Memorial Garden

I'd seen this idea a few different times, a memorial garden. At first I was a little bummed - we live in a townhome community and we aren't able to plant our own gardens.  But then I found this giant planter that I decided would be perfect.

We waited for the weather to steady just a little bit while I planned what I wanted to plant. Then we went to Gertens. Derrick picked out some plants for some other planters we had, I picked out some Tulips - one of my favorites, some Pansies - Derrick's favorite, and some Daffodils - Gabriel's birth flower.

The first day we planted them the daffodils hadn't bloomed yet...

But today, two days later, they're starting to bloom! 

I was so excited to see his birthflower blooming!!!

These are little stones that came in a kit my mom gave me, so I just placed them sporatically around the planter.

I love his little garden, its so perfect for him.  I was thrilled to be able to plant Daffodils. I'd learned they are typically bulbs that need to be planted in the fall.  This was disappointing for me, so I was extatic when I found them ready to be planted!

Being Naive

 Nearly 20 years ago, my aunt and uncle lost a set of twin boys at 18 weeks gestation.  I was 5 o r 6 years old when this happened.  I do remember it a tiny bit, but not in detail.  Nonetheless, as I got older, pregnancy loss, infant loss, and miscarraige didn't concern me. It was never supposed to happen in our family again.  I was naive enough to think that "it wouldn't happen to me".  I never gave thought to the fact that developmental abnormalities happen, cord accidents happen, placental abruption happens amongest a million other possible tragedies.

I was possibly the most naive person on the planet when it came to pregnancy. 

Looking back, I almost think that maybe I thought pregnancy was a given - not a miracle. I never realized how much of a blessing it is to get pregnant in the first place, let alone end up with a happy healthy bouncing baby afterwards.

Then I had my first miscarraige. I was hurt and sad, somewhat shocked at the thought that it could and did happen to me. Women don't talk a whole lot about miscarraige, I think this is because unfortunately, its all too common.  I had lost a child, not one I got to know, or feel, but I lost a child. Losing that baby gave me a small amount of insight as to how fragile pregnancy truly is.  Little did I know that having that miscarraige was only the start of my journey, not the end.  Boy
was I unprepared.

I got pregnant with my daughter right after my miscarraige. During the first trimester - I worried tremendously about having another miscarraige. But after I hit the 12 weeks, I "knew" everything would be fine and I'd have a healthy baby in 6 months time - and I did. She came out happy, healthy, and beautiful.

After 10 months, I found out I was pregnant again. I was naive enough to believe that since I'd already had a healthy baby, I wouldn't have to worry about losing another one (as if having a healthy baby eliminates the possibility of something going wrong in a future pregnancy??).  I was still worried about miscarraige for the first 12 weeks, but once again found myself naive enough to believe everything would be fine from that point on. I'd passed the risky phase, I'm in the safe zone.  Once again, in 6 months time I'd have a happy healthy baby to hold. 

I was so naive that I never thought seriously about the anatomy scans. I never thought about the fact that the anatomy scan wasn't just a chance to see your baby (I knew they were looking to make sure baby had a head and two arms and two legs, but honestly, in my head, it was just another chance to see my baby).  Never again will I look forward to an anatomy scan the same way as I did before. 

At 20 weeks we went in, I was excited to see my little one and get pictures to put in the scrapbook. I was too naive to think that they might find something wrong with the tiny life growing inside me. They did, something fatally wrong - and my world turned upside down.

Then I found myself being naive again.  "Its modern day medicine, they can do something, they can fix this.  They will make my baby better and everything will be fine."  I was naive enough to think that with all the technology and medical advancements they have, they can fix anything.  I would soon find out that I was very wrong. They have no options, there is nothing they can do. I stopped being naive and snapped into reality - my new reality. 

All this time I was too naive to believe this journey could be part of my life story. I was too naive to understand my babies would come out anything less than perfect. I was too naive to understand that just because you've hit 12 weeks, this does not guarantee you a take home baby.

I never thought I'd carry a baby inside me even though I knew it wouldn't live.  I was too naive to think that it would be beneficial to do so, or that I had it in me to even try... but it was beneficial and I'm SO glad I did.

To say the least, I'm a bit less naive than I was 3 years ago when I had my first miscarraige. I have come to realize how fragile pregnancy is and how much of a phenominon it is that we come out with 2 eyes, 2 ears, 1 nose.  We have 2 hands, 2 feet, 10 fingers and 10 toes.  Do you realize how precious and amazing that is? 

It seems I used to live in my own happy little bubble where things didn't go wrong and tragedies like pthis didn't happen.  I can't believe how naive I was to life, to pregnancy, and to how it all begins.

Never in a million years did I think this would be me...

Autopsy results are in...

Just got off the phone with Dr Landers, she recieved the autopsy results today.

She said that Gabriel definitely didn't have any kidneys and the tubes that connect the kidneys to the bladder were also missing. She said they made note of the small chest, small underdeveloped bladder and some facial deformities (that I didn't notice - he was beautiful to me). They said something was different about his chin, ears and nose and also that his eyes resembled those of Down Syndrome, which is common for Potters Syndrome as well.  I will be honest, I had noticed his ears were different but I loved them. They were very low on his face and very large, and they appeared very "flat". 

The one thing in the autopsy that surprised me, the examiner found that Gabriel had excess spleens. Gabriel couldn't develop any kidneys, but he had developed more than his share of spleens!?!  He didn't get all the organs he needed but developed extra of the ones he had? Weird.

I forgot to ask if they put down an eye color on the autopsy... I'll probably just ask at my next appointment to see if they said anything about that. I want to know, its just something I've been curious about since I never got to see them.

Its nice to know that they didn't find anything concerning in the autopsy.  So now that we have all the test results back its nice to know that our risk of any future abnormalities is low. Its also very comforting to know that even if we had tried to take extreme measures to try to save him, it wouldn't have worked.

Baby Fever
Going through the greiving process after losing a baby, is like the worse case of baby  fever a person can imagine. I have a need to fill the hole in my heart, but also to fill these empty arms that are craving a baby in them. Its not to replace Gabriel, nothing could ever do that. Its just a want to fill part of a giant hole in my life.

I see babies, pregnant woman, and newborns and I can't help but get jealous and long for the gentle cries and coos of a newborn. I  wish we'd gotten to celebrate his birth, his first day, arriving home with him...

I just wish we'd gotten the chance to know Gabriel, to have him in our lives - a gentle, crying newborn... then maybe I wouldn't be experiencing such an extreme case of  "baby fever".

Chromosome Test Results are in...

Received a call this morning from Dr Landers. A report came across her desk that she thought we'd like to know about. She already got the chromosome test back for Gabriel. As it turns out, he had an extra Y chromosome that caused his kidneys to never develope. There are different types of Potters Syndrome - Bilateral Renal Agenesis (no kidneys) is Classic Potters.

This means that it isn't a gene Derrick or I are carrying, it was just "Bad Luck" (the story of my life it seems - bad luck when I got suspended from high school, bad luck when I had my back surgery, bad luck when the teachers wouldn't give me all my homework and my grade point average dropped significantly, bad luck that we bought our house at a bad time, bad luck that we bought a "lemon" for a car... the list goes on). So, this result means that our risk of it happening again is much lower. Instead of being a 1 in 4 risk, we have about 4%...

The interesting thing about this abnormality is that there are kids out there living with this extra Y chromosome... Some are reported to grow faster, some have other developmental abnormalities, and some reports of Potter's Syndrome. So having this extra Y chromosome isn't always so serious or fatal, some people can live with it forever.

Dr Landers is sending us a copy of the report. I probably won't understand anything on it, but I do intend to try to see if I can find out more about this Y chromosome that Gabriel shouldn't have had. I know I can turn to the genetic councelor we met earlier if I still don't understand any of it. She was very smart about all the genetic and chromosome stuff.

Derrick went back to work this week. Its been tough being home all day without him here. I'm hurting more now than when he was here all day for support and to keep me busy. Yesterday was especially hard, I was busy babysitting my neice and nephew most of the afternoon, but couldn't keep my mind off Gabriel and his sweet face. But I got through another day and woke up this morning to some good news. Maybe that means today will be a better day...

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'"

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...