Tuesday, July 27, 2010

I really hesitated posting this; I wanted to always keep my blog positive. But then I thought, it's normal to be experiencing these emotions and I shouldn't pretend like we've been immune to them...

I have had a hard time getting motivated to write recently. I usually wait to write until I'm in a more optimistic mood, but I haven't had a consistently positive day in a little while now and I feel like maybe I shouldn't hide the fact that it has definitely gotten harder. I don’t know why it seemed easier at first… maybe it was because it didn’t feel real yet. Maybe it is because we feel like we are expected to be moving foreword by now and aren’t ready to. Maybe both.

I think for me it has gotten harder in part because I have been consumed by mixed emotions. I am sad because I miss Jonah, I am happy because he is in such a better place now, I am filled with pride because I was chosen to be his mother, I am angry because mothers who smoke and drink during pregnancy have healthy babies, I am motivated because now I have a very high standard to live up to, I am filled with regrets of things I wish I would have done differently had I known Jonah would be leaving that Saturday afternoon, etc, etc.

At the same time, it has also gotten harder because it feels like some of my memories are fading and I'm left only with what was captured on video and in photograph. I hate that. I want to remember every little sound and look he made, recorded or not, and I want to be able to access those memories whenever and wherever I want.
I know I need to move forward, and I want to, but at the same time, I can't stand the thought of moving on without my baby. I want him to be in all the memories our family will make; it makes me feel guilty thinking that we will be doing things without him. I know that his life hasn't stopped, and neither should mine, but for now we are separated and it is hard to keep a healthy balance of remembering him while moving forward.

Every time I get too consumed in these thoughts, I just have to remind myself of where he is. I do not doubt this knowledge for a moment. I know he is hard at work doing whatever it was that Heavenly Father needed him back so soon to do. I cannot imagine what I would be feeling right now if I didn't know where Jonah was, and that I will be with him again. I don't think that is a trial I could handle. I wish everyone could know that God lives and that there is life after death. I want everyone to understand that their lives, even short ones like Jonah's, have meaning. If there is anything to be gained from our loss, it is this knowledge.



The other day I was reminded of a quote I had heard a few years ago: "Everything will be okay in the end. If it's not okay, it's not the end". :)

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Wednesday, July 21, 2010

It's Okay to Say Jonah

I've always been one of those really awkward people who doesn't know how to act around others who have been or are going through something tough. I am so embarrassed to say that whenever I knew of someone going through the loss of a loved one, I would awkwardly pretend like I didn't even know what was going on because I didn't know how to act. It seemed to me that the person would appreciate me ignoring them so as not to cause them to break down into tears upon my expressing sincere condolences. I remember in particular one girl who I was associated with who went through a situation very similar to ours except her baby passed in the womb. I found out about her pregnancy and the fact that her baby had a tumor a few weeks before her baby passed and since she hadn't personally told me about it, I figured it would be less awkward if I simply pretended to be unaware of the entire situation. I never once expressed my love for her or reached out to ask if she needed anything. Instead, I shunned the situation and let her think I didn't care. I share this story only because I am so embarrassed by my own behavior and wish so badly I could go back in time to correct it knowing what I know now.

After talking with my sister-in-law who also has a friend who lost a baby, I discovered that my reaction to my friend with a loss is not all that uncommon. People who have never gone through a significant loss often feel awkward about how to address those of us who have. Just like I did, they feel like if they say anything, it will cause a breakdown of unwanted tears. It seems like the best solution is to simply pretend nothing is wrong and pass by avoiding eye contact.

Now that we are those people, I feel like I need to correct my own embarrassing mistake and let everyone know that it's okay to talk to us about our loss :) In these past two weeks, I've watched my family and friends try to figure out how to deal with Ransom and I and learn when it is okay to bring up babies or Jonah or cancer. I've come to the conclusion that people are so lovingly concerned with causing us pain, that they will avoid bringing up anything under these lines on their own, but as soon as we do, they breathe a sigh of relief and say they are so happy we brought it up so they can ask about it. And so, I felt like it was important to tell all of you that we parents love talking about our babies. Just as much as parents with babies growing and teething love sharing stories, parents with babies who left us for heaven love talking about the short experiences we had with them. We love when people ask about Jonah. In fact, I love talking about him so much that I sometimes feel like a teenager who is constantly waiting for someone to bring up her boyfriend just to have an excuse to talk about him! :) We love when they ask about who he resembled just as much as we love questions about his passing. We don't mind being reminded of his death. To us, his death is just one step closer to life again. You don't need to wait for a parent to bring up her deceased baby to talk about him/her. Of all the parents in our situation who have reached out to us, I think we all feel the same way.

So, when in doubt, ask away. If you are uncomfortable asking about the experience, at least let the person know you're thinking of them. The worst thing to do is to pretend you don't know. Now that we've been there, we can tell you, it feels worse to be ignored than to reminiscence about a painful experience with a friend nearby.

Thank you everyone for all of your emails, messages, texts, cards, flowers, dinners, desserts, hugs and calls. We can't believe how many people we haven't talked to in years have reached out. You have done for us what I should have done for my friend. We know now how good it feels to have such overwhelming support and I can only hope my friend got that from others too, despite awkward people like me.

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Friday, July 16, 2010

A Good Day

It's been almost a week now, and we've had some good days and some bad days. But mostly good. It's amazing how much someone you only knew for a few days can change your life and the way you see it. I've found that my little guy has caused me to look for the good in situations where I'd much rather feel sorry for myself and sulk. For example, who would enjoy having a graveside service for their own child? I went to sleep Wednesday night dreading the next day that I would see my baby's casket and have to reminiscence on his death. However, I woke up to the sun shining through our window and a sweet peace that I have come to recognize as Jonah's. And I knew that this was not going to be a bad day, but rather a happy one. I was going to be with my family as we remembered the baby that stole all of our hearts. Just before we left, I had a few minutes and thought I should open my scriptures to a random page and just read. When I did, I found myself reading about the day Mary went to go see Jesus and discovered that his body was no longer in the tomb. He had risen. What an appropriate scripture. I know that because of Jesus' sacrifice, Jonah will rise again too.

We had a sweet, small service for Jonah with family. It was really nice to be able to gather together by the small plot of land Ransom and I chose at the cemetery. The cemetery is within walking distance to my house and is where my grandparents are buried as well. They have a piece of land that is reserved for children called, Lullaby Land. For the smallest children, there is land edged by a hedge shaped like a heart with beautiful landscaping. We chose a plot on the eastern edge of the heart next to a rhododendron tree. It felt perfect to both of us. And now, we can go and visit our baby whenever we want. The marker we designed wont be done for 6-8 weeks, but when it's down, we will post pictures :)



So sweet:)
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Monday, July 12, 2010

Reasons to Rejoice

It's been a few days now and in this very rough time, I keep feeling like I need to try to write down and remember all the tender little mercies that have taken place that have made our trial bearable. There are so many:

The last few months of my pregnancy, we moved home after graduation to save up money before moving to Arizona. This prepared us so that we would be with family during this time.

Ransom was unable to find a summer job. This made it possible for him to be there 100% for all the doctor's appointments and hospital stays and now to be home with me.

My sister Brieanne lived at my parents house for a few months which helped us become even closer and turned her into my support person when everything happened.

My doctor had a slight suspicion that Jonah might be breech and ordered an ultrasound that most doctors wouldn't have ordered which is when Jonah's hydrocephalus was discovered. Had this not happened, I would have gone full term and by that time, Jonah's tumor would have taken his life in the womb and we wouldn't have had the chance to meet him.

The UW radiologist was able to detect the appearance of a mass in Jonah's brain and ordered an MRI. It was this MRI that let them know that the mass was there and growing which is why they decided to deliver him so soon. Little did we know, that tumor would take Jonah's life only 3 days later.

We were expecting Jonah to need a breathing tube as soon as he was delivered but he came out screaming and just as healthy as any newborn, besides his large head. Because of this, I was able to see him in the operation room and Ransom could hold him next to my head and we spent time together before his transport.

Most women are pretty immobile for days following a c-section. I was able to be healed enough within 24 hours to get up and visit Jonah. The nurses were amazed by my speedy recovery. Because of this I was able to wake up early on Friday and spend a few hours with him in the morning and again in the evening. Friday was an amazing day and was the day I really felt like a mom for the first time.

So many people were able to meet Jonah. Both of our parents, Ransom's sister, my sister, sister in law and brothers all got to spend time with and hold him. Jonah was definitely a charmer and stole everyone's hearts right away.

Once Jonah's shunt surgery was over late Friday night, the doctors would finally let him take in food by mouth. I had been able to pump quite a bit of colostrum over the first few days and was able to give him what turned out to be his first and last feeding by mouth with only my colostrum. Though I would have loved to have fed Jonah by breast, all the pumping was so worth it to me to finally be able to see him being fed all natural food created by me exclusively for him.

Jonah's health was as stable as any other newborn's for the first 2 days. Because of this, we could hold him and enjoy all his movements and sounds just as any parents can. It was not until Saturday late morning that his health changed his disposition and physical appearance. This helped us really get to know Jonah. We felt his personality and noticed some fun traits. One of our favorites to notice was that he always wanted his hands free. He didn't like when the nurses would swaddle him with his hands under the blanket. Ransom and I are both the same way. We hate our hands being restricted and Ransom even sleeps with his arms above his head like Jonah would try to do.

When Jonah began to have trouble breathing and things began spiraling downward, I was holding him. It brings me such peace that we were with him when this scary situation began to unfold. Had it happened in the middle of the night, we would not have been with him. But instead, we stood by his side the whole time and were able to comfort him.

As Jonah's breathing became something he could no longer do for himself, and the doctor's told us that this could be it, my mom called. She and my dad were not planning on coming to the hospital that day and were on their way to the temple where they would be out of reach until late at night. She had a feeling that she should call and check in and had she called any earlier I wouldn't have know that they should come. But at that moment I knew they needed to come, and they were there in time.

Ransom's dad had happened to look up in the church handbook the night before, the procedure for giving a name and a blessing to an infant in an emergency situation without authorization from the bishop. Because of this, we knew it was okay to go ahead with that and Ransom gave Jonah a beautiful blessing with the help of our fathers just before we unplugged his breathing tube.

Jonah's passing was comfortable and quick. Because of the positioning of Jonah's tumor over his brain stem, he was unable to feel as well as breath. Once we were ready to unplug his tube, he passed without pain. Ransom and I were able to be alone with him as we held him during this process and we knew that he was ready and was not suffering.

After he passed, Ransom and I were able to bathe him for the first time. It was peaceful and we were able to take off all his IV's, wires and monitors and relieve his body from all the restrictions that had been placed on him.

We had been able to take many pictures and video clips of Jonah. We look at them dozens of times a day now and are so happy every time we see them or have the opportunity to show them off to others.

The night before Jonah's birth, Ransom gave me a blessing and in it counseled me to bring my journal to the hospital and to write in it often, with great detail the events of the stay. I took that counsel to heart and am so grateful now that I have all those feelings recorded and will always have them to look back on.

We have the gospel in our lives that reminds us that families are forever. And that one day, when Christ comes again, we will be given Jonah back, and be able to raise him and have all the experiences with him that we would have had now.

We have so many people supporting us through this time. We have received so many comforting texts, messages, flowers, meals, cookies, cards, etc. We feel so much love from everyone around us. Though we feel a bit overwhelmed to respond to everyone, we appreciate it so much.

We received news today from Jonah's autopsy that his tumor is not a specific type the doctors were concerned it might be, that could have metastasized into my body and caused danger to me. Because of this, we are able to move forward and no longer fear for my health.

The name we picked for our son, Jonah, is Hebrew for dove. A dove is the symbol for peace. All those who met Jonah commented on how much peace he brought. His name turned out the be the perfect representation of his sweet and continual peace.

I'm sure I'll think of more of these precious mercies that we have experienced. It feels so good to write them down and see just how involved the Lord has been in the life and passing of our son. We know that we have been and are continually watched over.
It's important to me that everyone meets Jonah. I want to share him so you can know who he is and if any of you get to see him again before I do, you can give him a hug and kiss for me :)


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Saturday, July 10, 2010

Jonah



Jonah was born Thursday, July 8th, 2010 at 9:03am weighing in at 8 lbs and measuring 19 inches long. We came prepared for the worst and knew that we might not see Jonah alive after his birth. To our absolute delight, Jonah came out screaming indicating that he was able to breath and be stabilized on his own. Because of this, Ransom was able to hold him right away as I got to give him kisses and touches before he was taken to the Children's hospital NICU. There Jonah was visited by Ransom, my parents, Ransom's parents, and my sister on his birth day and by me, Ransom's sister, and my brothers and sister in law the next day. I got to hold him, sing to him, change his diaper, give him kisses and finally feed him. Everyone who met Jonah was instantly taken with his sweet sweet spirit and innocence. As his parents, we couldn't have been more proud of his remarkable health and strength for the time he had. But, as we had intuitively suspected, Jonah's health was not able to withstand the very large tumor in his small brain. The mass in his cerebellum grew about triple its size over the night last night and was bleeding into his brain and covering his brain stem. This blockage made breathing impossible for Jonah and he was taken from us at around 4:30 this afternoon after receiving a name and a blessing by Ransom along with his grandfathers.

Obviously Ransom and I are emotionally torn apart by the loss of our son. But, as we have been able to slowly digest the details of these past months and especially weeks and days leading up to Jonah's short life, we cannot help but praise God for the tender little mercies we have witnessed. From the early diagnosis catching the tumor that would have taken Jonah before his birth and not allowed our meeting him, to the good health and responsiveness he had for his first 48 hours, to the timing of his arrival while we are living at home and have so many family members and friends for support, etc, etc. We do not doubt for a moment the Lord's hand in all of this. We are so grateful for Jonah's life and that we were the parents he was sent to. We love him so much and are so comforted by the knowledge that we will be together as a family with him again.

As for now, we are very numb to the reality of the situation. We are home and with family but are unprepared to start taking phone calls or visits at this time. We have appreciated the texts, etc and are sorry not to be responding back but I'm sure you understand how hard it is to talk about repeatedly.

Wednesday, July 7, 2010

Here we go

Well, here we are. We spent all day at the hospital today and had our MRI, fetal stress test, NICU visit, and doctor consultations. By the time of our doctor's consultation, the MRI results had been received and the news is not so good. There is definitely a mass in the back of Jonah's brain. They won't call it a tumor yet because it's not clear, but they really don't like it. Apparently it is large, has blood in it and is creating pressure on Jonah's cerebellum, choroid plexus and worst of all, his brain stem. With these results, the doctors decided that they think it would be best to have the c-section tomorrow morning. They want him out so they can get a more clear MRI and start making decisions about his care. So, yay for having our baby tomorrow... Just wish it was for happier reasons.

Right now we are expecting lots to be be wrong with Jonah when he is first born. With the mass on the brain stem, breathing might be a major issue for him as well as everything else going on. As of now, the game plan is for the c-section to be done at 9 and then Ransom will follow Jonah where ever he goes in the hospital until he is stable enough to be transferred 2 miles down the road to the children's hospital. I will hopefully be able to see Jonah for a few minutes or else just in passing as they take him away and I have to be stitched up and taken to recovery for a few days. It's these few days that I am dreading the most. I just wanna be with Jonah, but I have to deal with the fact that I can't and Ransom will have to be my eyes, ears and arms. My doctor did say that they'll let me take a 4-6 hr pass to go visit him hopefully on Friday if I am recovering well. Most likely I'll be discharged on Saturday and rejoin my boys. I have my momma and other family who will be with me during recovery though so no worries.

Apparently the NICU sets us up with a website thingy that lets us update with Jonah's status and pictures so we'll be setting that up of we can't get consistent internet to update the blog. But just as a warning, Jonah's prognosis isn't looking all that great right now according to what the doctors saw today. However, after the roller coaster of opinions we've been through these past 10 days, we're not going to take their predictions too seriously and just wait and see what happens as it happens.

A heartfelt thank you for all of your support, love and prayers. We really feel at peace with everything and we are going in tomorrow full of hope but knowing that whatever happens happens for a reason.

38 weeks tomorrow and here is my final belly shot:

Thursday, July 1, 2010

Not the news we were hoping for...

These past few days have been quite a daze. On Monday, we went in for our 36 week check up. My doctor did an exam and was concerned that the baby might be breech so she ordered an ultrasound. An hour later we were in the ultrasound room and the technologist confirmed that he is for sure a boy and he is not breech. She then took a while looking at everything else and then sent us back to our doctor's room for a consultation. Finally our doctor showed up acting really shocked. She sat us down and asked us if we had ever heard of hydrocephalus. I remembered briefly learning about it in my anatomy class but we were so shocked that we weren't really able to think. Basically, hydrocephalus is when cerebral spinal fluid is stuck in the baby's brain and is unable to drain due to a blockage in the aqueducts which normally drain this fluid. When the fluid gets backed up it creates a lot of pressure on baby's brain. There are lots of things it can affect since the brain is the control house for the whole body. So obviously, it can be a pretty scary thing. It turns out that at some point between our 19 week ultrasound and now, our baby has developed a pretty severe case of hydrocephalus.

Since that meeting, we have met with a couple other specialists and have concluded that the baby's main blockage is in the back of his brain near the cerebellum. The cerebellum controls walking, balance, etc. We had our 3rd ultrasound in a row today and the radiologist has some reasons to believe that the blockage might be due to a tumor in the back of his brain. We have an MRI scheduled for Wednesday that will hopefully confirm or deny the tumor theory.

As for the health of the baby; we really don't know much. We have every reason to believe that he will survive. However there are numerous problems he could have. Or, he might not have any problems at all. So long as this is not a rapidly growing tumor, doctors agree that they want him to be born as close to his due date as possible so as to prevent any other health problems premature babies can have. Due to the massive amount of trapped fluid, his head is extremely large (which is not that big of a deal since babies skull plates have not fussed together and allow flexability, but is a pretty scary thing to look at). So, we will have him via a scheduled c-section close to the 26th unless there is a rapid tumor growth. The pediatric neurologist will be meeting with us and helping us make decisions about how to treat him once we figure out what is causing the blockage. The most common treatment for hydrocephalus is to surgically insert a shunt from the baby's brain into his abdomen so it can absorb the fluid. If it is a tumor, I imagine they will remove it.

The main thing is that we really don't know much. We don't know what is causing this fluid buildup, we don't know what/if damages are occurring in his brain, and we don't know what he will be like. It's been a pretty difficult week to say the least, but the more days that pass the more secure we are feeling about it. We know we love this little boy and that we can handle whatever comes our way. Please don't feel sorry for us because we really are so grateful to be having a baby at all. We appreciate the love and support we've been receiving and we will be updating with whatever information we receive as soon as it comes.

As most of you know, we were keeping his name a secret until his birth, but given the circumstances, we really want him to have his own identity and feel more real to those praying for him. So, if you could please pray for baby Jonah Kent Young, we would really appreciate it.