Tuesday, December 27, 2011

Samuel's Christmas

Christmas has come and gone. It will always be “Samuel’s Christmas”. We really didn’t do much. It’s hard to celebrate anything. We read “the night before Christmas” to Samuel before bed and told him all about what Christmas is, and why we celebrate. On Christmas, we decided to go to church and, although I lost it a few times, it was worth going. Our pastor spoke on believing in God’s abilities. He told us the story of a father whose son was possessed. The man said to Jesus, “Please, help him if you can!” Jesus replied, “What do you mean, if I can? Everything is possible for one who believes.” (See Mark 9:14-29). While not your typical sermon for Christmas, it was just what we needed to hear. Our logical brains, along with all the medical information, tell us not to have hope. We feel the pain of his loss and he’s still here. Our believing hearts say God can do all things! We are torn. Do we put all our hope in an absolutely miraculous healing? (Only 1/2500 babies diagnosed with PUV in utero lives.) Or do we prepare ourselves for the worst? We have been doing both, but now realize we need to put more effort into believing God CAN heal him, if he chooses. He never promised he would, but we know he has the power. So we pray for a complete healing, but we also pray for peace and comfort. We can’t deny the facts and it would be foolish to not prepare for the worst, but we will continue to pray for healing until God make His decision known to us.

We put away all the decorations on Monday. When I found out I was pregnant, I started crocheting a blanket for him (I guess I just knew he was a boy, since I used blue and green yarn). I wanted it to be big enough for him eventually to use on his bed, so it has taken me a while to get it finished. I did so on Monday. Now, I have nothing left to do.
My emotions have been all over the place. One minute, I’m happy and singing to him, the next the bitter anger of his loss hits me over the head and I want to scream and cry. I’m doing my best to be calm for him, but sometime I just want to lose it. WHY IS THIS HAPPENING?

We got the chromosome test results back and all are normal. The doctors say PUV “just happens”. Why is it that our baby is the one it “just happened” to? I try to find peace, but the pain of losing him is overwhelming. I will never ever get my first baby. I will carry this with me until I die. I hate this!!

I guess it’s a defense mechanism, but I keep thinking, “if I just get him far enough along, they can fix him”. There is absolutely no medical reason for me to think it, it just keeps coming into my head. Then, I realize it’s not true. This keeps happening over and over. I guess I’m trying to find hope.

My dreams are plagued with scenes of death and loss and pain. I can’t seem to go one night without dreaming of some horrible thing happening to me or around me. I just want to have one night where I can fall asleep soundly. Even though I’m tired, my thoughts before sleep are only on Samuel. “Please God, heal him!” “Please God, save us from this!” “Please God, don’t let him feel any pain!” It’s my desperate attempt to save him when I really don’t have any control.

While other mommies are picking out their babies things and planning their lives together, I’m planning my baby’s funeral and trying to prepare myself for the day when I have to deliver him and hold his little lifeless body. I want to die. I try to plan out what I’m going to say to people and how I’m going to face my life without him. I don’t want to do any of that. New plan God, just take all of us instead of just him. Can you do that?

God, give me the strength to get through this! Help me to love Samuel fully and to show him what life is like during his short time here. Take away my anger and give me peace. You are in control and you can heal him. We trust that you know all things and can get us through this time. Thank you for never leaving us.

Our next appointment is January 4th. Somehow we will make it.

Tuesday, December 20, 2011

Here we go again.

Today was another ultrasound appointment. I can't begin to explain how anxious I felt last night and this morning. There really is nothing to compare it to. Every time I go in, I have to bring with me all the things I would need if I were to be induced. I have to prepare myself for delivering him and saying goodbye. It's something no one should ever have to do.But I do it. I pack my bag, I get his blanket, books and stuffed dog and I climb into the car for the 2 hour ride. What else can I do but face it?

We arrived at 1:15pm and the Doctor brought us into the exam room. "God, help me do this!" is all I could think as he lifted the scanner up to take a look. Bryan was standing by my side and the screen was turned from us. "He is still with us" is what the Doctor told us. "Would you like to hear the heartbeat?"  We did and it was a beautiful sound. We love little glimpses into his world. I immediately felt a sense of peace; we would be able to spend Christmas with our precious little guy!

The emotions of these appointments are many and complicated. There is such a wave of relief/hope/joy when we know he is still alive! But, immediately following it is a wave of sadness as we realize we still don't get to keep him. While his heart is still beating, nothing has improved. In fact, his kidneys are now not even producing. The "good" (what's the word for better than the horrible alternative??) news is that because of them no longer working, his bladder is not filling anymore and is unlikely to rupture. So I guess that's one less thing for me to worry about. His heart is still under stress and his amniotic fluid is now mostly gone. It's hard to experience a sense of hope, only to have it dashed so quickly. Sadly, the beating of his heart doesn't mean the healing of his body.

After our meeting with the Doctor, we were sent to meet with a social worker. She was very kind and encouraging. It was helpful to know that yet another person is working for us/with us.

As we left for home, we both felt calm. At least we get a little more time! We were anticipating a Christmas filled with pain and sorrow, but now we can try to make some effort for normalcy. This is the one Christmas we get to spend with Samuel on earth, and we want him to know the love and joy of the day. We will do our best to share it with him.

Thank you all for your continued support and encouragement.

Wednesday, December 14, 2011

Our first follow up

Today we met with the head nurse to go over the plan for after he is delivered. It was very hard to hear exactly what will happen after I'm induced. it can take 24-36 hours for him to be delivered. I don't know how i can make it through that!

After we met with her, we went in for an ultrasound. He is still with us (!) and so we got to see him again. He had his tiny hand set right up next to his face. He is my precious boy! The sad news is that he has almost no amniotic fluid left, his bladder is full again, and now his little heart is surrounded by fluid. It's only a matter of time now before God takes him home. Pray that God comforts him and protects him from any pain.

Thursday, December 1, 2011

I will carry you

And so it begins.

After only a few months of trying, we found out we were expecting on September 13th, 2011. I was so happy! I did not tell Bryan I was going to take the test, so, as I stood over the positive test, I quickly tried to think of ways to tell him the good news. I couldn’t wait! Bryan was in the kitchen and I called to him “Honey, can you come here please?” He met me in the dining room and I told him to sit down. He probably didn’t know what on earth was going on, since a few days before this I had experienced light bleeding and had told him we would need to try again next month (I realized later that this was implantation bleeding). When this bleeding stopped after a day and never started up again, I decided to take the test. Bryan sat down and looked up at me. I said, “I have something to show you!” and went to get the test. I handed it to him and let him process. He looked up at me with a surprised/confused/excited look. “We’re going to have a baby!” I told him. We were both SO happy! As I am a planner, I immediately began googling information about how far along I was and when the expected due date would be. I estimated myself to be due in May 2012. I also began searching through our storage room for the pregnancy book I had hidden away. The next few weeks were filled with so much excitement and happiness. (Along with some disbelief!!) We were going to be parents! We did not know what to do with ourselves. I began eating really healthily and we took walks almost every day. We decided not to make any announcements until we were a bit father along. I made an appointment with my Nurse Practitioner and was lucky enough to get in soon to see her. Bryan came with. She confirmed the pregnancy and we did all the necessary exams/labs/etc. I don’t think I’d ever been so happy! For the next few weeks, all went along with nothing really big happening. When I reached just around 6 weeks in, the morning sickness started. While it was not as bad as some of my friends have experienced, it was not very pleasant and I spent much of my time with crackers, my nausea bands and the couch. As much as I felt ill, I also was happy because every wave of sickness was a tiny little signal from my baby that he was there. When I reached 11 weeks, we had the opportunity to get a free ultrasound from a clinic in the cities. When we first saw our precious little one on the screen, I was overcome. He was so very tiny, but looked like a perfect little person! It was love at first sight! We got to see him wiggle and squirm around (he was a very active little fellow) and he even “waved” at us. Then, they we got to hear his heartbeat. Even Bryan couldn’t help it and got a bit choked up. This was his little baby! We left that appointment on cloud nine!
A few weeks later, at my monthly appointment, my Nurse Practitioner told me she wanted me to see an OBGYN for my next appointment. She told me they would do an ultrasound and, since she could not deliver, I could start interviewing Doctors to see whom I wanted as my primary care Dr. She made us an appointment for 13 weeks at the local hospital. At this appointment the following week, after meeting with the less than impressive Doctor, we went to get the ultrasound. Again, we were overjoyed to see our precious little one. Still just as active as ever, he was wiggling and bouncing all around and kicking and waving too. Then, the doctor said, “Uh, I am seeing something concerning”. She turned the screen away and took a closer look. I am fairly sure my heart stopped beating as I looked at Bryan and he took my hand. She turned the monitor back towards us and pointed to his abdomen. “See this”, she said as she pointed to a black spot on the screen. “This indicates extra fluid in his abdomen and I see two sacks instead of one”. “What does that mean” is all I could squeak out. (This was one of those moments in your life where time sort of stops and everything in your mind fades away). “I’m not sure”, was her reply. She told us she wanted us to go to imaging to get a more detailed ultrasound. Of course, they did not have any appointments until later that day, so as I stood in the lobby, surrounded by all the other happy pregnant moms, I lost it. All she said me was “I know it sounds bad, but everything else looked great!” (Oh, great, I thought. So he’s fine except for the terrible things you saw! (I did not like her)). So, weakly I wobbled out to my car and Bryan came with me. We cried together but tried to remain calm. We went home to wait the two LONG hours before our appointment. It’s amazing how your life can stand still and all things become meaningless in such a short amount of time. We started the day super excited and happy and now, only a few short hours later, felt so afraid and unsure. Not only did we have no answers to what was going on, we had absolutely no idea what to expect. The Doctor had left us feeling completely shaken and not given us any information.
Somehow, those two hours went by and we got back for our second appointment. Again, we saw our tiny little one. The ultrasound tech was so great. She pointed out good things and spoke calmly to us. She said, “I notice what the Doctor did, but I’m really not sure what it is.” There was something about her that put us at ease. (Isn’t it interesting how certain people can do so much harm (Dr.) and others can do so much good (tech) just by the way they speak and compose themselves?) She told us the specialist was going to look at the photos and get back to us later in the day. Again, we went home to wait. Later that day, the Doctor called to say (surprise, surprise) they still did not know what was happening, but they wanted us to go the Mayo Clinic in Rochester for an appointment with a fetal specialist. At the same moment, I felt both fear and relief. On one hand, the fear of not know what was going on and the fact that we were being sent to the Mayo. Something MUST be terribly wrong if we have to go straight to the specialists!, is all I could think. On the other hand, since we were going to Mayo, we would get the very best of care. They scheduled our appointment for 2 weeks out and we, once again, were left with no option but to wait.
The next two weeks were quite rough. We did not really tell many people that something might be wrong, but when we did we mostly got “I just know everything will be fine” as a response. In my heart, I wanted that outcome so much! Between waves of uncontrollable sadness and tears, we did our best to remain calm, to pray for God’s help and to be patient. Finally, it was time for our appointment, the Monday after Thanksgiving. We had spent quite a few enjoyable days with Bryan’s family over the holiday weekend, and I had done my very best to keep it together and be calm. After we arrived at our appointment, we met a very sweet nurse named Katie. She was so loving and kind. She asked us what we had been told about why we were sent there and answered our questions. Then, we went for another ultrasound. When the image came on the screen, it took my breath away. There was our sweet baby with a tummy was so large that it almost over took the screen. My heart broke. I just knew something horrible was wrong. Where there should have been our tiny baby was a huge mass of black (the nurse told us this represented fluid). It was absolutely horrible to see. They took measurements of his body and told us his abdomen was 3 times larger that the rest of his body. There are simply no words for the feeling I had at this moment. Some that come close are horror, fear, protective, terror, etc. The nurse led us back to a consultation room and we waited for the specialist. When he came in, we found him to be very humble and kind. He explained that he believed the problem was a condition called Posterior Urethral Valves (PUV). Simply put, it meant the baby was not able to release urine from his bladder into the amniotic sac, as he should. The urine was then collecting in his bladder, causing it to become engorged. This also meant that the amniotic fluid levels were lower than they should have been. As he explained, he was very loving and calm and it was obvious he was feeling badly for being the bearer of this news. He explained the severity of the condition, saying without amniotic fluid, the lungs and other vital organs are unable to develop and the baby cannot survive. He told us, “Some couples decide to terminate at this point and then try again”. We firmly said “that will never be an option for us”. Again, I find it hard to communicate the feelings I had during that conversation. Complete despair, sadness and pain. We asked what could be done. He explained how a procedure similar to an amniocentesis could be done to drain the bladder of the fluid to analyze it for further details of what was happening. He explained how this process could cause miscarriage, but the chances were low. He then explained how, if the results of the tests were good, a stint could be placed in the baby’s abdomen to allow the urine to pass into the amniotic sac, thus allowing the continuation of the pregnancy. Bryan and I were so overcome with the monumental weight of the news we simply didn’t know what to do. I have always thought that I would never do an amnio, because, to my understanding, they were only done by parents who were screening for genetic abnormalities so they could either terminate their child if sick, or prepare themselves for the possibility of raising a child with an illness. I did not want to do that because I believe all life is precious, and would never, ever, consider killing my child just because it was sick. We decided to go home and consider our options.
Needless to say, we were both complete wrecks. When you get pregnant, you plan for your new life with your baby. You begin to build a place in your heart for the tiny little life and your thoughts mostly revolve around how you are going to hold them, and rock them and love them forever. That night and the early parts of the next day were almost unbearable.
We called a few people to share our terrible news. My dad was very sad. He and my mom told us they would begin calling everyone they could to ask them to pray. I was a mess. All I could do was cry. My heart was broken because I wanted this little one so badly! I also could not stand the idea of him suffering! We did some research on the condition and found not much comforting news. Most of the couple had lost their children. However, there were some who had lived! We began to feel that we should proceed with the bladder drain, so, at the very least, our little one would have some relief. The next morning, Dr. Rose called us from Mayo. He told us the night prior, he had set down with a group of his colleagues to discuss the case. They all recommended we start treatment immediately. We agreed. We set up the appointment for the next day to have the amnio-like procedure to drain the bladder. By this time, we had been put on lots of prayer chains and most everyone we could think of to ask was praying for our precious little one. My despair was so deep at this time that it was all I could do to have faith God was with him. Thank God that in my weakness, He is strong! I wasn’t sure if he could hear my yet, but regardless, I spent my time trying to speak loving and calm things to my baby. On Wednesday, we arrived at Mayo early and I was very sad and nervous. As many of my close friends know, I HATE needles, and that day, I was going to have one of the largest ones stabbed into myself and my tiny little one. Oh the horror! Nevertheless, it was for him, so I mustered up all the courage I could find and climbed on the table. A group of specialists gathered in the room to watch the procedure, as it is very rare. Bryan sat next to me and helped me keep my focus off the (VERY LONG) needle. Dr. Rose was very comforting and steady. They used an ultrasound to guide the needle and quickly removed 19 ccs of fluid from our baby’s bladder. It was painful, as they could not use any medications to numb me. I can only pray that God kept any pain away from our baby. One of the Doctors reassured us, saying he did not pull away as the needle was inserted, so it was probably he did not feel much, if any, pain. Bryan watched the entire process (I had my head turned). He told me later it was a relief to see the baby’s tummy return to a “normal” size. Although it was a painful procedure, I felt comfort knowing he had some relief from the pressure. I prayed the entire time that God would comfort our little one.
After the procedure, we went home to rest. We thanked God that all had gone as scheduled and that our little one continued to have a strong heart rate and was still moving around actively. (He was a little fighter!) The hospital was going to test the fluid for genetic abnormalities and that would give us direction for treatment. We were also going to find out gender. The results were supposed to take 24 hours. The plan was the Doctor would call us with the results as soon as they had them. We prayed and prayed!! We didn’t get a call until later Thursday evening. The nurse called to say the initial results were inconclusive. (of course! UGH!) The second round would take between 10 days and 2 weeks. There I was, the worlds least patient person, being forced to wait, yet again. At this point, there were several “hurdles” we had to overcome in order for treatment to continue. First, if a fatal genetic abnormality was found, there would be nothing left to do. Second, if it were found that the bladder did not fill up again after the drain, it would indicate the kidneys had shut down (a side effect of the condition) and again, nothing more could be done. Thirdly, if the bladder was filled, it would again be drained and the second set of fluid would be tested to see if the kidneys were functioning as they should. If they were functioning, the stint would be placed, and the outcome would dramatically change from grim to hopeful.
On Friday, we had the second “bladder drain” scheduled. We needed to see on the ultrasound that the bladder had filled again. On the 2-hour drive to the hospital, I was sick with worry. I was praying almost constantly that God would save our baby give me peace. As I climbed back on to the ultrasound table, I could feel my heart almost beating out of my chest. “Please Lord! Let this baby be ok!” Almost immediately, we could see that the bladder had filled up again. Although that sounds like bad news, it meant the kidneys were working!! It was our first glimpse of hope! Both Bryan and I lost it right there. We sent messages to some of our friends. We were so overcome, and I’m sure exhausted from all the worry of the past week, that we could not stop laughing and shaking. Since we now had this information, the second bladder draw was necessary to see if he was a candidate for the shunt. Our Doctor was away at a conference, so another Doctor filled in to do the drain. This procedure was SO painful! The baby was moving around, so it took a while to get the needle in the right place. Finally, they called in a second Doctor (who I have named “Jack the Ripper”). At one point, he raised the needle up and plunged it in so roughly, that Bryan (who – for some unknown reason – was watching the whole thing) let out a huge gasp of horror! (Bryan is not that emotive, so it must have been as horrible to see as it felt!) They finally removed 5 ccs of fluid and sent it off for testing. They also took a moment to check to see if they could tell gender. Yep! No mistaking it, it’s a boy! (As the tech said “he’s got three legs”). It was a proud moment for Bryan. Before we left, they scheduled the stint procedure for Monday, should the results come back positively.
That procedure was so terrible; I was having flashes of it. (I decided I did not like that Doctor.)
That weekend, for the first time in a while, we felt a sense of relief and hope. We had decided we would name the baby Samuel Evan. Samuel was not a name I normally would have considered, but God laid it on my heart. In the Bible, Samuel’s mother prayed desperately for him, wanted him immensely and was given him for only a short time before she decided to give him back to God. It means “God Heard”. Evan means, “God is with us” and “little warrior”. How perfect for our precious little man!
We spent the weekend finishing our preparations of his bedroom (remember, I’m a planner. Also, since I normally love control and most of it had been taken from me, this was comforting to me to have a tiny bit returned to me) and decorating our house for Christmas. It felt nice to do things together and feel happy again. We knew it was not over, but felt that God was looking out for us and watching over our sweet baby.
The procedure to place the stint was daunting to me. Due to pregnancy, I was not able to have any anesthesia. I was beginning to feel slightly terrified of the pain by late Sunday night and early Monday. Our Doctor was going to call us Monday morning with the test results. If favorable, we would be at the hospital by 2pm for the procedure. Dr. Rose called Monday with bad news. Samuel’s results were not good at all. His electrolytes were way off. His kidneys were failing and he was no longer a candidate for the stint. Once again, the wave of despair crashed over me. Dr. Rose was very kind and explained that he would certainly do whatever we wanted, even placing the stint, but with results like this, it would only be delaying the inevitable: Our son was going to die of kidney failure due to PUV. He was very kind and patient as we asked many questions about what we could do. He was so apologetic for the news and offered any means of comfort he could. Hopelessness doesn’t begin to describe the pain I felt. We asked the Doctor what would specifically happen. He explained that in a matter of time, the amniotic sac would be empty of fluid and the umbilical cord would dry up and his heart would stop. Alternatively, the bladder would become so engorged it would rupture. He said, eventually we will simply no longer see a heart beat on the ultrasound. I have never wanted to die myself so much. There was nothing I could do to protect my baby from such a horrible death. I can’t even hold him, or touch him to comfort him.
I cried out to God, “Please Lord God, save this little one from the pain of those options! Save his life!” In my heart, I know God can do anything. In my head, I don’t believe He will. It’s a horrible place to be. In that moment, nothing in life had any meaning. It could all go away and I wouldn’t have cared. If not for my love for Bryan, and his constant concern and care for me, I would have just shut down completely. It’s amazing how angry I became so quickly. Angry with God, angry with myself (surely, I must have done something wrong for this to happen), angry with every other pregnant woman I saw (how is it that EVERY woman in Mankato was suddenly pregnant and happy??), and angry with every person who tried to comfort me with things like “I just know God will heal him”, “You can try again” or “I had a miscarriage too”. This is my child! Not something that can be replaced!!! Moreover, this is not a miscarriage! It’s my tiny precious son, dying from an illness. I didn’t just wake up one day to find I’d lost him. I have to carry him, knowing he is dying. And then, after he dies, I have to deliver him! (I’m not making light of miscarriages, I just did not want anyone to try to tell me they knew my pain.) The anger was severe. I prayed desperately at all times of the day. “God, take this away from me!” “Save my son and heal him completely”. “Don’t let me feel so angry; give me peace!!” “If he has to die, let it be quick and painless for him”. It was horrible. A few days went by and the Doctor called to check on us and set up our ultrasound appointments. The plan is that every week, I have to go and see if my son is still alive or not. I want to die. We are doing our very best to give him over to God. I want desperately to believe God will heal him, but God never promised that. He only promised never to leave us and to comfort us. We pray with all our might that He will intervene and save our son. That is all we can do. Our next appointment is Wednesday. If Samuel is gone, they will induce me and I will deliver him. We will be able to hold him but he will be gone. I guess at that point he will be whole again, in heaven. But I selfishly want to keep him. I am trying to be calm for him. I talk to him everyday, I eat good foods for him and I take my prenatal vitamins. As long as he is with me, I will be the best mom I can be. Each night, Bryan and I read him stories and pray with him. We want him to know how much he is loved; by us and by God. Our hearts are broken. Only God knows what will happen. Please continue to pray for our beloved Samuel Evan. We want him more than we can say.