Monday, July 30, 2012

The day it all went to hell

The past two days have been emotional for me. Unfortunately, I think it is going to continue for the next 7 weeks. I knew it was coming and I actually expected it to hit harder so I am thankful that is not the case, at least as of yet. But I know it's coming. And I am scared. I really think at times that I am suffering from a bit of PTSD.

I should probably step back and explain a little. As many of you know, we had Naya at home with us for 5 days before she was admitted to the hospital. Those 5 days were hell because she wasn't feeding or pooping but at least, at that point, we didn't think she was going to die. According to our pediatrician (whom we saw 3 times), she was just being a lazy newborn because I had an epidural. Obviously, she is not our pediatrician anymore. I'll get more into that some other time though. That's not what I intended to talk about about right now.

Anyway, so yesterday marked the one year anniversary of the day we brought Naya into the emergency room - otherwise known as the day it all went to hell. I obviously wasn't writing at that point in time and I don't know if I have ever spoken of it but that day was probably the second hardest and definitely the most confusing day of my life. Everything just went so terribly wrong so quickly that even now, a year later, I have a hard time comprehending it.

After we spent the first five days of her life force feeding her and not getting any answers from her ped, I got fed up and insisted we take her to the ER at about 5am on July 29th. When we got there, the ER staff didn't really know what to do. They hooked her up to an IV because she hadn't been feeding and ordered tests and xrays. They asked us a bunch of questions and discovered (after an abdominal xray), that she had a blockage in her bowels and ordered a transfer down to a hospital that performed neonatal surgery. While we were waiting for the ambulance, Naya's bowels released all over me as I was holding her and a few minutes later, she began projectile vomiting bile onto Dan. We later learned that this was probably the moment of her demise, as this was the point where she aspirated it into her lungs causing the pneumonia. It could have possibly been prevented if the ER had inserted a simple NG tube when we arrived (and told them she had been vomiting) but they didn't. The poor kid had all of the odds stacked against her.

When the staff finally got her stabilized enough for the transfer, both Dan and I were pretty shaken. We had no idea what was happening and were more terrified than we have ever been in our lives. I also don't know if I have ever talked about this but Dan actually held Naya in the ambulance during the 90 minute trip to Santa Barbara. I sat up the front with the driver. When we got to the hospital, I held Naya in the ER while they tried to stabilize her before moving her to the PICU. This was the last time we held her while she was still alive. I didn't know it at the time but her stats were dipping dangerously low and she was dying. It took them awhile to stabilize her and they finally got her over to the PICU. There was a flurry of doctors and nurses rushing around, yelling at each other and ordering various things while Dan and I stood there in shock, not knowing what was happening to our baby. She had been fine two hours ago! The doctor eventually had us leave the room in the company of a Chaplin and a social worker. We didn't realize it at the time but we now know it's because she was dying and they were trying to save her life and didn't want us in the way. While we were gone, they intubated her, started her on some drips and rushed her to surgery. It was at that point that they finally told us how critical the situation was and that she might not make it through the surgery. We sat there in shock, sobbing and hyperventilating while waiting for the doctor to come back and tell us whether she was dead or alive. When they came back and told us that she had made it through the surgery, we were ecstatic. We thought the worst was over and that they could fix her. We didn't realize how wrong we were.

I wish I could forget the feeling of walking in to see her and she was hooked up to a million IV's with a ventilator breathing for her tiny, little body. I don't know how many of you have seen what a critically ill baby on a vent looks like but it is one of the most traumatic things to see in the world. Your immediate reaction is to start crying. There is a reason we have never shared a picture of what she looked like in the hospital on it out there. My heart breaks just thinking about her like that. My beautiful, perfect baby girl wasn't supposed to be hooked up to machines keeping her alive. It was a terrible moment that I will never forget as much as I would like to. I am still reeling from it. I don't know if I will ever understand. I don't know if I want to. Sometimes I just want this nightmare to be over. I don't want to relive what happened a year ago everyday for the next 7 weeks. I want to forget but I can't.

Wednesday, July 25, 2012

First Birthday

Yesterday was Naya's first birthday. Sometimes, I think the lead-up to a significant day is worse than the actual day. I've spent the last few weeks shuffling between being extremely anxious, irritable and emotional - all because I knew her birthday was coming soon and I was afraid. Afraid of the emotions that were going to come up on that day, afraid that I wasn't going to do enough to honor her, afraid that I wasn't going to be strong enough to make it through the day. I did but it wasn't easy.

The panic started on Monday evening. I went into labor with Naya around 10pm on July 23 and I tried to force myself to go to bed before then so I would be asleep when that time hit. I took two Tylenol PM (don't worry - they are doctor sanctioned), took a bath and went to bed. I didn't fall asleep though. I sat there and pictured myself feeling those contractions that I felt a year ago. I pictured my water breaking like it did as I laid in the same spot and how excited Dan and I were. I remembered how my contractions started picking up soon after and Dan rushing to get our stuff together and dropping Ty and the dog over at a neighbor's house. I could feel those contractions I was having as he raced to the hospital and lied to me about how close together they were coming. And I cried. I cried because at that point a year ago, I was so excited for the change that was about to happen. And I was so incredibly naive.

The Tylenol finally kicked in and I fell asleep. At exactly midnight, our puppy Buena decided to wake us up even though she has been sleeping soundly through the night for weeks now. I didn't know what to think but they do say that dogs are more observant than humans. Maybe she was here and Buena sensed it - I would love to believe that and I am going to choose to at this point.

We got Buena back to sleep and I eventually fell asleep again with every intention of sleeping in and not waking up until late morning. But my inner-alarm clock woke me up at 6:30. I gave birth to Naya at 7:10am. At 6:30, one year ago, I was getting ready to start pushing. Dan woke up to me shaking and sobbing and we held each other and cried. At around 7, we went outside and sat by our hummingbird garden, holding each other and crying as we waited for her birth minute to pass while two hummingbirds started their early morning feeds.

The rest of the morning passed by quickly as we looked at pictures and video of her and cried. We went and picked up a floral arrangement, balloons and cupcakes and brought them to her grave. We sent cupcakes to the NICCU at CHLA. We also decided to make our contribution to the name gallery by visiting four area beaches and taking a picture of a letter at each one. (This not only made for some beautiful photos and family time but also helped kill time.) Here's what we came up with:

Sand - Pismo Beach, CA

Seawood - Avila Beach, CA

Rocks - Montana de Oro - Los Osos, CA

Drift wood - Cayucus, CA
We actually had an enjoyable time - especially visiting some of the beaches we hadn't gone to in awhile. It was a beautiful day outside and we were able to spend it together as a family.

We got home and were pretty exhausted so we rested with the dogs for a bit, ate dinner and took Chinese Wish Lanterns out to Oceano State Beach to launch. Unfortunately, there was a slight wind so we weren't able to get them to fly but a friend of mine (another grieving mother) went out around the same time at a different beach and also launched one for Naya and her son.

All in all, it was a hard day. I cried. A lot. And I missed my baby and ached for her, more so than I have done in awhile. But I feel like we celebrated her and gave her a birthday that she deserved. We had so many people reach out to us yesterday and remember our daughter and told us how she changed their lives. I am so proud to be her mother and so thankful for all of the wonderful people in our lives that helped make her birthday special and helped us get through it. I don't think I can write anymore through my tears right now, so I am going to leave it at that. Thank you, everyone, for your love and support.

Here's a link to the name gallery again - I am in shock and awe at all of the amazing submissions. Incredible.

Friday, July 20, 2012

In response to the Colorado Shootings

Like everyone else, when I woke up this morning and the first thing that I heard was news of the horrific shooting in Colorado last night at the Dark Knight Rises premier. And again, like many others, I have scoured the Internet looking for news and information to try to make sense of this disgusting and tragic act of violence.

Obviously, we all have the same initial reaction to this news. We wonder how someone could be so sick to commit a crime as atrocious as this. We think about the victims and our hearts go out to their families who are dealing with losing their spouses, friends or (choke) children. We wish we could find a way to help them in their greatest hour of need and respond through prayer, thoughts and monetary donations.

And then, we turn to other means of comprehending the tragedy - blame. I was originally going to talk about all of the posts I have seen chiding parents for bringing their children to a midnight showing of a PG 13 movie but Heather Spohr beat me to the punch and literally took the words out of my mouth with this wonderful and beautifully written piece so I will turn my focus elsewhere - blaming this tragedy on the religious tendencies of this nation.

It has always disgusted me when I hear of various religious groups blaming events on the actions and faith (or lack of) of the America public. Obviously, Pat Roberson and Jerry Falwell come to mind as the greatest offenders. They have both rather famously blamed a number of events (September 11, Hurricane Katrina, the earthquake in Haiti) on feminism, homosexuality and liberalism by saying that God is punishing the United States for tolerating these "lifestyles" by inflicting these tragedies. I have already seen a few statements mirroring these sentiments in connection with this latest shooting.

Rep. Louie Gohmert of Texas stated that the shootings are the result of "ongoing attacks on Judeo-Christian Beliefs." Brian Fischer, a conservative talk show host on American Family Radio, said "We have forgotten God. That's why all this happened" and blamed the Supreme Court for taking prayers out of school. Sigh.

I don't care what your religious beliefs or political leanings are, statements like this do absolutely nothing to help the victims makes sense of this tragedy. And they don't need to hear it - believe me it does way more harm then good. All they are doing is turning a tragedy into a political situation instead of remembering that people died and their families are suffering. I am sure that many of the families (religious or not) are wondering why their God would allow something like this to happen and they sure as hell don't need people telling them that it's because kids don't pray in school or because America is becoming more tolerant of homosexuals. What they need is love and compassion in their greatest time of need. They need your tears, thoughts, prayers and understanding and not your religious or social agendas.

My heart goes out to the victims of the shootings and I send strength and love to their families. You are all in my thoughts.

Thursday, July 12, 2012

Prep Work

While this has been the longest pregnancy known to man (at least that's what it feels like to me!), Dan and I haven't really done much to prepare for this baby. I think a lot of it is because of fear. We did the whole preparing for baby thing a year ago and we ended up with a room full of baby stuff and no baby to use them. The thought of setting something up for a new baby is very daunting and scary. We can't go through this again, I really think it might kill us.

For the past two weeks or so though, I have relaxed a little and let myself consider that we might actually have a baby around in 8 weeks. I've ordered a few things, including the car seat today, and bought a few outfits and hats for pictures. It scares me that I am jinxing myself with every purchase and I am purposely spacing them out but at least I am doing it. I just have a few more things left on my "have to get before the baby comes list" including a new stroller, carrier and bassinet but that's it. We have decided that we are going to reuse (can I even really say that since she never really used anything) all of Naya's things except for the things with negative connotations or that she directly "touched." The things that hold bad memories for us (her swing, stroller, car seat and bassinet) are getting donated to a local women's shelter and her clothes, bedding, decoration and other personal items such as stuffed animals and certain blankets are going into bins. Most of the clothes we bought for Naya were gender neutral and she never wore them, so we are keeping them for nugget. We will decorate the nursery again after nugget is here and healthy. Everything else is staying because she never really used her stuff - most of it is still in their original boxes. Baby steps.

We also toured the hospital that we will be given birth at last week. Although my doctor is the same OB that I had with Naya, she recently moved offices and I will be giving birth at a completely different and brand new (literally - it opened in June!) hospital. We are very glad about this for multiple reasons - mainly that there is obviously no way in hell we will ever go back to the hospital Naya was born in due to their negligence but also because this hospital is new and a state-of-the-art facility with a brand new NICU. It runs laps around the piece of crap, dirty ass hospital we gave birth in last year. The hospital staff was really great to us during the tour and even let us stay afterward to tour the NICU (We took a tour with a bunch of other people). We have been assured that the nurses will be aware of our situation when we arrive for the birth and that they will do their best to make us as comfortable as we possibly can be.

I also found a new pediatrician yesterday and I think he's going to be a very good fit. I started off by explaining what happened and he listened, asked questions and was very understanding. He recognized what our previous pediatrician had done wrong and told me what he would have done differently. He told me that he understands how nerve-wracking this is going to be and encouraged me to call or stop in anytime with problems, questions or concerns. I think what solidified my decision was that he offered up the fact that he has also lost a child (stillbirth) and that my story really hit home for him. He said that he and his wife also chose to have another one right away and how hard it was for others to understand that the new baby was in no way replacing the baby they lost. Although it's been years, hearing about a child loss always hits him right in the heart and makes him feel like it happened yesterday. He asked how I was holding up and gave me a hug with tears in his eyes. It was a good conversation and I am really hopeful. I just wish I had found him before. I wish I wasn't so stupid when picking Naya's pediatrician. (Ty's longtime pediatrician retired about 6 months before I had Naya and I just assumed that her replacement was fine. Hindsight is everything.)

So, that's where we are at. I am getting anxious now. These next 8 weeks are so are going to be torturous (for a variety of a reasons).

Monday, July 9, 2012

Helping Hand

Over the weekend, Dan and I attended a fundraiser for a local non-profit organization called Jack's Helping Hand that assists special needs and medically fragile children. They couple who started the organization did so after their son lost his three year battle with brain cancer. Since then, they have helped many, many children in our area who are very ill with hospital bills, travel and living assistance (we live far away from a major medical center and the sickest of the sick have to travel at least 200 miles to receive care) and more. The cause was very near and dear to our hearts, as the organization helped us while we were in LA by paying for our stay at the Ronald McDonald House and provided us with a gas card as well as a gift card for food expenses. Since we were both not working and living 200 miles from home for almost two months, this was very beneficial to us both financially and mentally. When your child is dying in a hospital, the least of your worries should be how you are going to pay to stay with them until they pass. This organization allowed us to be there for her and we are very grateful for their support. I wish I could have afford to bid on some of the amazing auction items (one of them went for $25,000!) but we are not quite there yet with our finances (and won't probably ever be unless we win the lotto someday). Can you imagine having the means to spend $25k on one item at a fundraiser? There really are some generous people out there and the world is a better place because of them.

Anyway, like most things in our lives right now, the event was bittersweet. We were very happy to be there but it was definitely emotional for the both of us. Before the live auction, they brought out a few of the kids that they have helped in the past - pretty standard practice at most fundraisers. I, along with the rest of the crowd, shed some tears listening to these kids stories. However, I think my reasons for crying were probably a bit different then most of the other attendees. I was crying not only because of the pain and fear that these poor children had to endure but also because I could really put myself in their family's shoes. I know how helpless it feels to have a sick child. I know how it feels to be watching your child suffer in a hospital and not know whether the next minute would be their last. And I cried because of how lucky these families were because they didn't have to know the pain of watching their child die in their arms and coming home without them. I cried because I wanted Naya to be there with them instead of gone. All of these stories of sick children are not just stories to us - we lived them and unfortunately, ours didn't have a happy ending.

That's one thing that has kind of bothered me with organizations that help sick children and their families - they only ever tell the survivor's stories. I get the reasoning - obviously the stories of death are not as pretty as the ones who survived - but I think it sends the wrong message sometimes. Makes you think that the cases where the child dies are very uncommon when actually, it's the other way around. I've never seen the Ronald McDonald house mention any child other than the survivors on their Facebook page or website but I can tell you that, at least when we were there, half of those families were staying there to be with their children when they died. It's sad and horrible and not at all pretty but it's the truth - believe me, I saw the roses that they put out in their lobby anytime a child passed. They added new ones everyday. But it's never talked about because it's not a pretty subject.

That leads me to my next comment about the fundraiser (and life in general after your child passes away). People get really, really uncomfortable when you tell them you have a child who died. I mean incredibly uncomfortable. Being noticeably pregnant, I deal with this a lot. People always ask me when I'm due then the automatic next question is "is this your first?" Usually, I just say no. Some people leave it at that and others ask how many you have. This is hard and shitty question to answer - do I make them uncomfortable or torture myself by lying? I usually just say I have a 10 year old son and a daughter who would be 1 in July but passed away when she was 7 weeks old. Most people immediately change the subject and I just go with it. Some pretend like they didn't hear me at all. And some react and tell me how sorry they are. But they are all uncomfortable and that makes me uncomfortable. It's really a no-win situation.

We encountered this question a few times at the fundraiser - only this time it was from people asking why were there, along with the typical pregnancy questions. I answered truthfully as I wanted to show them the good that the organization was doing in the community. Yes, our story isn't as pretty as some of the others but this organization helped us in our time of need and we are very grateful. I congratulate them on an incredible fundraiser ($150k in the live auction alone!) and am so happy that they are around to help other families.

If you want more information on Jack's Helping Hand, check out their website. This family is truly inspirational for turning a tragic situation into a positive one and I look up to them as role models.

Friday, July 6, 2012

Splices of happiness

It's amazing to me how bittersweet life becomes after your child dies. The world is such a different place no matter how hard you try to make yourself fit into it again. I think most days I do a pretty good job. I can act normal and wear my mask with the best of them. I am functioning again in my job and am out in the public eye and hardly ever start crying out of nowhere. I know when it's going to start and what my triggers are and then I excuse myself and go in a bathroom stall, cry, compose myself and return to what I was doing. Somedays are better than others and there are even somedays when I can feel happiness at times and "forget." But there isn't a single day that I don't think or cry about Naya and wonder what could have been and I don't think there ever will be. That's just the way it is, unfortunately. You have to find a way to be happy and functioning among the grief because it will never go away. You have to find a way to try and enjoy your life again while realizing that nothing is ever going to go back to "normal."

The last week has been pretty busy for me. My sister came into town (she lives in Kenya) and my best friend got married last weekend. Add in the Fourth of July and work and we were running around. My friend's wedding was amazing. I was one of the bridesmaids so I had a super busy time (that my old and pregnant ass is still recovering from!) but it was fantastic.

She was so absolutely beautiful and it was one of the few times since Naya died that I can say I truly enjoyed myself for an extended period of time. I was just so happy for her and so glad to be there supporting her as she married her best friend. She has been there for me in ways that I can't even begin to describe, especially over the past year (she was in the hospital with us when Naya passed away and I don't know what I would have done without her) and I love her so much. It was wonderful to see her so happy because she deserves it. She's probably going to kill me but I have to post a picture of her and show everyone how beautiful she looked. Love you both Lindsay and Phil.

As I said the wedding was amazing. Lindsay planned out even the smallest of details and they were all beautiful. She even included all of my children in the wedding - Ty carried a sign saying here comes the bride, nugget was inside me and Naya was on a charm on my bouquet.

This made us both cry and I wasn't allowed to look at her after she had her makeup applied but it was absolutely perfect. I forgot to take a picture of the bouquet on the day of the wedding but it still looked great two days later despite the 90 degree heat it endured!

So all-in-all, it was a great day. I had some moments of sadness - it was hard seeing everyone there, happy and celebrating with their children. It just makes you realize what you are missing that much more sometimes. I wanted her there toddling around with the other babies in a little pink dress. Then your thoughts get to you a bit - a wedding makes us think of all the other missed opportunities we will never experience with her. I'll never get able to help her plan a wedding or pick out a wedding dress. Dan will never get to walk her down the aisle or have his father/daughter dance. They are small things but they hurt because when you have children, you look forward to these little things in their future. It's hard to admit to yourself that  those opportunities are really gone.