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...

Baby #2 20 week ultrasound.

First off, I'd like to make note of what you've probably already noticed - the changes to my blog!  Not only has the look changed, but I've added some things to look through. I've added a things to do list, a baby item review section... but the most important addition is the poll on the left side!  Make sure to take a look and submit your guess! Feel free to browse around and make suggestions on what I can add or talk about.

Evelyn Update
Evelyn is getting so big on us! We can't hardly keep up anymore. She now has to climb on everything, she especially loves to get on our coffee table.  She's decided she hates her crib, we can't get her to sleep in it for anything, she throws an absolute fit anytime we try to put her into it. But if we put her in our bed she zonks right out. So we are going to be making her crib into a toddler bed soon and see if she does better. I didn't want to put her into a toddler bed so soon, I wanted to wait till she was near/around 2yrs old, but I think she's making her own request., trying to tell us that she feels trapped maybe?  We'll see if it works out better for us. If it doesn't work I'll be switching it right back to a crib for awhile and just continuing what we've been doing for some time now. She is trying so hard to talk, she says a few words now but our personal favorite is "hi daddy".

BABY #2

20 weeks pregnant!


We scheduled our anatomy scan (ultrasound) so it'd land exactly the day we hit 20 weeks! We did this with Evelyn too, in a way its our own little celebration "yay we're halfway!" The appointment was at Woodwinds of course, for Wednesday August 18th at 2pm.  They were having trouble seeing the baby because baby is literally folded in half, as you can see from the picture below:

Its hard to see, but babies head is on the left side, butt is on the right, and feet are above its head - we have a gymnast!

Because of babies position, they had a very hard time getting any good shots, in fact, we only got one good profile picture:



But.... babies position isn't the only reason they were having trouble getting pictures... after the ultrasound they made us sit and wait for 30 minutes while the radiologist was looking at the pictures and measurements. After awhile, he came in to talk to me (Derrick had to leave to go back to work towards the end, lucky for me Stevie was there with me).  He said that since my ultrasound at 15 weeks, my water level has dropped nearly in half. Baby doesn't have enough water... So we walked around the hospital waiting for my dr to call me... Unfortunetly a different dr called because my dr wasn't in today. She said that they are referring me to a specialist where I'll have many follow up visits and they'll be able to monitor my water levels. In the mean time I'm supposed to drink enough water that I feel like I'm drowning and hopefully that will help raise the levels a little bit. Otherwise they have options (that they didn't tell me) that may help too. Its scary to hear news that something is wrong with the pregnancy, but they did let me know that baby looks fine right now, developmentally and everything, just that somehow I'm losing water. Either its coming out and I don't know it or baby isn't excreting it back out or I'm not producing enough. So now I'm scared out of my mind, don't know what to expect except that I'll be seeing a specialist in the next 5-7 days along with peeing... a ton. So I'm scared out of my mind right now, nervous about whats going to happen, but I'll be sure to post updates as I get them...

Our Vacation Summary

July 26th - Aug 2nd

Destination: Atlanta Ga, Panama City Beach FL, Colubus GA, Charleston SC

Crew: Chuck and Jaime Chapman and their 2 kids Cheyenne and Cayden, Derrick myself and Evelyn. We met up with my mom, step dad and grandma in Columbus GA for Patrick's graduation ceremony.

We got on our first flight leaving MSP airport and flying into Omaha, it took about 45 minutes. The flight was a bit turbulant, being Derrick's first flight, he was quite nervous and was not happy about flying. Evelyn on the other hand, slept. Not through only that flight, but through the one going to Atlanta from Omaha, and the one from Atlanta to home... She had no trouble flying.

 When we got to Atlanta, we drove 4 hours south to Panama City Beach Florida. Of course the first thing we wanted to do was see the beach!  Evelyn wasn't sure about the waters, the waves were bigger than she was. But we weren't swimming right away anyways so it was ok.

 The shore was beautiful!

 The next day, after settling in, we went to St Andrew's State Park. It was a beautiful park where I was able to get many many pictures. There was a lake inside the park called Alligator Lake, and that's no joke, we saw 2 big alligators! 

 We did spend some time at the beach at St Andrew's State Park, the beach was secluded by a wall of rocks and was very calm and shallow for the kids. We were chased around by crabs and even saw a jelly fish that'd gotten stuck on the shore. The kids had fun playing in the sand and hunting for sea shells.

 Then, we made our way to the Ripley's Believe it or Not Museum in Panama City Beach. It was pretty neat seeing all the crazy things! 

 After Ripley's, we drove 3 hours north to Columbus GA.  Evelyn wasn't really interested in the outdoor saline pool, she had more fun just hanging out watching everyone else swim.

 On Friday, we went to Fort Benning - behind the National Infantry Museum - and watched my little brother graduate from Army Basic Training. What a show they put on! Patrick is in the third row of the picture below (wearing glasses).

The day after graduation, we drove to Charleston SC. My favorite place in the whole world to go, its just so beautiful.

When we got to Charleston we went to Folly Beach and then ended up swimming at Isle of Palms beach. Both were very nice beaches. The kids enjoyed playing in the warm waters.

Evelyn mostly had fun playing in the sand. She loved the beach!

 

That afternoon, we took a horse and carraige ride through downtown historic Charleston. Although it was insanely hot, it was beautiful to see all the gardens and architecture around the town.

Isle of Palms Beach, SC

 We were able to take a boat tour through the harbor on "Charleston Belle". The kids weren't to impressed, but the views on the boat were pretty.

 When we went down inside the boat the kids had more fun, down there, they were able to run and play. Luckily the boat wasn't very crowded at all so we weren't disturbing a bunch of people.

 That night, we took a Ghost and Graveyard tour. It was interesting to see some of the "haunted" places in Charleston. Charleston, being one of the most haunted places around, has many interesting ghost stories and hundreds of different tours a person can take. The kids did very well considering it was a late night tour.

I took a total of 750 pictures on our 8 day trip. I was so glad we were able to do as much as we did while we were there. Here are a few of my favorite pictures from our trip:

 

In Panama City Beach FL

St Andrew's State Park, Panama City Beach FL

The gators in Panama City Beach FL

 Our walk along the boardwalk in Columbus GA

"Rainbow Row" Charleston SC

 Our crew in the haunted alley in Charleston SC

Late night view on our flight home - stunning.