It was pretty scary seeing her little chest filled with tubes, but I got used to it rather quickly.
They started dialysis on May 9th, two days after my 31st birthday and two days before my 1st Mother's Day. She was connected to the machine for 24 hours a day. She couldn't leave the room. It was horrible not being able to take her out of that dark hospital room. We managed. I stayed there with Lili everynight, but about once a week my mother would come and stay so that I could go home and get some real sleep. I was usually never gone more that 24 hours and would feel guilty for leaving. The nurses told me I had to leave to keep my sanity for Lili, but it was really hard. One night while we were there, my Aunt Helen got me a ticket to an Opera, so I got to dress up and go out for the night. It was a wonderful gift! The nurses were great, so I knew Lili was in great hands, but I also knew that they couldn't stay with her every minute. They had other patients and sometimes when I would take a break and come back, Lili would be by herself crying and I would feel so horrible for leaving.
Lili's PD was going well at this point. She was filling and draining wonderfully. It was hard watching her go through everything she was going through... she was soooo tiny! I held her for many hours at a time. She was so sweet and had a great attitude. I learned a lot from her. Her dialysis was manual for a while and I would load up all of her equipment into a plastic wagon (she couldn't even sit up yet, so we had to pack her in), and her IV pole and I would take her outside or just for a trip around the hospital. I wanted her to get out of that room as much as possible. Eventually she was taken off of dialysis for 4 hours a day and that was wonderful! I would take her outside and we would lie in the grass... she loved looking at the trees!
The staff, after a month there, got me to get a room at The Ronald McDonald House across the street from the hospital. I would stay with Lili until she fell asleep, or until I was exhausted, and go over to the house and get some solid sleep. I would try to get up and back to the hospital before shift change in the morning. It wasn't an easy life. I thank God for a wonderful staff.
I thought more people would visit, but they didn't. After Lili was born everyone came by with things and called to see how things were going. That was when everyone thought she was going to die. That was also the time people decided to give us their opinions on what we should do... take Lili to U of M. Yeah, once we made the decision to take Lili to U of M the phone calls stopped. Everyone got back to their lives. I can count the visitors to the hospital on one hand. I even remember who came and how many times. I don't mean to sound like everyone's lives should've revolved around us, but these people made it quite clear that I should take Lili to U of M for treatment and they knew how upset I was about it and what my life was going to be like. This was the hardest time and that is when people disappeared. My mother was vigilant on her visits and giving me breaks. I am forever in her debt for that. I had some other family members stop by when they could, we had other tragedies before Lili's birth that my family was dealing with, too. Bruce's family came by when they could, but our friends... the ones so adamant about us taking Lili in, where no where to be found. Most of them were in Medical School and they were studying for their Board Exam. I understand that must have been very stressful, too. I was very lonely. Bruce didn't even make it there very often. No one even knew that life I was living. That was something I had to try and come to terms with. This was MY life and I had to live it alone. I thought that visiting might be too much for some people to handle. Maybe they didn't want to see Lili with tubes and the two of us living in this dark hospital room. I can understand that. But I needed support and I found out where I was to get that support. Mostly from myself, the staff, my mother, other mothers in my position, and especially Lili. She is the bravest person I know. I NEVER in my life would've imagined myself there. But I was and there wasn't anyway out of it. I am definitely a stronger person for it and I've realized that not everyone could do it. I am forever changed and forever different from my friends.
Well, things went along pretty smoothly for the rest of May. We were still having HUGE problems with her G-tube. It was leaking, they weren't feeding her, she had to get and NG-tube, which she liked to pull out. Lili had socks on her hands for almost 2 months while we tried to get that stinkin' G-tube fixed. It was pathetic, but she didn't seem to mind too much. She hated that NG-tube in her nose, I'd have pulled it out, too! She certainly was a fighter and wasn't going to give up. If she couldn't, I couldn't!
The staff was great and I became close to a few of them. They loved coming into our room because I always had fresh flowers and we had a CD player. I like to listen to music with Lili while I rocked her. We mostly listened to Norah Jones, which the staff really liked. We would also listen to a Lullaby CD that my cousin, Zac, made for Lili. It was wonderful! I tried to keep things comfortable for both of us.
So many people touched our lives while we were there, I know if I try to name them I'll forget someone. The staff was great... the nurses, doctors, volunteers, janitorial staff, playroom staff, PD people, social work... almost every person I came into contact with made it a better day. Actually, something Tara, one of our nurses, said to me one day got me through the hard times. She said, "Just remember... tomorrow is going to be a better day." After Lili pulled out her NG-tube for the 5th time and they had to put it back in while I held her and heard her screaming... I just thought, "Tomorrow is going to be a better day." I still think of that and I know I will for the rest of my life.
So we got through May and the doctors decided we could get going home soon. No one really knew when, but soon! Bruce and I had to go through dialysis training. It didn't go as smoothly as we had hoped, but it was fine. After watching the docs use the machine with Lili, I was teaching some of the nurses how to use it! Finally the day came when Lili and I had to say Good-bye to the 6 Mott staff. There were tears. Mostly happy tears to get out of the hospital, but also tears of sadness and tears of loss of security. I was taking this baby home on a machine that was going to keep her alive. Everything had to be sterile and she had medications to get all day. How was I going to do this? Luckily they told me our nursing care was all set up and we were ready to get discharged.
I had been making a couple trips home a week to clean and get ready for Lili's arrival at home. I was living with my friend, Kate, who is invaluable to me! We weren't prepared to take a baby home, so we didn't have much for a baby. While Lili was in the hospital, Bruce's family had a baby shower for us and we got quite a few things. We still had a lot to get! Baby's come with a lot of stuff, plus all of her medical supplies. Those were delivered to our house the week before. I had to go home to accept the delivery. It was around 25 big boxes. Dressings, cleaners, syringes, tubing, fluid... so much, luckily I LOVE to organize things! I got things as ready as I could. Lili was on two feeding pumps at this time. We were still working on getting her G-tube to work without leaking, so she was still using an NG-tube. On June 9th, they set us free!
I packed up Lili and took her home all by myself. It was pretty appropriate since she and I had been on the journey so much just the two of us, starting with the pregnancy. It felt great to be home! Scary... but great!!! Our house turned into a mini hospital. We sterilzed everything and everyone had to wear masks when she was hooked up and unhook. It was pretty wild for everyone to adjust, but they did it without question!
June went right along. The nursing situation was a total pain, but it settled down after a while. We got two great nurses, Cecila and Irene. They were there 6 nights a week. Saturday night was always a crap shoot. Those nursing agencies need help. For one there aren't enough nurses, for two the nurses they have are in great need and most aren't reliable. We would get a call around 10:00pm, when a nurse was supposed to be there, from the agecny checking to see if the person they asked to take that shift was there! Most of the time they weren't. We started just doing Saturday nights by ourselves - it was much easier that way. We also worked up to getting Lili's NG-tube out! That was a glorious day. Bruce and I waited for a day to make sure the G-tube wasn't leaking and then when we decided it was good, we took out her NG-tube and took the socks off of her hands. It was sooooo great!!! I cried. It was a HUGE accomplishment!
In July Lili had to get two inguinal hernias repaired. I didn't want to take her to surgery, but we had too. July 17th we went in for the night, they stopped her food and gave her IV fluids. She was never happy when she was NPO, just ask the staff! They always knew when Lili wasn't allowed to eat! She had surgery on the 18th, it went smoothly. They wanted to keep her off of dialysis for as long as possible to let her abdoman heal. We thought maybe a couple of days. Well, we did labs every other day at first. They seemed good, so we kept her off. Then the labs were every two weeks... still good. Then her labs were cut to once a month. Praise God she was (and is still in February!) off of dialysis!!! She is a miracle baby!
Lili, Bruce, and I moved to Warren in August. Bruce's Medical School took him this way. I came with Lili so we could try to be a family. We eventually lost our nursing, because Lili was off of dialysis and they didn't think her feeding tube was enough of a medical need for nursing, but that wasn't until October. We only had one reliable nurse, Sharon, three days a week. The other days were a guess whether we would have someone or not, but at that point it was just a bonus if we got one. It was awesome getting a full nights rest without having to fill Lili's food bag. Oh, well. All good things must come to an end. It was nice while it lasted!
Lili's Broviac did stop working and since she was only getting labs once a month, they decided that since she wasn't on PD either, they would take out her PD catheter and her Broviac catheter. I wasn't too happy they were taking out the Broviac, that meant she would have to get poked for blood, but it was a higher risk of infection keeping it in, so I agreed to it. The procedure was out-patient. She wasn't acting normal, although I thought it was just the pain meds and she had a fever, but they still discharged us. We got home (an hour drive) and she still wasn't getting too much better. She spiked a fever of 102, so they told us to go back to U of M's ER and they would admit her to the 6th floor. Unfortunatley that took quite some time. She was finally admitted and we stayed for just one night. She was fine the next day - she probably had a bug before the surgery that we didn't catch. Of course, being the mother I think it's my fault, but I'll get over it. Anyway, the best news... she only has ONE tube now! I only have to clean the G-tube and there isn't too much risk of any infection. The stomach can pretty much kill anything that gets in it! So, we're down to medications and feeding tube stuff. She's still on her feeding tube 24 hours a day, which isn't ideal, but we're just trying to keep her stable until transplant. Which leads me to the next topic... Kidney Transplant.
I have started my work-up for being Lili's Living Donor. So far, so good! I still have to have a couple of more tests and a spiral CT to make sure I have two fully functioning kidneys. The doctors are looking at a transplant in early summer. What a long crazy trip is has been! Once Lili has her transplant and we both heal, things will settle in to a regular schedule and she should live a near normal life. Amazing isn't it?
Lili's had her transplant! It was June 7, 2004. I donated my kidney to her and the docs said it was one of the best kidneys they've ever seen! "It kicks butt!" one said. Lili and her kidney are getting along beautifully! It was a hard surgery for me, but Lili seemed to breeze through. They also placed a Broviac for her blood draws and easy access. It will be nice for clinic so she won't have to be poked anymore! Lili was discharged in a record 6 days! She was up and about a TON faster than I was. She began walking more and is now running around! Luckily neither of us had any complications with the surgery and are both healing and happy. There will always be a fear of her rejecting her kidney, but we can only live one day at a time. Lili was in the hospital recently with strep throat and then her line was infected. She had a Gram Negative Rod infection (Pseudomosis - VERY dangerous) in her blood, but was dosed with antibiotics and we removed her Broviac (probably the source of the infection) and she is doing MUCH better. She had a febrile seizure while in the hospital - her temperature went up to 106.9! I thank God she came out of it and is back to her normal silly self. She is a MIRACLE!