Healing is a matter of time, but it is sometimes also a matter of opportunity.

I love sharing my story. It's endlessly healing. -Ben Vereen

People who have been in our situation before, have said over and over again that the hardest part of this whole experience is leaving the hospital empty handed. The recommendation is to take a bear or stuffed animal to carry out with you. When I heard this, the wheels in my head started spinning and I thought of going to Build - A - Bear. There we could put the sound of our baby's heartbeat inside a bear that we could then carry with us, snuggle with, and cherish forever.

After hearing what we were planning to do, Sara - a friend and co-worker of Derrick's, sent home a gift certificate to the Workshop. What an amazing gift. She will never know how much that meant to us...

Build - A - Bear  (Mall of America)

Today we took a trip to the Build-A-Bear Workshop at the Mall of America.  With us, we took the recording we captured of Gabriel's heartbeat via ultrasound...

First up was the duty of selecting which bear we would want... I wanted something simple, nothing extreme, just a standard bear.

Next up, I pulled the recorded heartbeat on my phone and recorded it into the sound machine so we could put it in the bear.  I was surprised at how clear the recording came out since it was fairly quiet on my phone.

Evelyn selecting the hearts for our bears

After rubbing the heart with love, prayers, wishes, and happy thoughts we put the heart inside the bear.

Then helped press the pedal while they filled it with stuffing...

Evelyn and Gabriel got matching bears from my mom, one to be with Gabriel forever and one for Evelyn to always remember....

(She liked the cotton machine)

It was important for me to have this bear, something I could keep forever with his heartbeat forever inside it to listen to whenever I feel I want to.  Every medical professional who I told I was going to do this, said they never heard of doing that before and what a great idea that is... I have encouraged all of them to share this with other parents who are going through a similar situation.   So please, feel free to share this idea, hopefully you won't ever have to.



Here is the final product... a bear that will forever carry with it a bit of Gabriel's short but very special life....

25 weeks pregnant update...

Not flesh of my flesh Nor bone of my bone, But still miraculously my own. Never forget for a single minute: you didn’t grow under my heart, but in it.

   -Fleur Conkling Heyliger

As the hours, days and weeks tick by, and we pass 25 weeks pregnant with Gabriel, the rollercoaster ride of emotions continues. Some days are better than others. Unfortunetly along with the greiving process, and a part of it, is preparing for his arrival.

Birth Plan Appointment
On Tuesday 9-20-11, me and our Doula Marnie went to talk to a woman who runs a support group and also helps women think about birth plans and options. We met at United hospital and sat in their resource center to chat. I got a lot of great ideas and input from her on things we can do leading up to the birth, during the birth and after the birth. Marnie took the information and is going to get together with Derrick and I to go over the options and thoughts in order to put together our birthplan of what we want. This was an important meeting because writing a birth plan in our situation is not easy to do, but is very important. It's going to make a world of difference for everyone at the hospital to know what we want to happen, as well as what we need emotionally to happen during this process.

A kink in our chain of thinking
After the awesome appointment on Tuesday I came home that night and was surfing the internet for support, information and anything I could find useful to me. I got onto a website my stepdad suggested that is www.potterssyndrome.org. There is a lot of useful information on that website as well as a forum for people who are going through exactly what we are going through.

While reading through the various posts, I found one that was from a mom who had our same diagnosis and decided to carry to full term. During one of her routine ultrasounds at 32 weeks, they found 2 working but underdeveloped kidneys, plenty of fluid, and some lung development. Right away I closed my computer and had to process for a little bit. This has been my fear, the fear of always thinking "what if we'd waited a few more weeks?" "What if this baby is a miracle baby and something changes?" I would hate to live the rest of my life saying "what if....".  So after processing in my mind that I probably just read the only story on the entire internet of a positive outcome of this diagnosis, I emailed the original poster to find out more information. They were more than happy to be in contact with me.  They said that all the specialists and doctors they have brought the results to said this is impossible and not happening. You can't sprout kidney's from nothing... this is in fact a "medical miracle". They have no explanation of how that could possibly happen, because it hasn't happened before.  Their baby was born a week ago, is in intensive care recieving fluids until its kidneys develop further, but is expected to live.

This story has made us rethink our situation. Now we feel like in order to avoid living in the "what ifs" we have to give this baby every hope, and every chance we can. We have to give it a few more weeks than we were planning to be sure nothing is going to change. Now, instead of having a zero chance of a positive outcome, we have a 0 chance + 1 in a million that something, anything could change. So we are going to give this baby a little more time, at least a few more weeks than we were planning, just to see, just to get beyond living in the "what if" forever.

25 weeks and 3 days ultrasound

Friday 9-23-11 we went to the Minnesota Perinatal clinic at United Hospital. They scheduled us for a followup ultrasound including growth measurements.  They couldn't find any kidneys still (which wasn't a surprise to us) but baby was kicking and moving and had a good strong heartbeat - which I recorded on my phone. The woman doing our ultrasound shared the story of the loss of her baby 15 years ago and was able to offer some support and advice to us while we are going through this situation. She was more than willing to allow me to record the sound of the heart beating and printed us a lot of pictures to take home. They still weren't able to see clearly enough to confirm the gender, so we are still carefully assuming it's a boy for now. The only change they did see is that the baby, somehow, managed to find a small drop of fluid and swallowed it, so now they were able to find a stomach. This doesn't change the prognosis at all, even though it made my heart skip a beat for a small moment, it doesn't really mean much. Overall, we left the appointment in high spirits - all things considered. We didn't receive any news that anything worse was happening to our little one - he is still growing, although at a slower rate (which would be normal considering no fluid and cramped living quarters) but is weighing in at 1lb 6oz and a week behind schedule. Dr Mills wants me to continue regular OB appointments as normal until this baby is delivered. This is to ensure that I am still healthy, baby is still surviving, and there is still no risk to me (if something were to take a turn for the worst.) As of right now, there is no concern for my medical well-being, just the risk of baby not making it until we decide to deliver.

I still feel at peace with our situation most days. Most of the time I feel strong emotionally and just enjoy each day as it comes. I feel as though I've been working through the mourning process a little at a time, which I hope will make Gabriel's birthday just a little bit more peaceful instead of a chaotic- emotional wreckingball of a day. I hope for his day to be one of peaceful thoughts, loving feelings and celebration of a tiny life that never got to live and experience the world.

More Appointments...

As we quickly approach 24 weeks, we are beginning to feel like an end to this chapter in our lives is near. Although we realize it will be a part of us forever, we are preparing to say goodbye and begin the rest of our lives.

My doula, Marnie, is amazing. She was amazing when Evelyn was born, and she continues to be amazing even during this time in our lives. She got in touch with a lady who runs a pregnancy loss support group, we considered trying to get into the group before we deliver Gabriel for "pre-support" so to speak, but there is concern about the effect that might have on the other ladies in the group - which is totally understandable. But, she is wanting to sit down and talk about a birth plan with us. Make sure we have all our options and information so we know what we can ask to happen. I've thought about a birth plan, but Evelyn's was so much easier and more exciting to write. It seems that with this one, I don't know where to start, I can't focus on it long enough to try to figure it out. So next Tuesday Marnie and I are going to meet with her at United Hospital to talk about those things. Derrick won't be able to go because he has to work, but I figure I can just bring all the information home for us to go over together.

I also got in touch with Maggie the Genetic Counselor we met with (who has also been an amazing resourse for us). We asked her to help us get a second opinion via ultrasound. The clinic had no problem setting that up for us. I just explained that we aren't comfortable moving forward with an induction when we've only gotten one look and they totally understood. The new doctor said that with the amount of time that has passed since our last ultrasound its totally acceptable to do another one for us anyways, so we are just waiting to set the appointment for the second look.

We've also decided that we will have Gabriel burried in the cemetary close to our house. It will be convenient for us to get there whenever we want, especially since its within walking distance for Derrick. We think that its in our best interest to make it most convenient for us for the near future. The baby section of the cemetary is "Garden of Angels" and is very nice. I can drive down highway 94 and almost see the cemetary, giving me the opportunity to think of Gabriel everytime I do so.

Little by little we are getting ready to say our goodbyes. We feel like dragging this on longer is only delaying the inevitable... We are blessed to have the opportunity to prepare in advance and for that we are so grateful,but in some ways we feel like we don't want this dragging on forever.  I do feel like I'm being given all the resources to be as informed as possible by the amazing support group I have helping me. It helps make the process a little easier to have all the information and research available to me by those around me, and to have them so willing to help get that information to us.

Honestly, my biggest fear right now is the induction process. It can take up to 20 hours for pitocin to start to work (after that it only will be about 2 hours till Gabriel is born). But sitting in the hospital, waiting that 20 hours (possibly), knowing what we are doing... thats the part I'm dreading the most. Even saying our final goodbyes doesn't seem as bad as that anticipation. Although I know I will have Derrick, Marnie and probably other loved ones there with me, it seems like the worst 20 hours of my life is in the darkness just waiting for me. How do I get over the fear of that time? I'm not really sure at this point. I guess I'm just hoping it will just come to me somehow.

2 weeks have passed...

Its been 2 weeks since we received our heartbreaking diagnosis that has bottomed out our world. In that 2 weeks we've recieved incredible amounts of information.  We are taking some time to process all the material we've inherited, its too much to think about all at once, so we are dealing with one thing at a time, just a little bit at a time. We have not picked a birthdate for our little one, we are waiting till we feel we are ready to let go and say good-bye. When we feel that time is right, we will let everyone know that we will be meeting our little angel. Right now we just aren't ready yet... we don't know if it'll be a matter of days, 2 weeks, 4 weeks or 12 weeks.  We will know when the time comes, we have all your love and support to turn to.


This couple of weeks has been the longest most emotional weeks we've ever endured. Some days I feel totally at peace with what's happening to our tiny angel, while other days I feel overwhelmed with greif and sadness.  There are some days I feel like an empty shell, unable to feel or process any type of emotion, while others I sit and enjoy feeling the little baby move and kick around inside me as if nothing is wrong. I have had a few days where I have no motivation to even crawl out of bed, let alone start my day, but somehow manage to get up and stare at my beautiful little girls face and know that I'm blessed in so many ways. I'm learning to accept each day's mental state and handle my day according to what I'm thinking and feeling, many times it changes throughout the day so my day's plans change too.

During the last 2 weeks we've also received unimaginable amounts of love and support from family, friends, co-workers and even strangers on the internet. The amounts of sympathy, encouragment and prayers are overwhelming in many ways.  We've received cards, phone calls, text messages, emails, letters, facebook comments and private messages that have all been so comforting. Its nice to know that people are worried about us, thinking about us, and wondering how we are doing. I just want everyone to know that sometimes I just don't have the words to write back. Sometimes when I'm feeling emotional and overwhelmed, just reading someone's kind words and knowing that we have their thoughts and prayers, is enough to get me through. I promise I'm not ignoring you, sometimes I just don't have it in me to respond.

We both returned to work in the last week, trying to get back into a normal routine - at least for now - until we've figured exactly what our plan is.  Derrick was nervous about all the customers he'd see that would ask questions about our new baby, not knowing what horrific thing we are going through... As it turned out, rumors spread quickly while he was out and he didn't get nearly the questions he thought he would. In fact, most people either didn't say anything or had incredibly supportive words for him. I had the same experience last weekend, my supervisors were so sympathetic to me and understanding. The first thing they did was give me a hug, tell me to let them know if I need anything and then allowed me to go about my day without having to talk about it every 5 minutes. It definitely made it easier to get back to comfortable at work.

We also have some news to share. We have picked a name. These are not names that we would have picked in a normal situation, but given our circumstances we wanted to find a name that fits. We are still cautiously assuming this baby is  a boy because we've both thought that way from the beginning and given the statistics of Bilateral Renal Agenesis, its most likely a boy anyway. So we have chosen Gabriel Ray.  Gabriel was suggested to me by my Doula. She explained that Gabriel is an angel who is mentioned many times in the bible. The official definition of the name Gabriel is "God's Strength". Both of these are so fitting for us it just seems perfect. We chose Ray as the middle name because that is my late grandfather's name. The thought of my grandfather playing with and holding our sweet little angel has brought me so much comfort through the last weeks, that it felt fitting to name this baby after him.  When the baby is born, we may chose to switch the names to Ray Gabriel, but in the meantime we are referring to it as Gabriel.  OUR meaning of the name is Gabriel (Angel) Ray (grandpa)... so it becomes "an angel for grandpa". If Gabriel Surprises us and comes out a girl, we will change it at that time to Gabrielle Rae.

Its extremely tough to be deciding on a name for your baby, and in the next moment talk about a memorial service and burial. How does a person get through those kinds of moments? How does a person deal with the overwhelming emotions that go along with both those things, and still manage to keep themselves semi-composed? Somehow we've managed to find strength in eachother and do just that... I'm not sure how, but we're doing it.

Please continue to pray for our strength during this time, for us to have comfort, peace and love while getting through this. And also for us to find strength, love and support in eachother as our relationship continues to change through every mountain we have and will have to climb.

The tough information and tough decisions that lie ahead...

When we first got our diagnosis, I hopped online and found a spectacular woman's blog whose son was diagnosed with the same condition. I spent much of the day reading her blog and getting to know her, I found that she was an inspirational, faithful person who had more strength than I could ever imagine. She carried her son to full term.  I emailed her after reading her blog and have been in communication ever since. Here's the link to the blog. She gives a lot of hope strength and courage throughout her story.
http://lassoingthemoon.blogspot.com/search?updated-min=2009-01-01T00%3A00%3A00-06%3A00&updated-max=2010-01-01T00%3A00%3A00-06%3A00&max-results=34

I received a call yesterday from Dr Lander's, our regular Dr. She wanted to let me know that if we chose to, we can deliver at Woodwinds and that she would be happy to be there. She is the Dr who delivered Evelyn so this little act of kindness brought us a little more strength through this process. She got me in contact with an outreach nurse named Sheila who also works at Woodwinds and works with pregnancy loss. I talked to her for quite some time last night. She was able to answer questions, give us some comfort, and was especially sweet. She explained to us what things to expect when we chose to deliver. She said that they would find us a more private room away from all the new parents and their babies.  I expressed my concern about pitocin delivery because I can't have an epidural and apparently they have some options without amesia side effects to help with that. She said that Woodwinds is prepared with clay for foot and hand prints, as well as ink hand and footprints - as many as we want. They have little buntings to put the baby in that are handmade and donated to the hospital as well as blankets and little hats.She explained that we would be allowed to keep baby in our room as long or as short as we feel comfortable with and that she has a connection with the "Now I lay me down to sleep" photographers and she would be willing to make those calls for us. We will be in the hospital either overnight or two nights depending on how I'm feeling and what we want. She wanted to also let us know that a local church has a cemetary specifically for infants and preemies and it is free of charge except for the cradle (casket) which would be about $75. They also have connections to a funeral home that will take care of transportation of the baby and preparing the baby free of charge. The only other cost would be for a head/footstone which runs about $250 there. Woodwinds will cover the cost of the autopsy and MN Care will cover the cost of further chromosomal testing to see what our risks are for the future. Finances were a huge concern for us, lord knows we don't have a lot of money, so as hard as it was to talk about it also helped ease our minds about some things too. Both her and Dr Landers were very sympathetic and understanding about the fact that we are struggling with deciding when we will know the time is right, and both said that when we know all we have to do is give them a call, whether thats 2 weeks, 6 weeks or 10 weeks from now just to let them know. I got home/cell numbers for both of them incase there is anything we need or an update on any decisions we've made.

We hope we will get a message from above, letting us know when its ok to let go, telling us what the best decision is going to be for us. In the meantime, we are going down to my Aunt and Uncle's house. About 20 years ago, they lost twin boys at 18 weeks (or so) and I feel that talking to my aunt is going to help me understand what to expect and what is in store for us in the near future.  I'm hoping Derrick will also get some comfort tonight from my  uncle and knowing that they understand exactly what we are going through.

There has been an outpouring of love and support from everyone in all aspects of our lives. It is so comforting to know we have so many friends and family around us that love and support us through all of this. Its an amazing gift to have such a strong support system to help guide us during such a difficult time.



On a positive note:
Evelyn continues to be the light of our lives every single day. She always amazes us with everything she does. She's getting so big now its hard to believe she was once a little tyke. We aren't sure how we ended up with such a smart, loving, sweet little girl but we're thankful everyday that we did. I am eternally grateful for her presense in our lives.  She says so many words now: Hi, Hi Daddy, cat, dog, mama,  thank you, and pretty much anything you say after you say it. It isn't always clear, but we always know what she's trying to say. She is such a good eater, the only thing she won't eat is yogurt and oatmeal... otherwise she'll eat everything else.

"An angel in the book of life wrote in my babies birthday, when she closed the book she said 'too beautiful for earth'"

Genetic Counselors and Perinatal Physicians...

Had an appointment this morning with the Genetic Counselor and the Perinatal Physician we saw on Friday.  Although it was a tough appointment, it brought to light some interesting information and some tough choices and decisions.

First we met with the Genetic Councelor, Maggie. She was a total sweetheart and made sure we understood what it is that is going on and  why this is all happening. She sort of let us know how the process works with the chromosomes and biological aspects. She assured us that when the time comes we would be surrounded by drs and nurses who are well trained in this type of situation. She will be the one who we deal with mostly as far as putting things in motion. She says that she believes its not a genetic issue for us, its just one of those times when we got struck by lightening. But there are a lot of tests they will be doing after the baby is born to determine our risks for the future as well as any cause they can find. She finished up by telling us that, there will be 2 days that are going to feel like the worst days of our lives, the first one being the day the told us something was wrong and that it was terminal, that one we've been through. The next one will be the day everything is put into motion and we get to meet our little angel... After that, we have to let the greiving process take place and take it day by day.

We talked to the perinatologist, Dr Ney, after the counselor was finished. She said that as she was looking further and further into the ultrasound results she was seeing more and more things wrong as a result of the kidneys missing. Without water the stomach has also not really formed and same thing with the bladder, without being used and trained to work its not forming properly. It seems the list is getting longer and longer of things that are going wrong.  We talked about the possibility of carrying to full term.  First she said there is a 60-70% chance that the baby could die in utero before birth. In ways I think this would be easier as this would be eliminating our decision to terminate and when. We are considering the option of letting mother nature take its course for a while and see if it will be taken out of our hands. But we would have to give it a time limit if we chose to do this, we wouldn't want to wait months and months to see if mother nature will take over. It would have less effect on Evelyn if we didn't go to full term. Derrick is a bit more concerned for my emotional well being saying that the longer we hold this out the harder its going to be. The only benefit to making a decision to induce, is for the hope of having some pictures before the baby passes on... as well as the opportunity to hold and love the baby for whatever time we can. We are still up in the air on this, I don't intend to make a decision for a little while. It can't be a decision that I just jump to, I have to feel it whole heartedly, I have to feel that it really is the right thing to do.

Dr Ney is going to check with our dr and see if there is any chance of Woodwinds allowing us to deliver there and if Dr Landers could deliver the baby. We aren't sure about Woodwinds policy on this type of situation. Dr Ney was thrilled to hear that we have a Doula who is willing to be there with us during this difficult day in our lives, she was even happier that it was someone we feel close to and not a random stranger we've never met. She suggested an induction as a D & E carries more risks. But she did explain that an induction can take some time to get started, but once it gets started it'll go very quickly. She said that baby could live up to 2 hours after birth because of the oxygen I have provided up to this point if the baby makes it through labor and delivery. We have the option of having a company called "Now I lay me down to sleep" come in and take photos for us. They are a company that volunteers in situations like this, they would then give us a disk with all the photos on it to do with what we wish. If we give this baby some time to develop just a little futher, we might be able to get some pictures to cherish and take with us forever.

My dad has looked into some information for us, taking just one more thing off our plates right now.  He was able to find some funeral/burial cost information and locations. Just one less thing we have to do right now, when we know the time is coming, we will make the necessary calls at that time and have a vague idea of what to expect.

We have decided to cherish, love and give our little one as much life as we can while it is still here with us. So we have decided to give it a name. Now we just have to decide on a name, tough decision number one for us through this process.

I have had some comfort in a thought that was brought to my attention by my mom. She said that my grandpa, who passed a few years back, will be up there waiting with open arms for this little one to join him. He will be there waiting to love and care for this baby until we get there. For whatever reason, this along with my grandpa's photo on my desk, has brought me some peace in dealing with this heartbreaking and lifechanging experience. The thought of him up there, playing with and taking care of our little one has so much power over me, then the thought moves into the other relatives I have up there who are waiting (and probably arguing over who gets to hold it first) like Auntie Pam, Aunt Florence, and all of Derrick's loved ones who have passed too. 

The more detailed results we got from the perinatologist...

As you have already heard. We did not get good results from the perinatologist on Friday. She is taking a closer look at the 2nd level ultrasounds they did and give us more information on Tuesday morning.

On the ultrasounds they could not see any kidneys in the baby, because there is no kidneys baby is not recycling amniotic fluid and without amniotic fluid the babies lungs have not developed fully. The condition of missing both kidneys is called Bilateral Renal Agenesis. I've done a little research online this weekend and the prognosis from Dr Google does not sound promising, maybe less promising than what the specialist has told us so far. The absense of one kidney (unilateral renal agenesis) is fairly common and not considered a serious problem, the absense of both kidneys is found in approximately 1 in 4500 babies and is usually a genetic defect although thats not always the case.   Most of the time, this condition effects males more than females. The condition is considered fatal. Most babies are either stillborn or die within a few hours of birth. Most of the websites I read though explained the problem as being mostly with the effects on the breathing organs like the lungs. Only 1 website gave us any positive information and it was very limited positive outlook:

"Neonates born with bilateral renal agenesis are immediately placed in the neonatal intensive care unit. The level of renal and respiratory function is immediately assessed. Evaluation is also made of any other malformations in bodily systems. Once the long-term prognosis of survival is determined, a treatment plan can be addressed. If a neonate with bilateral renal agenesis has severe respiratory distress from severe pulmonary hypoplasia, no further treatment may be the decided course of action. If lung development is sufficient to respond to treatment, mechanical ventilation can supply respiratory support. Management of renal failure involves a complex course of action taken to address all the consequent complications. Adequate nutrition with restricted sodium and fluid intake may be achieved through a nasogastric feeding tube. Medications and vitamin supplementation can be used to address electrolyte imbalances from lack of kidney function. Because the kidney is responsible for vitamin D formation, vitamin D therapy is important. Calcium carbonate is also supplemented because the kidneys are not present to regulate calcium levels in the blood." (this was the only website to offer any sort of hope that they can do anything after birth regarding the kidneys)
"Bilateral renal agenesis has a very poor prognosis. It is usually fatal in the first few days of life. The usual cause of death is respiratory failure and acute renal failure during the neonatal period. If survival progresses to early childhood, patients may have chronic lung disease or chronic renal failure. If the lungs have sufficient development, a kidney transplant is necessary for survival. After a kidney transplant, the prognosis is improved." - www.healthline.com

All other websites gave us no hope of survival telling us that all babies have died within 4 hours of being born, the general recommended action is to terminate the pregnancy upon diagnosis, meaning they would induce now and deliver the baby.

We have decided not to do anything as of right now incase there is some sort of hope. We meet with the perinatologist again Tuesday morning to ask more questions and get more information. We will be getting a second opinion from another specialist and also talking to our regular Dr when she returns from vacation. We don't know what is going to happen, we don't know what is in store for us or what we are going to do at this point other than giving this baby all the hope and prayers we have in us. We haven't given up hope yet that maybe there is something they can at least try to do to help the situation... although so far everything seems a bit hopeless for this little one. Our only real hope is that maybe they can infuse water to the baby, use steroids to build the lungs, provided that works, babis resperatory system should be ok and the only issue would be the kidneys... but this is only our uneducated outlook on what they can try to do... I don't know if they can actually do that at this point.

The hardest part is that right now baby is jumping around, kicking, and playing in there as if nothing is wrong... everything else on the baby is developmentally fine, the only issues being the kidneys and the lungs.

This has been very tough to write, and put together so it makes sense to everyone. We are trying very hard to be strong, keeping people posted and talking to people about whats going on is helping us get through. We are trying very hard not to get our hopes up that anything will change, but we have hope and faith that there is something they can at least try to do in order to semi-fix this.  Derrick is being strong for me. He's being much stronger than I am at this point. He's been more than supportive and trying to do everything he can to make this a little easier for me. Without him and Evelyn I'm not sure what emotional state I'd be in right now.

Keep the thoughts and prayers coming as they are greatly appreciated during this difficult time. Thank you for all your love and support...