Hope

I know so much of our life has been consumed with getting through each day, each week, trying to be good parents to Collin, trying to be a support to each other, and living. Some may call us selfish for not realizing other's feelings, but one thing I have found when you are faced with a trial that changes your world, you start to run in crisis mode. And that is where we are at. I was reading a friend's blog, and she posted about two families who are suffering. I read the blogs of these two little ones, one, a cute little girl named Preslee, who just a few months older than Collin. The other little guy Jake, was still pretty little, although I am not sure how old he was. There journey was very much nearly the same, in that they were both very little and sadly passed away from two separate drowning accidents. They both were such special little spirits, truly noble and valiant. And as I read their stories, I started to cry. I was looking at pictures of a sweet young mother holding her only child, and my heart ached for her. The strength of both of these families is remarkable. I remember those days after Lilly and Ryker's funerals and feeling the peace. I try to find the peace in my life while dealing with this little one, but I am scared. I do not know what my Father in Heaven's plan for this little one will be. I pray it is for him to journey here on earth, to stay with us and teach us how to be better parents. I always feel bad for Collin, for although he is our third child, he is much our first born. And I want so badly to be able to give him a little brother that can empathize and be there for him. I want to be able to hold this babe in our arms and do the normal things with him. I do not know if that is asking for too much. I hope not. I know we are receiving the best care possible. Our perinatologist is the best possible Dr. for this little one and for us, and I know that every decision he makes is meticulous and well thought out. I think what hurt the most about reading about the losses of the sweet little girl and boy is that is just hits home. It something we have been through, and I realize it is something we could face again. There are no words that will make it any easier, but I know that as we fight for the chance for our son to live, he has two of the best little guardian angels watching over him. We pray that through the skilled hands of our doctors, through the prayers and thoughts in behalf of our little guy, that maybe our outcome will be the miracle so many have asked for. I am not sure my ramblings made sense. I guess I just felt the need to out my words out there. I think we will have to hold on to the hope.

Something I Hope to Never Have to do Again

We had a long morning. Our appointment was at 8 and we left a little after 11 this morning. I am tired and wiped, and I am going to have to take it easy. They scanned our little guy a ton, checking and rechecking. There is some edema (swelling from fluid) on his scalp, which is part of the suspected hydrops. We are hoping that does not change significantly, but it is something that will be watched. They started the procedure, and if you have ever been through an amnio it's rather similar. I was laid back and with the guidance of ultrasound the doctor placed a needle through my abdomen, through the uterus (which is the painful part) and into the baby's chest. I have teared up today thinking about the pain this little one has gone through and not understood why or what was happening. It did not hurt too bad the first time, but I very nearly passed out. It was weird to feel so dizzy, feel like I was going to be sick, have my vision start to fade and not be able to hear clearly. I kept telling myself I could not pass out, but really and truly the last minute or two of the procedure I do not remember much. I was given juice and fed after and felt a lot better. The doctor had me walk around and try to get the baby to move, because after draining 20mL of the right side of the lung we needed the baby to move so they could drain the left side. So after about an hour, we were able to get him in to a good position. They did have to go in twice, but they were able to drain 25mL off the left side. We go back Monday to see how things look, and we are hopeful but still realistic. The hardest part of today was knowing that although what happened was needed (since 1 1/2 ounces of fluid is pretty significant in someone so small)  I have never yet caused any one of my children to be in pain while they are inside of me. It has always been their safe zone. When they were going in the second time, the baby tried swatting at the needle, and although pretty amusing, I just kind of felt sad that he is so little and already having to feel physical pain. Anyways, I need to go rest so I will sign off. I will do what I have to so that he will have the best chance at life as possible, but we are still just living week to week. Thank-you all for your prayers.It was truly beautiful at the end of this to see him looking pretty normal (at least for the moment) and brought us hope that maybe he will be strong enough to fight this and have a chance at normalcy.

A Plan of Sorts

So after talking with our perinatologist this afternoon (who truly is just really wonderful) we have decided to try and drain some of the fluid off of this little guy's lungs. He talked with some of his colleagues and they feel like this would be the best next step since we currently do not know what the cause of the Hydrops is. I am going in bright and early on Friday. It will be approached much like an amniocentesis, something that is not comfortable and that I do not look forward to.  We had an ultrasound today and I have not heard the official report but from I could tell, there was more fluid around the lungs. We are not sure how long this will work, and we may have to have it done again. But we do feel like this is the best step to allow for lung development and that it will buy us some time for this little guy to grow. We are praying it works, because doing this procedure does make us nervous. The general feeling is that the benefits do outweigh the risks, so we turn it over to God's hands and the hands of our doctor. I will have to take it easy and rest, but we will update as to how it went. I am not sure where we go from this, but it is at least something for now. Can you tell I am a bit nervous?

Not Good News

Oh, what a day. Our appointment/ultrasound was this morning. Our biggest hope was to see either less fluid or for amount to stay the same. While the tech was scanning the chest, I could see two pockets of fluid but was really hoping I was just seeing something different. Dr. S. came in, and he talked quite a bit about what was going on. He was not expecting a dramatic change in a week, but not only was there more fluid on the left lung, there is now also fluid on the right lung. We are just shocked and baffled. Dr. S is too. He called our pediatric cardiologist to confer with him. He just does not understand how something as small as a coarctation of the aorta could be causing this, and he wants Dr. S to look into different avenues, which he was doing already. Dr. S is calling it Hydrops, but what is causing the hydrops is unknown. I had labs drawn to recheck my blood type and RH sensitivity, and also to check for previous infections (CMV, Parvo virus, and Toxoplasmosis) and another test but the name was really strange so I do not remember what it is called. He is just really concerned. He wants to do an amniocentesis to check for infection. The great thing about already having had a chromosome study is that we for sure have one less reason to worry. He is also conferring with a couple of other doctors that do fetal surgeries to see about possibly placing a shunt to drain the fluid. We discussed the strong potential of delivering this baby early, looking at weeks instead of the months I thought I would have. I will be six months along on the the 13th of August. And I will be 25 weeks this Friday. We discussed looking at steroid shots to develop our little guy's lungs, but I am utterly terrified delivering such an early baby. I will be having another c-section pretty much for sure. So again, there are so many unknowns and we just do not know where to go or what to do or think. Having an early baby is pretty scary, and when you add any other problems, it just makes it that much more terrifying.  We are just shell-shocked for now. I feel like throwing up, because it just kills me to think about saying goodbye to another child. We truly are trying to hold onto hope that he will be okay, but there almost comes a point after you get knocked down time after time that it is hard to get up, and even harder to fight. I am going to sign off and try to sleep. I feel so worn out.

What We Are Dealing With

So yesterday, (on a much smaller scale) this is what was basically seen. That blue/white space is where a pocket of fluid has formed. Because there was only one pleural effusion seen on the ultrasound, it rules out Hydrops Fetalis for this week. The reason I will go back every week is to monitor this pocket of fluid. Our doctor ideally would love for it to grow smaller and/or  for no other pocket to appear anywhere else in the body.  To be given a diagnosis of Hydrops Fetalis, there would need to be two or more pockets elsewhere in the body. The pockets typically are seen around the heart, the neck, the stomach, under the skin, and the baby can actually have pounds of edema from Hydrops. Hydrops terrifies me. Some of the pictures I saw are terrifying, and the statistics equally terrify me. But I have also read success stories and viewed pictures of children doing well. My biggest hope is that this pleural effusion either goes away or remains a single pleural effusion. Here is some info about Hydrops:

If there is a family history of any of these factors, there is a higher risk for Hydrops.

• Jaundice in other family members or in previous child
• Family history of twinning (specifically, monozygotic)
• Family history of genetic disorders, chromosomal abnormalities, or metabolic diseases
• Congenital malformation in previous child
• Previous fetal death
• Hydramnios in earlier pregnancies
• Prior hydrops fetalis
• Previous fetomaternal transfusion
• Congenital heart disease in previous child

We have five of these factors. Here is the link for the info on Hydrops. But for those of you who want the basics, here are the facts.

How does Hydrops Fetalis affect my baby?

"Hydrops fetalis is a symptom of a problem with the baby. An infant/fetus with hydrops is severely compromised.  The earlier this diagnosis is seen the worse the prognosis.  Some of these babies may even die before they are born. When the diagnosis of immune hydrops is made, it needs to be treated as an emergency and immediate arrangements are made for treatment. The treatment will be partly dependent on the gestational age at which the diagnosis was made. 

There is a 60 to 90% fetal mortality associated with non-immune hydrops. This mortality rate is dependent on the underlying cause. Many of the underlying congenital anomalies (birth defects) have an extremely high mortality rate in and of themselves. Generally, the earlier in gestation that fetal hydrops is seen, the poorer the prognosis.

What is my baby's long-term prognosis?

Long-term prognosis is guarded. These babies are critically ill even if they do survive to birth. Of the fetuses diagnosed prenatally, only about 20 percent survive to delivery. Of this number, approximately half will survive the neonatal period. Long-term survival for those that make it through the newborn period is based on the underlying cause of the hydrops. The data currently shows an optimistic outlook for those babies who do survive.

 Because this little guy (whose potential names right now are Colton or Oliver) also has a coarctation, we are very concerned because not only could he be dealing with Hydrops, he will have to have his little heart repaired. Unless the fluid goes away, I will have a c-section, and they will immediately intubate this baby. You can see why we feel so stressed at even the possibility of Hydrops. I am also at an increased risk for my health if this develops into Hydrops. 

"Hydrops may be complicated by preeclampsia and/or mirror syndrome (involves pregnancy-induced hypertension or high blood pressure with renal/kidney involvement) in up to 50 percent of the cases of non-immune hydrops. With mirror syndrome, symptoms in the mother mirror the symptoms in the fetus and can be life-threatening for her. Mirror syndrome can happen at any time during the pregnancy and can persist even after the baby is born.  The only treatment for mirror syndrome is immediate delivery of the baby and/or when possible, treatment of the fetus to resolve the hydrops. Preterm labor can be a complication of polyhydramnios (as well as preeclampsia)."

If this remains the pleural effusion, than we are again questioning as to why the pleural effusion is happening. Yesterday, this baby's heart function looked great. But there has to be a reason the pocket of fluid is there. We than bring in the question of whether he is in heart failure. And if it is heart failure, we are looking to when we can safely repair the problem. I wish I lived back east. I would be going up to Boston, where they are doing in-utero surgeries. We also have to watch the development of the left lung, to ensure it is growing during this critical period. The doctor talked to us about removing the fluid off, whether by a one time needle aspiration into the baby's lung while inside of me and removing it that way, or possibly placing a shunt to drain the fluid. 

So those are the basics for now. As you can see, so many unknowns. It is frustrating to feel so out of control. Our families will be having a fast this Sunday for our little boy. Anyone who can or would like to join in that effort, we would be very grateful to. It is very difficult to hold onto faith, when you feel so crushed and broken. I am having a hard time keeping myself together. I have cried a lot, and am going through so many emotions. My biggest hope is to not have to attend another funeral for one of my children. So if I seem sort of testy, or short, or just seem like I do not have a handle on things, it is because I do not. Mike called me this morning to ask how I am doing. I told him the dog had been taken out to the bathroom, Collin had been changed and was in clothes, and I had gotten dressed. And I told him that would probably be it for the day, and it was. So thank-you for the kind words and support. We are hanging on by threads for now.

Crappy, Crappy Day

I feel as though I am going to bust. I have laughed today so as to keep from crying. We had our perinatology appointment today. The tech scanned us, things looked good from her end. Our Dr. just got back from vacation today, so was actually on the phone with our cardiologist right before he came in. He could not believe this baby had a coarctation, and so his focus was trying to get some shots of the heart. Now coarcs are very difficult to diagnose while in-utero, and the baby was not in a good place for our doc to see the aorta fully. He scanned around, when he showed us something pretty concerning. The baby has what is called a pleural effusion  around his left lung, which set right alongside the heart. This is very concerning for a 23 week baby to already have a pleural effusion. He has two huge worries. The first is that this baby could potentially be in heart failure. When he said these words to us, I lost it. The second worry is that the pleural effusion is the beginning of a condition I do not understand or know very much about called hydrops. But what hydrops does is it can cause pockets of fluid around the heart, lungs, stomach, etc, causing the baby to need be born early  the baby is sick. And when you mix a heart defect in there, it is just scary. There are so, so, so many unknowns right now, and I truly feel like I have been fried. I have been told that to have three children with such significant problems is just insane, nearing impossible. I have to start going to perinatology weekly for now, and I really feel like we will be living at Primary's again sadly. I need some quality carbs right about now (I am thinking some Olive Garden) and just feel like we wish we knew more, could understand why this is happening, and what to expect. But none of that will be answered anytime soon. There is the possibility that this baby could come pretty early, potentially within weeks, which terrifies me. I guess I had better get to nesting. We are just praying that this baby will be as healthy as possible. I hate the unknowns. I hate not being able to plan or understand. We are in the waiting game.

Picture Update: Family Reunion

We

My Dad's side of the family held a family reunion this year in California. We were crazy enough to go. We left Friday evening at about 6:30, got to Reno around 1:30 am Nevada time, and slept in a hotel. Collin is not a marathon car sleeper, and he slept like a dream in the hotels we stayed in. We left Reno at 8:30, and arrived in California to our destination at 11:30 in the morning. I am so glad I had siblings there, because I hate to say it but it was not that fun. We are LDS. One of our standards is not drinking alcohol. My Dad's whole side of the family (besides my Grandma) are not LDS and basically their idea of fun was drinking the whole time. So after being in California around a total of 27 hours, we left for home. One of my favorite parts of this trip was seeing one of my "adopted" brothers who lives in Cali. Collin LOVED John, and would not leave his arms once he was being held by his Uncle John.

kjkjkjj

I grew up with John in West Virginia (and his wife Cassie) and John practically lived at our house (when he could) and even lived with my family for some time in Utah before his LDS mission. We love seeing John and Cassie and really wished we lived closer. 

Not all of my siblings were able to go. But it was a lot of fun to hang out with the ones who were able to come. My baby sister Amelia had a sleepover in our hotel room, which was just funny since at 11 o'clock at night, we realized the AC was not working and switched rooms. We did not realize it was into a smoking room until we had already switched Collin into his room (while sleeping in a pack-n-play ironically) and so we tried to air it out. But being cool outweighed the smell. We were able to eat at a really yummy Mexican restaurant, and got a little swimming in. I must also say that spending quality time with my cute niece made it well worth the trip too. 

She just kept wanting someone to chat with, and would giggle and smile so big when I would. She is so freaking cute. And her name is Khloe Lillian, with Lillian being in honor of our Lilly. I just want to love and squish her cuteness all at once!

This is my Dad and his brother. I have not seen my uncle since I was probably 12. He was another positive part of the trip. He was always the uncle we saw the most, and loved spending time with his three boys.

Collin was happy at the ranch. He slept great at night after being there. My cousin had ducks, chickens, goats, and a bunch of other animals that fascinated Collin. We stopped in Reno on the way home to spend time with my sister at her sister-in-law's and ate some yummy spaghetti. We drove through to Elko and stopped for the night. We got up early and drove home. We were anxious to be home, and anxious to see my little brother who was being deployed that week. There are few thing better than arriving home, and settling back in. I really missed my bed!!!

Feeling Broken

I do want sympathy or judgment on this. And I know Mike is going to be shocked to realize I posted something so personal, but this is my outlet. I think I am broken. I am not sure how to fix myself, and maybe I never will be fixed, but it seems like so much of life is just fake. I am not a perfect person. I am not sure I ever will be. I was pretty well stitched together before such extreme pure grief came into my life. And than 13 months later, it hit again. People tell you to move on, that time eases the pain and grief. Grief is a process. There is no set time limit on grief. I am pretty good at faking it till I make it. And much of my happiness is true and real, but I never really show what I feeling deep down inside. And really and truly, much of my happiness seems stacked on such poor foundation that I always fear the happiness is about to teeter off. It scares me to even write this. Because like another angel Mom, I feel judged writing something even like this.

I know everyone is a little crazy/neurotic on some level. And some people are able to hide the craziness a little better. But sometimes that crazy is let a little loose and you are left with something like this. I do not like to be fake. Nor do I like fakeness in others. But since I lost Lilly and Ryker I have changed. I do find joy in life. But I am also angry. I am angry to have lost two precious, precious people in my life. I did not go to the movies until about 18 months after we lost Ryker. Why, you ask? It is because I was angry that people could find such simple enjoyment and fulfillment in something so inconsequential. I love God, and I am grateful for the blessings I do have, but there is also a part of me that is always asking "why me? Why us? Why them? Don't you know I can not handle that? Don't you know how much I am hurting? Why did I have to say goodbye to my babies and yet you allow so many others that are unfit to have child after child?" I am hurt, I am angry. I loathe myself for feeling this way. I hate being the fake person I am. I hate pretending. 

I remember growing up in Ohio, and there was a family that was in our ward and they constantly acted sad and sullen. They had a little girl who passed away when she was very little from choking on a small toy. But I look at them, and although they were good people, and I was very little, I remember thinking that they looked and acted broken. And little did I know that I would be much the same. Do not think me ungrateful, because this is not what this is about. I have a hard time doing the spiritual things in my life. I think a lot of times the gratitude I do have to God is outweighed by my being hurt and angry that the world and my life is what it is, and I do not have the control to change what happens.  I do pray, but sometimes I wonder if my prayers are truly heard. Besides it being very hard to take Collin to church and have him sit for three hours, church is something I used to love to do and now find hard to do. I go with Mike every other week, but the weeks he is not there, I do not desire to go. Because I know that I will have to put on the happy persona, that I will have to grapple alone with a little boy that does not understand how to be quiet or reverent, and that people expect me that after nearly three/four years of losing our children, I should have moved on. I feel like I will end up crying the whole time, because I am tired after working the last couple of days prior, and when I am tired, my emotions gets the best of me. And than I feel the self-loathing from being so far from perfect, as so many other just seem to have perfected: the art of being perfect.

I know many others loved Lilly and Ryker, but what does it seem like Mike and I so often are the only ones that miss them? I feel like much of my grief is spent in the arms of husband. Maybe people think of them, and maybe others just think it will make us sad remembering them and reminding us, but one of the worst things as a parent who has a lost a child (especially one that is young) is for them to be forgotten. I feel like so much is expected of such a broken individual that I am. I show pictures on the computer to Collin, and today I was going through a group of pictures labeled "camera card one" which is the card that has the pictures of Ryker when he was passing and than passed. That was a very hard day. I do remember the peace we felt. But the time we had with Ryker were truly anything but peaceful. One moment in particular was one of my top three lowest moments of my life. And looking at the pictures today, and the pictures of our niece Gracie when she was born and so sick, I was really saddened. I really hope this baby is born heart healthy. But one of the parts of going through what we have gone through is that you become this sort of pessimistic/realistic person. I do not want to go back to Primary Children's Medical Center.  I do not want to hand my child over to the hands of surgeons and nurses. It makes me angry to even think about having to spend one day with this little boy there. I want a healthy baby. I want to be able to have my son in my hospital room, to be able to hold him and feed him, and do what I want with him. I do not want to be told not to touch or talk to him because his blood pressure is too high. I do not want to deal with nurses who are sub-par comparatively to their counter-parts. I want to be able to just change my little boy. I want him to be able to wear whatever clothing we want to put him into. And I want to just enjoy my child, not living in fear of the what-if's.

I understand that much of what I am feeling is contributed to the never-ending grieving process. Does that make any of what I feel/experience any easier? Certainly not. I know that there are many others sadly that can relate to this. I am not sure what will come of putting it out there, other than scaring people away. But this is who I am. This is the person I am. I am ever-evolving, changing all the time. I am not the same person I was 6 years ago when I was about to get married. Nor am I the same person I was three years ago when I said goodbye to my son as he passed from this world. And I do not want to be. Nothing is ever the same. Sometimes I wish it was. I am going to stop writing now, and maybe go take a nap, wake up, maybe feeling better and a little less angry. I am just putting these feelings out there, because I realize life is not hunky-dory happy all the time. Grief is part of life. A really hard part at that. I worry about  people who do not show emotion. But than I wish I was better at keeping it perfectly bottled in. I am who I am, and what you see is what you get. Even if I do have to fake it enough to get through the day.

Here is something I will try to be happy about today: my baby is growing and kicking harder. 

And he had his first case of hiccups this week.

My Little Brother

 I have lots of pictures from tonight, but I just wanted to share the news clip from my brother's group that is leaving for Afghanistan. He is actually in the clip, he is one of the guys shaking hands right before they board!!! Love you Jake and come home safe!

http://connect2utah.com/news-story/?nxd_id=98875

Happy 4th of July

We were away this weekend for a family reunion, probably one of the last for my Dad's side of the family. I will post pictures and our adventure later, but I just wanted to post my appreciation to live in America. Growing up, this kid:

 (who happens to be one of my little-big brothers) always told us he wanted to be  soldier. As soon as he was 17, he signed up for the National Guard and spent his summer at boot-camp. He has made a great career with the National Guard, and although I knew this day would come, I have not looked forward to it. I cannot specify when, but he is leaving us too soon to go and fight in Afghanistan. It is something my whole family is pretty emotional about, because he will be out there in the front lines fighting and we do fear for his life. We will pray that he will be safe, that he will come back to us safely and that his wife will feel comforted while he is gone. He will be back in a year, and we look forward to that day we will be reunited once more. It makes July 4th a little bit of a different day, and maybe he will be home next year to celebrate this nation's freedom. So long Jake and know we love you!!!

The little other blurp I wanted to blog about is the results for our fetal echo. We went up Friday afternoon and everything went perfectly till the end. I was kind of drowzy at that point (I did work the morning at 6 and it was my nap time) but the tech just kept telling me that the baby was not cooperating with the last view we needed. When they do the echo, the top part of the heart and the ascending aorta are the two parts they look at last. After quite some time, the cardiologist came in to take a look. When they stopped, he said he wanted to talk with us in what I call the "situation room." I told Mike there was something small wrong, that I  could just tell. I still was smiling though, because I could handle anything because I knew there were four chambers. He came in with the counselor and told us that the ascending aorta is small, smaller than what they like to see with a baby of our size. He said the baby could still grow and their hope is that the aorta will grow, but because of the family history of heart defects the odds are not in our favor. I have to go back in nine weeks for another fetal echo, but if there is still this problem, it would be the same heart defect Mike actually has, a co-arctation of the aorta. He said I would probably have to deliver at the same hospital I delivered at with Ryker (something I will probably fight him on) because if it is a coarc, it typically does not have to be repaired right away. We will know more than, and maybe even more when we go to perinatology in a few weeks. I am not stressing about it, because everything else looks great, and because Mike was able to go so long (undiagnosed) and be perfectly fine. So that is it for now. I will update when we know anything more, but when you compare the hypoplastic left heart child to a coarc, it is something that is not critical typically and a pretty decent repair.