A little cervical drama

The reality of a high risk multiple pregnancy has definitely become very real in the last couple of days...

28 weeks

Yesterday I went in to see my OB for what the nurse thought was a UTI or some sort of viral illness. For two days I'd been barely functioning- extremely tired, nauseous, achy. Nothing that really screamed "GO TO THE DR NOW!" but after talking to the nurse, she wanted me to come in. I thought I'd leave my obligatory urine sample in the metal pass through box and be on my way. But the medical assistant talked me into waiting for some results, getting my weight and vitals done. After talking to the doctor, they decided to do a check of the babies' heartbeats and a cervical check.
It seemed a little unnecessary to me, but I went along with it. My BP looked great, no fever, good hydration status and the babies' were being all crazy with great heartbeats. But my cervix on the other hand, was not so well behaved. There were significant changes from the exam a week ago, and this kind of sent the staff into a bit of a frenzy! Unfortunately my regular OB is on vacation this week (how dare she while I'm this close to the end of my pregnancy?!) so I was left in the hands of a doctor that barely knows me, although I had no doubt that I was still in good hands.
Because there are two little people living inside me, I had to go to the hospital to be monitored because the clinic doesn't have a multiples monitor. Just being told that I had to go the hospital freaked me out and I cried the whole way over there. Plus they made me ride in a wheelchair so everyone was looking at the gigantic lady crying in the wheelchair the whole walk over there...
Once I arrived in the L&D triage area, they got me hooked up to the monitors and my mom arrived shortly after that. We started with the millions of questions and Dave arrived about half way through those. During the questions, the nurse had to keep her hand on my stomach to see if she could feel any contractions that the monitor may pick up. It was a little awkward having a stranger's hand on my stomach for 20 min., but the nurse was awesome and agreed to let me go to Mexico this weekend (I'm not really going- just dreaming) as long as she could come along with some other nurses to monitor me and the babies. I agreed.
Anyways, the babies looked great on the monitor and I only had one contraction the whole time and didn't even feel it. In the end, it was decided that because of the significant cervical changes that I would be given the first dose of betamethasone. It's a steroid that is used to help mature the babies' lungs in case of an early delivery. They also put me on bed rest until my appointment on Monday. Not exactly what I had hoped to hear, but it could be worse. I received my second and last dose of steroids today and spent some more time on the monitor.
They did a swab to test for the presence of FFN. If this is present then it is an indicator of early labor. It doesn't mean that you will for sure go into early labor but it does help the physicians make good treatment choices. Unfortunately something happened in the lab and they weren't able to use my sample. After speaking with the on-call doctor we decided that since I was going to be on bed rest anyways until my next appt., there was no need to repeat it until Monday.

So......

Here I sit.

I'm not really made for this sort of thing- I'm already restless! But if it gets us big fat healthy babies then I'll do it. Today, I am 29 weeks. The minimum goal we are hoping for is 32 weeks. That's only three more weeks. I'm demanding that the babies stay in until AT LEAST that. Dave has offered to buy me some duct tape if I think that would work- I'm considering it- after all, it works on everything!
WHEN we reach 32 weeks, we'll tack on another week to our end goal and continue to do this until at least 36 weeks.
I still have many things on my to-do list but I'm not really able to do most of them. It's kind of out of my hands now. And I think that accepting this part of a multiple pregnancy is the hardest part. I've done all that I can- eating well, resting when I need to, listening to my body, downing my handful of supplements every day. But in the end, my body is already thinking that it's almost full term. And that, I can't do anything about.
I have a lot of mommy guilt when it comes to Max. I don't want him to think I am a crappy Mommy who doesn't want to do everything with him that I used to. Because that's not true at all. I love getting him ready in the morning, carting his heavy body up the long staircase just because he wants "mommy carry" and walking him up to the park. I know it won't last forever but Max has finally started to get to the point the last couple weeks where he asks for us to do certain things with him or for him. And that is a HUGE deal for Max. I worry that if I'm not able to respond to his requests and reinforce that behavior, that he won't come to me for things.
Thankfully, we have awesome parents, grandparents and friends that are more than willing to help us through my "useless" stage. I also know that Slinky and Bo-Peep (the babies) have a big sister watching over them everyday. All along the way, Ellie has given us little signs that she's here and that she's protecting her little brother and sister. Yesterday, on my way home from the doctor, my mind was racing with all sorts of concerns. In order to keep from losing my mind, I turned up the radio. And there is was- "The Rhythm of Love." I haven't heard it in weeks, but she most have known I needed it. I did. And it did make me feel so much better.

For such a little tiny thing, a cervix can cause a whole lot of drama!

So please send up your prayers, send us good vibes, good thoughts, do your voodoo thing, or whatever you do. We need to keep these babies in for at least three more weeks and hopefully 7-9 more weeks!

My Adorable Nephew, Layton!

 It's time for me to do my job as an Auntie and brag about my new nephew...

 On February 11th at 4:36 am Layton Charles was born weighing 6lb 15 oz! And he is perfect! A head of dark hair, tiny fingers and big beautiful eyes! He only looked like a newborn for a couple of hours, by the time we got to see him later that day he was, like I said- perfect.

Chrissy, Dave's sister, did an awesome job getting him here! She was induced on Wednesday and didn't have him until Saturday morning. Layton is very lucky to have her as a mommy! And of course, Travis as a daddy!

Max was starting to get sick the day his new cousin arrived, so he stayed down in the lobby with Grandma while Dave and I got to snuggle Layton. But then Dave and I got sick so we haven't been able to go see him again. It's killing me! I feel like he's going to be walking and talking by the next time I get my hands on him! And I'm pretty anxious to see what Max thinks of him!

Layton's Mommy gave me full bragging rights and permission to share some of his newborn pics- which I will happily do because he is seriously too perfect not to share...

Little Sparrows Photography

Possibly the cutest picture ever!

 

The Cemetery

It's maybe a mile from where I'm sitting now... I chose this specific therapy location not because it's closest to our house, but because it's close to those rolling green hills that just a year and a half ago meant nothing to us. Two days a week, I'm so close.

At first, I wanted to go there. I mean, as much as a mother can want to go to a place like that. For whatever reason, I felt a need to be there. To go and talk to her and make sure that as often as possible someone was there for her. At first, if I could have made sure that someone was there every day, I would have.

But lately, my feelings towards that place have changed. I hate to think it, I hate to say it- it feels like the words burn my mouth. But lately, it feels like an obligation. The amount of guilt that accompanies this thought and feeling is indescribable. What kind of mother feels like it's an obligation to go visit the place where her daughter rests?
I used to feel like I had to go there to feel close to Ellie. But I don't feel like that anymore. I've always felt that her spot is just where her body is, it's not Ellie there. The Ellie that we loved disappeared from a PICU room on October 24th, 2010. Sometimes, I still have a hard time wrapping my mind around the idea that it's really her body in that casket anyways. The baby that was in the casket when it was closed, did not even resemble our sweet girl... Her happiness, her joy and her sweetness are not buried in the ground.

It might sound weird or even a little hippie, but I really believe that the essence of our Ellie left her damaged little body and spread itself out into the world. And we see little pieces of it all around us...

We see her beautiful face in the pink and purple sunsets and sunrises.

We are reminded of her little attitude whenever a light burns out in our house- which it does quite often!

We see her joy and sweetness reflected in the kindness of others who so willingly contribute to Ellie's Light, and by those strangers who reach out and let us know that Ellie will not be forgotten.

Ellie isn't here anymore, but she is all around us. She is on my mind all day, every day. And lately, the cemetery just serves as a reminder of what we are missing. It's so obvious in our every day life and I don't like going to the cemetery and staring down at a beautiful headstone that bears my daughter's name.
Surviving the loss of a child is a conscious decision. Every day you have to choose to keep going on. And for me, that's easier to do if I focus on the happy memories and reminders of who Ellie was and what she is still doing even now as an angel. I really feel like going to the cemetery only sets me back.

Am I in a little bit of denial? Possibly. Am I trying to protect myself from things that I don't want to think about? Definitely. Is it selfish? I'm not sure...

I really don't think Ellie cares that I don't go to the cemetery as much. I still take care of her spot and make sure that decorations are placed for each holiday, but I don't just go out there anymore. It's a hard thing to put into words... I want to want to go out there- for Ellie. But I don't feel like I need to. There's a lot of guilt... It's hard to be at that place with that headstone that bears her name, but it's hard not to be there too...

As time goes on, I'm sure my feelings towards the cemetery will evolve. And hopefully, eventually, I can come to a place of peace about whatever feels right... Either way, whether I'm there or not, I miss my girl. I love her. And I am constantly thinking of her...

Our affairs

There's nothing to get you thinking like "getting your affairs in order."

Before Ellie was born, we had papers drawn up that would determine guardians if something happened to us, but couldn't sign them until she was born... After she was born, life got crazy and we didn't ever do anything with them. Then life really got crazy- Ellie died and we learned Max may need special care for his whole life. Now that we are expecting the twins, we really need to at least get guardianship papers done drawn up and SIGNED. Well this just opened up the flood gates and we decided just to go ahead and do our Power of Attorney, Health Directives, Will and a Special Needs Trust for Max.

The paperwork is extensive, tedious and repetitive. Our Friday night excitement last week was going over our health directives. Dave and I definitely had different takes on how detailed we wanted to be with the paperwork. Dave's responses were pretty generic but I want to be very specific on what I want in certain situations.

Generally speaking, I think I've always been more of the type of person that doesn't believe in prolonging a "life" that is sustained only by machines. I truly believe that this is an individual belief and that each situation is different, calling for a different solution... But for me, I don't want a life spent in a hospital or relying on machines. If I can't reasonably enjoy life- I don't want it.
And this is fairly obvious when you look at my responses to the questions. Many of them have DNR/ DNI written in them, as well as comfort cares. I kind of felt like an old lady filling out these forms instead of a 29 year old. It's not that I don't want any medical intervention at all, I just don't want it if it's not going to change anything. I say this, but then I think of what we put Ellie through...

At one point a doctor taking care of Ellie said, "we've through everything at her but the kitchen sink. And if I thought that would work, I'd throw that in too." Ellie had almost every type of blood product available- she almost tapped out two hospitals worth of type specific blood. She had her own intensivist. More specialists than I can probably even remember. When we made the decision to go ahead with ECMO, we were told that there was less than a 1% chance that it would save her. It was that, or nothing. She was going to die. But we could try this one last thing. I don't even really think that we discussed it. Of course we would try.
Knowing what I know now, and having the understanding of what was really going on in her body at the time, I'm not sure that I would make the same decision. ECMO never really had a chance of working. Not for what was wrong with her. And it took a terrible toll on her already damaged body. If we had decided against the ECMO, we would have had several more hours with her. Holding her. Loving her.
But who knows, maybe I would still make the same choice. Even if it's only a 1% chance, it's still a chance. And when you are making it for your previously healthy and happy perfect nine-month old, that chance is all that matters. When we woke up that morning, we had no idea what we were facing. Even so, there is no way to prepare yourself for these types of decisions.
I think that when it's a child you just try for as long as it's reasonable. But even though no parent ever wants to say that its ok to stop treatment and just provide comfort until it's time to say goodbye, sometimes that point will come. For us, that point was obvious. Painfully obvious. It's not always that obvious- with children or adults.

After working on the oncology floor in a pediatric hospital, I saw many families struggle with these decisions. I've taken several classes on the dying process and bereavement. There is no clear cut way of doing things. So I guess, as an adult, it's a "nice" thing to do for your spouse and family- you know, to tell them when they should just let you die. Really, in the end, you are at their mercy. If you don't have the ability to speak for yourself, it's out of your hands.
It's the same with the whole cremation or burial thing... For us, we already have our burial plots purchased. Not exactly something that all healthy 28 year olds purchase, but we wanted to be with Ellie. So there's that... Getting your affairs in order as a young mom is definitely a little depressing and slightly overwhelming. But I'm not afraid of dying- I don't want to leave people behind, especially children who need a Mommy, but if something catastrophic happens, it happens. So I guess we should just write it down for everyone. Plus, when you already have your burial spot picked out- why not?

So for anyone that may someday be standing by my bedside making all sorts of big decisions, remember this- unless I can reasonably enjoy my life, just let me go be with Ellie. 

My Computer is annoying

I have been mostly absent the last couple of weeks because every time I put pressure on my keyboard or move it, it shuts off.... Definitely doesn't sit well with my pregnancy hormones! So I've just been avoiding my computer lately!

Anyways, we did hear back from the gym that was rude to Max and his friend, A. A's mom and I were a little confused by their response. The owner didn't seem that apologetic for the rude behavior and basically stood by their decision that children either need to leave the floor or participate in circle. I understand their reasoning, but think that they need to make it obvious to everyone, at the beginning of "open" gym. Otherwise, it becomes unfair to children that cannot participate. Had we known at the beginning of "open" gym that circle time was required or else we had to leave the floor, then I would have planned to have Max have a snack during that time. But when they wait until a child presents themselves that can't participate, it appears (and feels) like that child is being singled out due to their disability. And this doesn't sit well with their moms!!
The owner offered us a free pass, so I think we will go back again and see how things are. Regardless of how they were treated- they didn't know it. And they really liked it there. So we want to take them back... hopefully they've made expectations clear from the beginning.

I've been busy with trying to get things done before the babies arrive or I'm just too big to do anything! I am 23 weeks, 4 days today and I can't believe how fast things are going! I am definitely feeling an urge to get things done and done soon!! The nursery is getting painted this week and as soon as it's ready I'll show some pictures!!

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Ellie's Light

Fleece Blanket Drive in honor of Ellie's 2nd Birthday!

We will be collecting new fleece blankets for the Children's Hospital until Feb. 15th. If you would like to donate one- click HERE for the details!!

Thank you!