Pallister- Killians Mosaic Syndrome

I keep updating this one post so it's going to be a long one. 
You probably saw on my Instagram or my sisters Facebook page that I was in the hospital yesterday, my birthday. Without getting too detailed (but you know I'm no good at that) the bleeding never really went away after I had Charlotte and while on vacation it started getting worse. Assuming it was my period I didn't do anything about it until we got home and it got a lot worse. Like, I started feeling lightheaded I was losing so much blood. I finally decided to get it checked, after hours of course, and went into the ER. Chris stayed home because Owen was sleeping. They did some blood work and needed to take a pregnancy test just in case. But due to the excessive amount of blood, a normal urine test would be tainted. So the nurse stuck a catheter in. Now, before you assume that's no big deal, let me just tell you, it's a big deal. When I had Owen I had one but I also had an epidural so it was actually quite pleasant. Getting one without an epidural is no joke. I cried.

Obviously the test came back negative, like I told them it would. So next was an ultrasound. The on-call doctor was a tired jerk. I get it, he didn't want to be there but did he think I did? He kept asking me why I came in right now of all the times to go in. Not a happy guy. After that was done and I left him with a huge bloody mess the doctor came in and said I had a Retained Product of Conception aka whoever did the c-section didn't quite clean it out all the way. 

He said I would need a D&C if this medication he gave me wouldn't work. This medication is called Methergine. It makes your uterus contract so that it will get rid of whatever is in there bleeding. He told me it would feel like labor but it would hopefully solve the problem. At first I thought "Labor? Are you kidding me? No, thanks." Then I thought, well crap if this is going to stop it, what choice to I have? So he sent me home with the drug and told me to take it and have Chris go get my Hydrocodone prescription filled, because I was going to need it. That scared me but I did. The ER doc had called Dr. Anderson and he said to call him later that day if the bleeding hadn't stopped. I got home around three a.m. and had Chris driving all over Orem and Provo to find a Pharmacy that was open 24 hours. Just so you know, it's the Walgreens right by Utah Valley hospital. 

Luckily, the Methergine didn't work at all. I had a couple small contractions but it didn't hurt. 
Finally, some mercy. 

We were both up until about five and slept until nine when Owen woke up. My sister (life saver) came and got him and we went right back to bed. We woke up around one and nothing had changed. I was still bleeding a ton so I decided to call and he said I needed a D&C. We went straight to the hospital, got all checked in and waited, surprised right? When the anesthesiologist (I didn't even have to spell check that!) came in he asked about our five week old baby. Apparently no one told him.. So I did. And then I told him it was my birthday. He asked me what would make it better and I told him I didn't want to see or remember the OR- last time was a nightmare. He said he could make that happen so when it was time for surgery, the nurse rolled me into the OR, I heard 80's rock and roll music, he told everyone it was my birthday and that I was getting the good stuff. I don't remember anything after that. Happy Birthday to me! 

Thanks to Susan for the very flattering picture.

 Okay- 
So I started this post a few weeks ago and I'm finally back from a little vacation to finish it. Remember how I said the feelings of depression and anger were coming soon? Well, they've come. 
My grieving cycle is rough- first acceptance then comes the anger and depression. 

It was nice to escape our real life, our to-do list and mostly our bills, but unfortunately we couldn't leave our emotions. 
Chris and I will have been married for a short five years next month and we decided while we were on vacation to just celebrate it there. We went to Universal Studios, Knotts Berry Farm, The Cheesecake Factory and the beach (several times). It was fun.. and hard. These are things that would normally make me ecstatic but I, (I should say we) still felt something was missing. Not just something, someone. My sweet, baby girl. Charlotte May. 

This little girl of mine is amazing. 

This time is so different, it's hard to explain. We miss her. More than miss, we long for, grieve for her. We miss Conor too, but we really miss Charlotte. I felt like I got to know her. She had a feisty little personality.  She was so active the whole time that I was blessed to carry her and I feel like we got to know her so well. Every night we'd put Owen to bed and sit on the couch feeling her move while watching Netflix.  Chris' facial expressions when he felt her were priceless. I dreamed of dealing with her personality in high school. She seemed so much like me and I was excited for the challenge. I thought for sure she would be dramatic. I would imagine her giving me all kinds of attitude when she didn't get what she wanted, in true princess fashion. In my head she was an overly dramatic little diva.

Turns out she really was.

Dr. Fung called me the other day. She was the Pediatric Neonatologist who was taking care of Charlotte when she was born. She called to tell me she got the chromosome and blood test results back. Are you ready for this?

Little miss Charlotte had Pallister-Killians Mosaic Syndrome (PKS). It's a chromosome abnormality when a there is a duplicate of the chromosome 12 that appears for no known reason. She is so special, she had not only one or two extra copies but four extra copies of the 12th chromosome. So, what does that mean? Well, to be honest, we're still trying to figure that out. Dr. Fung went on to tell me just how extremely rare this syndrome is. Remember when we thought the Diaphragmatic Hernia was rare? 1 in 4,000?

Well, Pallister-Killians Syndrome has been diagnosed less than 200 times.. worldwide.

We're talking about 1 in billions here. This doesn't happen. She, personally, has never seen this and neither have her coworkers. She said this was in a section of her textbook in medical school that the professor said they would never see. "It's just something you read about, not something you actually see". She was amazed at this, at Charlotte. The fact that she made it that far with all odds against her, was amazing. She thanked me several times for letting the University do the autopsy. She said they have gathered so much research already and they aren't done.

Pallister-Killians Syndrome is so rare there isn't a lot of research on it. After answering several of my questions, Dr. Fung continued, she said that Chris or I could be a carrier of an extra 12 chromosome, meaning, one of us passed it on to her. Before, if ever, we decide to try again we need to go through genetic counseling and get genetic testing done. Apparently, very extensive testing. If it turns out one of us is a carrier, we need to decide if it's worth the risk to try again. Because there isn't any real detailed information about this syndrome, she said, they can't even tell us if it will happen again or if this was a one time thing. It could happen to every kid we have from here on out or never happen again. She also mentioned that this could have been the reason Conor died. Talk about terrifying.
As I'm going through this post, adding and editing, I had typed "It's still sinking in". Well, like I said, it's been a few weeks now and it has officially "sunk in".

If one of us is a carrier of this syndrome it means that we could be done. At 23 years old. We've already lost two, I will not do it again. Trying again is way too risky to us. Basically, this genetic testing is our future. It could add a very devastating future to our already devastating life. As of this very second that makes me sad. That makes me more than sad it makes me cry. Coming from the girl who never wanted kids, this very possible fact makes me cry. It hurts every part of my heart, of my soul. It's taken me three years to come to terms with and learn to love motherhood and now it's being taken. I know "for a short time" and I "will see them again" and blah, blah, blah. That doesn't help.

The characteristics of PKS include:
-hypotonia (low muscle tone/ "floppiness")
-abnormal facial features (i.e. high forehead, broad nasal bridge, wide space between eyes)
-broad neck
-short limbs
-cataracts
-sparse anterior scalp hair
-abnormal hands or feet
-permanent hearing/vision loss
-high, arched palate
-epilepsy
-congenital heart defects
-Gastroesophageal reflux disease
-hypo-pigmentation
-cognitive/developmental delays (retardation)
-Diaphragmatic Hernia

Now, obviously Charlotte had a lot going on. As it turns out she had most of the above (look at her hair again, see how far back it wasn't growing?) Some are hard to tell because she would have had to live for us to see if she had them (i.e. autism, epilepsy, vision loss). With everything she had, she just couldn't do it. And even if she lived, that wouldn't be a life.

This syndrome is deadly and then you add the hernia and it just wasn't survivable. On one of the websites for PKS it says "Prognosis is usually poor. Death is often due to Diaphragmatic Hernia". Just from reading what I can find online, which isn't much, she never had a chance. Talk about dramatic. This girl knew she wasn't going to stay so she decided to take on everything she possibly could while she was here. Like I said, amazing.

Hearing all of this from Dr. Fung really relieved a lot of worry and doubt. I had been wondering if we had done the right thing. What if I had gone in sooner and caught it earlier? What if we kept her on life support? Would she have lived? The answer is, an agonizing no.

For some reason only known to God, she isn't supposed to be here. As I'm typing this, I actually remember feeling the acceptance stage before the anger and grief stage with Conor. This is familiar.

So I've had the first part of this post waiting to be finished for weeks now. They say "Time heals all wounds" and I guess whoever wrote that never lost a baby.

Leaving the hospital with flowers in my arms instead of my baby was probably the most devastated I've ever been. I'd never literally felt my heart shattered until that day. It broke in pieces after we lost Conor and somehow I was able to put them loosely back together but losing Charlotte completely shattered the broken pieces I had left. Everyone was just looking at me as we walked by and I couldn't even fake a smile. I wanted to either cry or yell and tell them to stop looking at me.

I've been feeling so empty lately. My arms have been literally aching. I wish I was sleep deprived from waking up every hour of the night with her, instead I'm sleep deprived because I can't stop thinking about the night we lost her. I wish so badly I could wrap her in a blanket and snuggle her on my chest. That I could smell her sweet baby breathe. I wish I could gently kiss her soft cheeks just one more time. That she could hold on to my finger with her tiny delicate hands. That I could twirl her coarse brown hair through my fingers. That I could dress her up in the adorable pink outfits I bought her. I wish I could hear her cry. I wish she was in the bassinet next to my bed. I wish I could hold her and tell her everything was going to be okay. I wish I could do that completely traumatic night all over just to hold her and tell her I love her again.

I should be overwhelmed by her. I should be desperately trying to figure out her sleep pattern and complaining about how tired I am. I should be taking her to the store and letting everyone "ooh" and "awe" at her. I should be feeling completely alone while nursing her in the middle of the night. I should be changing her outfit 100 times a day and doing laundry every hour. I should have little pink bows to place on her beautiful brunette hair. I should be posting way too many pictures of her on Facebook. I should be watching her grow.

 Instead I wake up every morning to a beautiful little boy and we play. I sit with him while he plays and I daydream. I dream about what I should be doing. I think about how much I want her. About how much she should be here. I think about what her and Owen would be like together. I think about getting after Owen for loving on her too much. I think about her safety next to him. I think about how overwhelmed I would be and how I'm not. I'm almost bored. Then reality slaps me and I realize this could be our life, our future. One sweet, sweet boy. One sweet, spoiled boy. And that's it. One.
 And two in Heaven.

I have this new perspective now. This perspective I've never known before. When I see the mom in the grocery store with one kid strapped to her chest and four in the cart, I see how overwhelmed and exhausted she is. I think about how much she needs a break. I think about how tired and lonely she must feel. Even though she is completely surrounded, she is lonely. I think about how she doesn't have any time for herself, how she wishes sometimes that she only had one kid, or rather about how easy it was with just one kid.  I think that she probably hasn't been on a date with just her husband in weeks if not months. And, I'm jealous. I'm envious, but also grateful that she doesn't have this perspective I have. Sometimes I wish she could though, just so she would be grateful for her five, beautiful, healthy kids. That she could see how blessed she really is. That she could remember, even on the hardest days, that she has kids. That even though they fight, they are alive. That even though they don't always listen, they love her. I've learned with this new perspective that you don't realize how blessed you are until it's gone. I've learned I have to count my blessings everyday or I will forget I have any. I'm not saying being a mom to five or three or even seven is easy. I can imagine it's actually extremely hard.  I'm just saying I think we should all take a second and count our blessings. Because I may look at her and wish that I had five healthy kids when others may look at me wish they had an honest, loving husband or a good, supportive family.

I keep getting told that this is the hardest thing they've seen anyone go through and that they don't know how I'm surviving. We all have crap but I can't tell you that mine is the hardest. It's the hardest for me and for Chris. But maybe your hardest trial is having five healthy kids. A dear friend of mine said that "No one gets the gold medal or the silver or bronze. We all have gold worthy trials". I guess what I'm saying is I miss my baby. And that hurts. I cry every time I talk about her. I wish so badly that she could have stayed with us. But I have Chris and I have Owen. And that's how I'm surviving. They are the reasons I am still trying.

Charlotte May Hendrickson June 5, 2015

I'm going to start by saying I'm on heavy doses of Lortab and Tylenol. I'm seriously having a hard time making complete sentences but I want this to be out so you know what happened. From the beginning of this journey, Chris and I have felt like this has been such a "team" trial. We've had so much support and so many prayers offered on our behalf and that it's such a devastation to everyone that this happened. You are my team and I want you to be in on everything.

I honestly can't believe I'm sitting down at the computer and starting to write this out, again. Trying to explain what just happened, again. Trying to find the words to describe accurately how I feel. So here's my best.

Thursday, June 4, 2015
I had felt her move very gently only three times on Wednesday so when I woke up on Thursday I went straight for the sugary cereal in hopes that would wake Charlotte up and get her moving. I ate and waited. I grabbed a cold water, drank half and laid down on my left side and waited. I started to panic so I dropped Owen off with Amanda and went in to the hospital.

They did a NST (Non Stress Test) and monitored her heart rate for about 40 minutes. Everything was fine. It was a little on the slow side but they figured that was because she was sleeping. I left feeling better but not completely satisfied. I still felt like something was wrong. I only remember feeling her move one or two more times the rest of the day.

Friday, June 5, 2015 
10:00am
I woke up and went for the cereal again but no movement. I tried pushing her around a little and nothing. It was my dad's birthday on Friday so we all (my family) met up for a surprise lunch for him. We got there and I still hadn't felt anything. I really tried to keep calm but I was getting really panicked. We finished eating, I left Owen with Amanda again and had my mom take me to the hospital to do another NST just to make sure, while my dad and Chris headed back to work. I knew she was still alive but I also knew something else was wrong.

12:00pm
The nurse took me back and put the monitors on to listen to Charlotte's heart. Within a few minutes we watched her heart rate drop from the 120's to the 80's. Before I could yell to the nurse that it looked a little to low she came running in. She said "Wait, let's watch it for a minute".

It dropped again. The nurse ran out and grabbed the closest doctor and had her look at it. Within a minute the doctor looked at me and said "This isn't good, we've got to get you to Labor and Delivery".

Right then I was scared but also so incredibly grateful I listened to my gut. I was proud that I finally listened to my body. I knew something was wrong and I didn't care if going in everyday that week made me look dumb.

The doctor grabbed my hand and said "It's going to get crazy, we are going to life flight you because you have to deliver her at the U. It's going to be very dramatic. You will most likely need an emergency c- section and there are going to be so many people around you. Take a breathe and let's do this".

They got me in a wheel chair and ran me up to L&D. The nurses up there must have not been informed because they were moving pretty slow and seemed like they didn't understand the severity of Charlotte's hernia. They started to check me in and had me put a gown on.

1:00pm 
 I remember going into the bathroom to change and getting on my knees to pray. I took the only opportunity I thought I would have to be alone. I hadn't lost all hope yet so I just prayed that it would work out. That this was just a minor problem. That she would recover from this. That she wouldn't be delivered today. That this wasn't fair. That I was suppose to have more time with her. That we had until July 9th or even June 17th. I prayed so hard. I prayed so hard it felt like I was yelling to Him in my head. Like, "Remember?! I thought we had a deal? I need her! You let me have time with her. I demand it..Okay I'm begging, let me have time with her. I can't do this again. Don't you dare make me do this again. I might hate you. I'm serious this time".


I pulled myself together and had mom call Chris. Luckily he only works a few blocks from the hospital so he was able to be there within a few minutes. They hooked up the monitors again and her heart rate would not stabilize. It kept dropping. Every time it came back up I thought "Okay, we got this, she can do this". And then it would drop lower than the time before and I felt such a deep desire for her to live. The deepest and hardest longing I've ever felt.

Then the most amazing thing happened, Dr. Anderson walked into my room. He just happened to be down in the lobby and saw me being rushed to L&D and followed. When he walked in, I lost it a little. A familiar face in this scary situation was so comforting. The life flight team came in and got me all bucked in. The rushed me out to the helicopter and I waved bye to Chris.

My mom was thinking and snapped some pictures before I took off.

 The helicopter flight was quick but her heart rate still would not stabilize. We landed about fifteen minutes later and they ran me down to L&D at the University. Several nurses and doctors came in, put the monitors back on and we all silently watched her heart rate drop. I remember a nurse asking the doctor if she was going to "Push the button" to which she replied "I'm pushing the button, get everyone in here now, we've got to get her out".

Someone came over with a consent paper and said "This is saying we can do an emergency c-section but once you sign it, it's going to get very scary. There are going to be a lot of people and lots of things going on. We usually try to wait for dad but we can't wait. Can you do this?". I signed right away, knowing Chris would not be there. Anything to save this girl. I would have gone to the end of the world. I wished it was me that needed this surgery. I wished it was me who needed to be saved. I wished.

After I signed it about twenty people came in all dressed in their operating room gear, ready to go. They ran me out and down the hall where I heard a woman giving birth, just screaming and yelling. It sounds like this came right out of a horror movie and let me tell you, it felt like it. Everything was so dramatic. Running, yelling, people everywhere hurrying to try and save my baby's life. It was surreal.

We got into the OR and they said "Sorry, we don't have time to give you any medication before the surgery, we just have to get her out. We'll put ya to sleep though". I think that didn't register in my brain. For some reason, going to sleep and not being in pain were one in the same. I promise you, they are not.

 This whole time I was talking to myself out loud, saying "People have emergency c-sections all the time, I can do this, This isn't scary". And when they said no pain meds, no spinal block, no epidural. What? How?

They moved my body over onto the cold operating table, ripped my gown off, spread my legs and shoved a catheter in, threw iodine and a tarp over me. It felt like there were at least 100 people in there and no one was talking to me . They were all talking fast and loud and I remember trying so hard to understand.. After they threw the tarp on me they started checking off the list of tools. I tried to hold my bravery in as long as could but that got me. I really thought they forgot to put me to sleep. As my arms were being strapped down I reached out to anyone and caught a nurse. She grabbed my hand and said "It's going to be okay". I wanted so badly for that to be reassuring but it wasn't.

I started to hyperventilate and cry. I asked if anyone could hear me and if they were going to put me to sleep. No one answered so I cried harder. I remember yelling "Please put me to sleep, I don't want to be here for this". Finally someone grabbed my head and said "I'm working on it I promise, it will be a minute, but we will put you to sleep".

Then I was asleep.

I woke up to Chris, my mom, sister and aunt. I also woke up in the worst pain of my entire life. They put me on Pitocin so my uterus would contract and I wouldn't bleed out. I was literally in labor after they took Charlotte and I had just been sewn up from a cesarean. In full blown labor without any pain medication. I remember thinking "Why would I be in labor right now? Didn't we get her out? Did we not do the c-section?" I was so confused. I remember yelling at the nurse to help me. To give me anything to stop the contractions or to just kill me. I couldn't even ask about Charlotte because I was in so much excruciating pain. In the middle of this, one of the NICU doctors came in and grabbed Chris to go see Charlotte. He came back with a picture and told me about her. She was stable as far as we knew.

4:00 pm 

My contractions started to die down and I started asking about Charlotte. I wanted to know how she was, where she was, how big she was, everything. 

The NICU doctor came in and told us that when they did the c-section, they couldn't get her out. They had to make an even bigger incision and still couldn't. I had so much fluid it was hard to get to her, so they cut my uterus vertically (which means now I will always have c-sections). She said that she was so hard to get out because she was floppy. She wasn't rigid like a normal baby because she didn't have a heart beat. She was dead. 

The finally got her out and were able to revive her but she said because it took them time, they weren't sure how much oxygen, if any, had gotten to her brain. In other words, she wasn't going to survive. No matter what. No matter the surgery, no matter the medication, she wasn't going to make it. 

So we asked to see her and be with her until she did leave us. 

Everyone up there was so kind. They wheeled my huge hospital bed into the NICU right up next to Charlotte's. She looked awful. So lifeless. I felt my heart break. I feel like it was still trying to heal from losing Conor and then it just shattered all over again. 

But look at that hair. Oh my gosh.

And then the most beautiful thing happened. My dad and Chris gave her a name and blessing. It was beautiful. Everyone in the room had tears in their eyes. We wanted this girl. We wanted her so bad. I was so grateful my dad was there to do this. It's extremely hard to express in words the feelings of that moment. Sacred. 

Chris held her for several hours while she was alive on the ventilator. I asked him at one point if we should get her cleaned up and he told me no. He didn't want to let her go. My heart shattered even more. Just when I thought it couldn't.

The longer we held her the worse her vitals got. She was trying so hard to live but she just couldn't. Everything just kept getting worse. She had been sedated as soon as she was born but we didn't want her to suffer any longer than she had to. They told me she wasn't in any pain but it was hard for me to believe that. I hated seeing her on the ventilator. It wasn't right. It wasn't normal. She deserved so much better. 

As soon as we knew she wasn't going to make it one of the NICU nurses was trying to get a hold of a company that takes pictures. I'm not sure how to nicely word "pictures of dead babies".. But she couldn't get a hold of anyone in the county. Around ten she found a lady from Ogden (Stacy) who was willing to drive all the way down and take these pictures. We waited until she got there to take Charlotte off the ventilator because I wanted her to look as alive as possible for the pictures. 

Again, I can't even describe the feelings of taking your baby away from life. My body physically hurting from making that decision. When I said that I had never been in so much pain in my life, I wasn't lying but this, this hurt even more. We knew her little body was going to give in very soon and we wanted to let her go before her body decided to. I didn't want to watch her struggle or suffer. It was unbearable. It was torture. 

Around 11 pm we decided it was time. Her vitals were dropping rapidly and we knew her purpose here on Earth had been filled. She was ready. I wasn't, Chris wasn't, but we both felt strongly that she was. 

They pulled the ventilator out and within a few minutes she was gone. I felt her leave. I felt her spirit leave. Typing this, I wish so badly I could go back. I wish that I could redo that all over again just to be there with her. To kiss her sweet cheeks one more time. To smell her hair one more time. To hold her little fingers one more time. It went too fast. I didn't get enough time.   

Stacy took her away to take pictures and she must have gotten at least a thousand because she had her for about an hour. Everyone in the NICU just sobbed. Chris and I just held each other and cried. The nurses, our family, everyone there just cried. It was so quiet in that room. No one said a word, we just cried. 

About an hour later Stacy came back and gave her to me. At this point Chris and I just wanted to be alone with her so they wheeled me to a new room in the Womens Special Care, where I wouldn't have to listen to new babies crying all night long. We held her from about midnight until 2:30. The nurse came and took her away when we were done and that was it. 

Obviously Chris nor I slept well that night. We fell asleep crying and woke up crying. The doctor said I would need to stay for at least three nights and I did. The nurses were amazing and everyone was so kind but I still was in a hospital without my new baby. My family stayed with me a lot. Chris stayed the first night but we decided he needed to be with Owen more so he left the next day. The following morning my mom brought Owen up so he could see me. He asked a lot of questions like where Charlotte was. Once again, my heart felt shattered. I didn't know how to tell him she was gone. I told him she was with Conor and Jesus. He responded with "Oh and she's coming back?"

The next two days were rough. Luckily I had lots of family and friends come visit to keep my mind off of things, as much as it could. Sunday came around and we were talking about going home. I had been able to get up and walk around pretty well so my doctors were okay with sending me home. We had the discharge papers all signed, I stood up to go and I started seeing black dots all over. I sat down and then felt like either I was falling over or the room was. The nurse came in to check on me, I told her I was seriously dizzy and she told me she was going to check my blood levels. 

She did and it came back that I needed a blood transfusion. Great. I was not leaving. So we did that and I still wasn't feeling any better. They checked my blood again and it had only gone up one point so we did a second unit of blood. After all of that, I started to feel better and we got to go home. 

Here is one of the pictures Stacy took. Obviously little miss had some kind of syndrome that we didn't even know about. I think they ruled out Downs but she had something else. The hospital asked if they could do an autopsy because of her defect and hernia for research. They wanted to do a placental autopsy also to see why she wasn't getting enough oxygen because they think she hadn't been getting enough for a few days. Which lines up perfectly with my feeling of something being wrong. We told the hospital of course. Letting them do that autopsy might help a future family. 

This makes her even more perfect to me. I wish I could have her even more. She is perfect. 

So now, we are planning a funeral. 

Again.

But this time is so much more heartbreaking. We hoped for her. We prayed for her. We really thought she would make it. It seemed like every appointment wasn't good news but it wasn't bad. So we had hope. Hope can do amazing things to a person. 

Today I picked out her burial plot, only three feet away from Conor. 

We are having a very short graveside service for her on Friday and we want you to come. We have felt from the beginning of this journey that we were not alone. We have had so many prayers sent our way for her. We have been on this journey with a team and we want to give you an opportunity to grieve with us. I felt like, after she died, it was such a devastation not only to us but to everyone who had been working so hard to ask Heavenly Father for her life. For everyone who helped us ask for a miracle. 

Graveside for Charlotte

Friday the 12th

 Provo Cemetery at 10am.

 There are several more posts about her coming but I'm just trying to make it to the funeral. 

6-2-15 Having this baby soon?

Had another appointment yesterday- let's just say we all go by first names now.

This is what we are looking like right now- huge. I look like I have twins in there.. I don't. Just a huge baby and enough amniotic fluid to weigh in as another baby. Seriously.

This appointment went well. I always get so nervous going in thinking there could be another problem but seriously how much more can this little girl take? 

1. Single artery umbilical cord

2. Diaphragmatic Hernia 

3. Polyhydramnios (amniotic fluid) which is caused by her not being able to swallow completely and pee it out. I imagine that would be difficult to do when your stomach is in your chest. 

4. She can't drop into the birth canal because there is too much fluid.

I've had a lot of contractions but nothing that is worrying me. Because of my history and Charlotte's problems we are at a very high risk of going into premature labor (which honestly sounds great right now). My fluid level has only gone up by 2 cm, which is making my belly measure 37 weeks. I will be 32 tomorrow. Dr. Gainer also checked my cervix yesterday and we are at 1.3, that's very close to dilating. It is suppose to be above a 2.5. So things are progressing, quickly. 

Because of every issue we have going on here, Dr. Gainer moved our goal date to June 17th, that will put me at 34 weeks and give Charlotte the best chance. Before then would be really hard on her because even though I am measuring 37 weeks (full term) Charlotte has only been able to develop for 32 weeks.. June 17th- That's like.. 15 days from now guys. 

Her cute chubby face and Owens nose. (The left side is being pushed against my belly that's why it looks creepy) haha And that's umbilical cord floating around in front of her.

From now on we go in every week. Actually twice next week now that I think about. Good thing there is such thing as insurance right? 

Next Wednesday I have my Fetal MRI scheduled up at the University. That will give us a really good look at her lungs and how much the surgeons will have to work with. They are also going to look at her liver and make sure none of it is in her chest. Dr. Gainer told us yesterday that 80% of babies with Diaphragmatic Hernia's have part of the liver in the chest and so far on every ultrasound it looks like she doesn't but she wants to be sure, hence the MRI. 

The results from that should be almost immediate so hopefully the doctor up there will be able to tell us what she see's. The the next day I go in to hear the results from Dr. Gainer. If the liver is up a little it just means that her lungs will have even less volume than we thought. Could be bad, could not. 

Also on Thursday, I will get a steroid shot for Charlotte. I'm praying this won't be the last time a take a shot for her. It will help her lungs develop and give them the best chance of inflating on their own once she is born. I am suppose to get this shot at 33 weeks, that's why the goal date is 34 weeks, so the steroid has time to sit. She needs this steroid. 

I will also need to do a Non Stress Test. Never had one before but I will be very familiar with them by the time she comes. I get to do them every week from now on. Dr. Gainer says it's boring and to bring a magazine. I just get hooked up to a monitor for 20 minutes and they watch Charlotte. A non stress test is recommended for women at increased risk of fetal death. It will monitor how her heart responds to her movements. Apparently right now (and in the coming weeks) is the time that she will die is she is going to. We can get a "reactive" result is she moves and her heart keeps up and we can get a "nonreactive" result meaning that she might not be getting enough oxygen or there are problems with the placenta. In which, Dr. Gainer would send us up to the University and I would be induced. 

That has been freaking me out. About a week ago when the contractions started I noticed she stopped moving as much. Before I could count on her around the clock but it has slowed down a lot. I told Dr. Gainer about this and that's why we are doing these non stress tests. It's basically to give her a chance if she is struggling. If they notice something off or not quite right on these tests they will just induce me and get her out. Dr. Gainer is only worried because she has a ton of room to move. Normally, she would be completely squished but because there is so much fluid, it's like a swimming pool. So her not moving as much could be a sign she is in distress. I'm suppose to start tracking her movements just to make sure she's fine and if I get worried to go in and have them look. 

Look at those chubby little legs! Ahh I'm just dying to squeeze them!

So.. a lot of information.That appointment lasted about an hour, after the ultrasound. 

Right now we are- 

A. Waiting for my water to break 

B. Have enough contractions to go into L&D 

C. Find something in the MRI or the non stress test that will make my doctors want to induce

D. Hold out until the 17th

E. If we make it past the 17th, shoot for July 9th

F. There's no way we are making it to July. hahaha 

We are doing okay. It's getting scary now. When we found out she had this defect in February, I thought "This sucks but we have so long until we have to worry about it". Now, we are starting to really worry about it. Every time I have a contraction I try to make it to the bathroom in case my water breaks because we can't afford a restoration company after all these medical bills. 

We have the hospital bag packed and friends and family ready to go when we need them. It's really exciting and scary that she could be here soon. Even though there is still a chance she could not make it, I am excited to see her. I am dying to hold her and see what she will look like. When Dr. Gainer looked at the 3D pictures she said "Wow, she's a chubby girl". And that's the best compliment! That means she will have an even better chance at life.  

So that's the long, crazy update as of yesterday. I will try to hold her in as long as I can.. but given recent experience, that doesn't work. :) 

5-18-15 (Twice the amount of fluid)

5- 18- 15
At this appointment we went in and the ultrasound tech informed me that I have a ton of fluid. To which I replied "Tell me about it". At this point, I feel like we have heard the worst of it so any problem that comes really isn't that shocking.

A 3D picture of her chubby hand hiding her face.

Turns out I have twice the amount of amniotic fluid that I'm supposed to have. At this point in pregnancy, a normal pregnancy, you're supposed to have around 15-20 cm of fluid and it decreases the closer the due date comes. I measured 28.9. She also measured Charlotte and she is measuring a full two and a half weeks ahead; two red flags of Gestational Diabetes. I hadn't done my glucose test yet so she wanted me to get that done so we could rule that out. I went right after my appointment and my number wasn't even close to what it would be if I had Gestational Diabetes. So good, but not good. This means we don't know the reason for the amount of fluid. The only reason this amount of fluid is a problem is because it means more pressure on my cervix also known as preterm labor. If it gets too "full" it can break my water and then we are having this baby. And at 31 weeks, that wouldn't give her the best chance.

With Charlotte measuring so big Dr. Gainer made a goal date of July 9th. This isn't the new due date, it's just a "try to give her the best possible outcome" date. She said if my fluid goes up any more we will talk about draining it. Fun right? This pregnancy keeps getting better and better.

For Memorial Day Chris, Owen and I went to Mesquite to visit family. It was great but the whole time I felt like I was going to pop. My ribs are being pushed because of all of the fluid. I felt like a big baby because I just complained the whole time.. but it hurt man. Like seriously on a scale of 1 to 10, it was at an 8. When I wasn't around family, I cried. Poor Chris, he had no idea what to do or how to help.

5- 26-15
We got back Monday night and I couldn't take the pain anymore so on Tuesday I called my OB and got in that afternoon. He checked to see if I had been dilated at all and I hadn't. Good news. With constant Braxton Hicks, my history and measuring a couple weeks ahead, that was a concern. He measured my belly and I am measuring a whopping 36 weeks. I am just barely 31. Charlotte is measuring 34. Bad news. When he checked my cervix, it was at a 19 and at this point it's supposed to be over a 25. Again, bad news.

Basically, because of the fluid, my body is measuring full term, which means my body is going to act like it's full term. As of right now, it's a waiting game. I am suppose to go in if I have more than five contractions an hour, even if they don't hurt. Well, I didn't know that because that's been happening for the last four days. She said I can get a test done called the Fetal Fibronectin test. It can tell me if I will be going into labor within a week or two.

Right now I'm really trying hard to figure out what my body is telling me. Owen's labor was polar opposite of Conor's and I haven't felt either so I'm trying to find out if there is a third type of labor.. haha I guess I need to meditate and get zen with my body. Oh so frustrating. So very frustrating. Comfort wise, I want nothing more than to have her today. But for her sake, I want her to stay as long as possible.

5-12-15 Pediatric Surgeon

Yesterday was a big day. We got, as my mother in law said, "a brain full" of information. I am almost at the 30 week mark, I think. I honestly don't know exactly how far along I am.. every time we go in for an appointment I am either farther along or not as far as I think. Oh well, I'm not too upset by it.

We met with Dr. Scaife who works at Primary Children's as a Pediatric Trauma Surgeon. He was great. He told us everything we already knew but in a more detailed version. He started by saying that when Charlotte is born they will treat her as if she is the sickest baby they've ever seen. That's a normal standard. She will be immediately hooked up to a breathing tube, a feeding tube, cords and monitors and she will be sedated (in hopes to calm her down). We kind of figured this would happen but up until this point we hadn't been given a for sure answer.

A front view- my wardrobe is consisting of Chris' old fire academy shirts and yoga pants.

I tried and tired to get a picture of just how big this girl is getting with the gray shirt on but it wasn't doing my belly justice. So I changed.. just for a bathroom picture. haha But look at this!

The next two to three days will consist of just watching and waiting. Watching her lungs and her vitals to make sure they are stable enough for surgery. As soon as they are, they can take her away for surgery. He explained to us that the surgery is the easy part. As gruesome as it sounds; they cut her open and pull all of her organs that are up in chest down and put them where they should be. Stitch her up and take her back to the NICU to recover. If everything goes horribly wrong she could be hooked up to the ECMO (Extracorporeal Membrane Oxygenation) machine. It's a machine that works for the heart and lungs. While she will probably look better, the ECMO doesn't fix anything, it will just keep her stable, essentially, on life support. There are two ways the ECMO is used. We are hoping and praying she won't need to be on the ECMO at all but if needs be then there are two types. There is the VV and the VA, both refer to the blood vessels used in the treatment.

The VV ECMO is the better of "two evils". It will be used if there are problems in the lungs only and the tubes are placed in a vein. Like a shunt in the heart.

The VA ECMO is used if there are problems in the heart and the lungs, a big problem. The tubes will be placed in a vein and an artery (usually in the neck).

Being on the ECMO comes with many side effects, scary side effects.

A. Infection- with anything going into the body, that's always a possibility.
B. Bleeding- She will be given a drug to prevent blood clots in the tubing which means there is a more likely chance she can bleed.
C. Small clots or air bubbles
D. Stroke- can you believe that? My sweet newborn at risk for a stroke?

He said there is a chance of bleeding in the brain while on the ECMO which can lead to Cerebral Palsy or severe autistic behaviors.

I can't even begin to explain the feelings I have about this. She is perfect right now and everyone is telling me she could end up with a severe defect or not even make it at all. As much as I wish I could just keep her in here, I want this whole thing over with. It's sounds harsh but if she is going to die, I just want it to happen already. This is just torture. Waiting, hoping, praying when in reality, I have no control. So really, I just want it to be over with.

He gave us the "best case scenario" and the "worst case scenario".

Best case- she is born, adjusts just fine to the breathing tube, has surgery and recovers quickly. She will live a full, happy life without any problems and have a small scar on her abdomen.

Worst case- she doesn't make it.

Dr. Scaife told me to not be too polite in the hospital. He said that the decisions are ours to make. He gave me permission to be frank with the doctors and nurses about any questions I have. (As if I needed that?) :)

I really loved that though.  He wanted us to make sure we are in charge. We will decide how far treatment goes if it looks like she won't make it. Then he said "Well, we'll see ya this summer".

So that's it. I feel overwhelmed all over again. He mentioned that at 34 weeks babies organs don't have anymore room to grow so we could talk about being induced then. But at the same time, they want her as big as she can be. And.. 34 weeks is in 4 weeks..

Chris and I have talked about it and we just want this all over with. We want her to be born and in the NICU already. You could say we are getting impatient. Sometimes this feels like a nightmare that we can't wake up from. It just keeps going and going and going. Sometimes I just want to know whats going to happen. I'm tired of praying and tired of hoping. I just want to know the outcome.. now does that sound Satan's plan or what? :)

So I guess that's it for now. We meet with Dr. Gainer on Monday to talk about the birth plan and being induced! AHH! We are so close I can't even stand it! We are scared but excited.

Quarters

Today was one of those days. You know like when your kid swallows quarters? Oh you've never had that happen?

This is just for my journal purposes.. well actually maybe this might help someone out there.

I put Owen down for a nap at our usually time after lunch. Instead of sleeping he talked to himself or Optimus Prime for quite a while. I let him be because well, that meant I got "me time" (to fold laundry) and he wasn't asking to come out so I figured everything was good.

An hour later, he had gotten pretty quiet so I assumed he fell asleep. I started on the dishes and luckily heard him throwing up. I ran back to his room and started patting him on the back. You know.. helping him throw up? "It's okay buddy, just spit it out, we'll clean ya up when you're done".

He was crying and choking now. In retrospect this is all pretty funny now but please believe my palms were sweating and I was in tears. His huge eyes just looking at me in panic, begging for me to help him. At this point I was smacking him in the back trying to get whatever is lodged in his throat out. More throw up and.. two quarters. Quarters. Not dimes.. quarters. TWO. QUARTERS.

My emotions flew from terrified to livid. Why would he eat quarters?!
Here I am thinking I might lose the only living kid I have to choking on quarters? Who does that?

Even as a crawling baby he hardly ever put things in his mouth. He just wasn't one of those babies. Apparently that phase of life came at three years old.

I sat there for a second trying to understand it. Quarters. Seriously? I said "Owen I thought you were asleep? What happened?" He then, in tears, replied "Mom I just couldn't sleep because I ate quarters".

I was going to take a picture but I figured you would get the mental picture of throw up and quarters pretty easily in your own.

Needless to say we didn't get a nap in today. He took a bath and splashed all over the place, the floor, the mirror, the toilet, etc. The rug was soaking wet but not to worry, I just threw that in with his bedding. Some days are just hard. Terrifying, then funny and hard. And for some reason I feel completely emotionally exhausted. Kids are awesome. Truly. I'm ready for bed.

Mothers Day 2015

Recently on my Facebook feed a lot of my friends are graduating with their bachelors degree and even some from nursing school. As I was scrolling through I kept thinking to myself how crazy time flies and how much they have accomplished since graduating high school. Then that obviously made me question what I have accomplished in the same time. Although I know I am no where near being a "fully accomplished woman", because I believe that doesn't happen in this lifetime, I feel very accomplished.

It made me think about where I have lived, what I have seen, what I have learned and where I am now. And since our fifth anniversary is coming up in August, I guess I feel like it would be a great time to write this all down.

 One of my friends from high school graduated from nursing school and when I saw the picture of her at graduation I couldn't stand how proud of her I was/am. That is a major accomplishment. I remember her talking about nursing school in high school and how that was a goal of hers. She should be proud of herself. I am.

Then for a few seconds I thought, "Well, I'm proud of myself, I have accomplished just as much or maybe more". I am just as proud of myself as I am of her.

This is young, innocent, had no idea what was coming Sarah. (pregnant w/ Owen)

Before we got pregnant with Conor, I was debating taking classes to start on my Bachelors. I was so bored at home with a two year old who was way too advanced which caused me to feel like he didn't need me. I was so frustrated and I felt as if I wasn't accomplishing anything. Like I was just wasting time being a "mom". I felt I needed to do more. I called my mother in law and asked her about it. She told me to pray about it but that motherhood shouldn't be taken lightly. That it is important. That Owen really did need me. When I hung up I was angry. She didn't give me the answer I wanted. No one was. Why did no one understand how bored I was? How unaccomplished I felt? How I can only cook and clean for so long..

Then we lost our Conor.

Losing him helped me realize just how vital being a mother is. Just how sacred it is. I am honored to be called a mom, a stay at home mom in fact. I am proud to hold that title. I don't feel ashamed or embarrassed to be listed as the "home maker". I feel accomplished.

This "job" I am working is way overlooked, under payed and has the worst hours but I would never trade. I would never give this up. I am just seeing how incredible, how amazing, how beautiful this whole thing is.

 I may not have a certificate stating that I have a college degree but I feel I have earned several " life degree's". The most important being, giving life. You learn so many things after giving birth, maybe even enough to qualify for a BA

This is all very specific but I think this could work for any of you mothers out there.
In the time friends have gotten BA degree's, I have had two babies and am currently creating one. I have raised one to be almost three,(I believe that in itself is an accomplishment). I have, not willingly, given one back to my Heavenly Father. And I have stressed, prayed and cried over whether we get to keep this one. I have learned how much time, effort, love, hard work, dedication and most of all sacrifice it takes to be a mom and wife, let alone a good one.


While I have never been to a college party I have "movie night" nightly with my boys.
While I have never studied all night long for a test I have been up all night nursing a baby.
While I have never cried over saying goodbye to loved roommates I have said goodbye to my baby boy.

You get the picture? I think this list could go on and on.

My point is not that being a mom is harder than getting a degree (although..).
My point is I am doing something important. You are doing something important. Something needed. Something that should be cherished.
And I am truly grateful for this understanding now. I am in no way, shape or form saying that being a mom is easy because it is the hardest thing I have ever experienced. It has caused me more devastation and heartache than I've ever known but that is because I have known true joy and love.

I am saying that I love it. That I feel like I am accomplishing something. Even when I just play trains all day.

 I love my boys and little girl. I love that have been able to experience true sorrow and true joy. I feel blessed to be able to be a mother. I am grateful Heavenly Father has trusted me with Owen. And he had trusted me enough with Conor. He knew we could handle that. He knew we can handle Charlotte and whatever comes with her. Although this last year has been just really stinking hard, I have learned a lot about motherhood and I am grateful for that.

Happy Mothers Day!

Side note-
 We meet with the Pediatric Surgeon on Tuesday at 11:30.. so basically if you have a spare prayer, please send them our way. He will tell us what the surgery is like, when they will do it, how likely she is of surviving it and so on. So it could be another heart break day or a great one.