A new year

Happy 2010. A new year, a new decade, a chance to start fresh, a chance to renew your resolutions, a chance to follow your dreams...a chance for hope, and a chance for healing.

I've now celebrated the 3rd birthday of my miracle babies...the ones as I say that "weighed about as much as a pack of hamburger meat" (and not the family size package) when they were born. Each year I look back at the images of them each weighing about a pound and a half, so fragile in every sense we couldn't touch or even speak to them. To see my survivors now is to KNOW there is a God and to KNOW there is always hope no matter how dark or how bleak the circumstances.

Of course this also means I've celebrated another birthday without their sister, without the third little girl that is supposed to be blowing out candles, without my third daughter who should be squealing with delight after tearing open a beautifully wrapped package containing a new hand sewn baby doll, or her very own baking tools, or a trunk full of princess dress up clothes. I bought all three girls a card for Richard and I to write notes that maybe one day they'll open up again and read...the fact that Zoe's card is only read and only kept by us makes me sad. I know on some level she always knows what's in my heart and in my thoughts and I don't even really need to write it down for her, but writing it down helps. It helps me keep her included in her birthday, it helps me keep her alive in our family.

We've also spent another Christmas without her. I tried to think and think of something I could do to keep her an active part of our holiday and so I decided that each year she would give her sisters a personalized ornament. They can choose down the road to keep it for themselves or I can keep it as they grow older. This year's ornament was three cute snowmen sitting on a sleigh. I'm hopeful that this will be our new tradition and that it will be something they'll look forward too each Christmas morning..."what ornament will Zoe send from Heaven this year?"

I hope that little traditions like this will grow over time and become a way for us to keep Zoe ever present in our holidays and family celebrations. It is these small acts and gestures that bring me comfort in some small way each day. I still have my locket that I wear just about every day. I still light her oil candle every day. And I of course, I still miss her every single day. But I do believe I am learning to live with the loss. This loss that is at times incredulous to believe, I really do stop and look at her urn sometimes in disbelief that she is “in there.” It’s hard, even two years later, to wrap my mind around that. To know that she was here, and now she’s not. Avery and Lily’s portraits keep changing, but Zoe’s is forever frozen in time.

Each of my girls have gifts inside of them, special little nuances that they share with us, and insight into our world that is beyond my comprehension sometimes. They honestly leave me dumbfounded at the things they can understand and sequences they can put together, and they’re only three years old…and did I mention they only weighed a pound when they were born?

Zoe’s light continues to shine for people, especially through what has now become her signature ladybug icon. Friends and family tell me all the time about a random ladybug that will pop up in their home or in their car and they always tell me that seeing a ladybug makes them think of Zoe and makes them smile. So even from Heaven, two years after her death, Zoe is still making people smile and bringing a bit of joy to everyday life.

This morning I was playing “From the Inside Out” by Hillsong United, it was a song we sang at our old church that Richard and I both love. In fact my friend Alice had sent me a voice message from church on Sunday when they were singing it. She said as soon as they started singing she felt this instant connection to us and had to try and record it and send it to us.

Lily was in the living room fully engrossed in pushing her doll in it’s stroller and taking it to the grocery store. All of sudden, she dropped the stroller and walked into the kitchen, with her head tilted to one side and asked “What’s that I hear Mommy?”

“Oh, that’s just music I’m playing.”

She then says “from where?” “On my computer” I reply.

Then she says “Is Ayice there? And Miss Yisa?”

My jaw dropped…Alice our friend I mentioned above, went to church with us almost every Sunday and played the keyboards about once a month with the church band. Miss Yisa (Lisa) is the pastor’s wife. Did my 3 year old actually just connect the song she has not heard in at least 3 1/2 months to the two most important people at church besides Richard and I? Amazing, right?

Then there’s Avery who tells me “No Mommy, I do not yike ham and cheese. Actually I like chicken nuggets today.” Or she says, as we’re sitting outside during a recent sunny afternoon “Being outside is fun. It would be a wonderful day if Abby was outside too.” (Abby is our dog) Then she said to me “After our nap we could take Abby for a walk. That would be a great plan.” Did I mention Avery just turned three?

I had to laugh today when our new pediatrician asked if they were talking in paragraphs yet. I thought “Paragraphs? More like dissertations!”

They’ll start preschool in the fall, which I can hardly believe, so these are my last few months of having them at home with me every day. Yet another reminder to cherish each day, even when it seems these delightful little girls have been overtaken by some wild animal instinct!

I recently read a blog post by MckMama that has now become my daily mantra. She wrote about how when our kids grow up and leave our house and live their own lives, we’re going to miss precious moments like wrapping their wet little bodies in a towel after a bath and singing to them. She said, very simply, “I’m gonna miss this.”

So every time I start to feel myself getting antsy to get the girls in bed so I can go relax downstairs with Richard I now say “I’m gonna miss this” and it makes me slow down and enjoy the moment we’re in…because all to often it is fleeting. When Lily wants to run around crazy for “three more minutes” as she often tells me, I think “ok, sure, why not?” Or when Avery says to me “Let’s rock in the rocking chair” when I’m so tired and we’ve rocked three times already, now I say “I’m gonna miss this”. And it is so true. Soon enough Avery won’t ask me to rock in the rocking chair anymore. Or when they’re “helping” me cook and flour and sugar and milk are going everywhere…there is no point in getting upset about the mess…they’re learning, we’re having fun, it’s no big deal to clean up a little or even a big mess…because like MckMama said “I’m gonna miss this.”

And most importantly for me right now… when I miss Zoe, when I wish she was here, when I wish I could squeeze her tightly and tell her I love her…I can’t miss this life with Avery and Lily. I can weave Zoe into it in ways that feel right for us, but I can’t remain mired in my sadness at the expense of these rare and precious moments with Avery and Lily. I can’t afford to lose my life with these girls in addition to Zoe’s life that we have already lost.

Zoe wouldn’t want that, she wouldn’t want that at all.

Pure joy

Pure joy...look at those faces, those smiles, the love just oozes out of the photo.

What a wonderful moment with my girls, my sister was able to capture.

Zoe's second angelversary is less than a month away and I've been trying to think of something to do that will truly honor her memory.

I think this picture sums it up.

There doesn't need to be a grand gesture; Zoe wasn't one to make grand gestures.

We simply need to live joyfully, love deeply, and laugh a lot.

Treat every day as a precious gift.

Don't let the worries of life make you miss moments like the one captured above.

Quite simply, as my husband has always told me, if we live each day the way Zoe lived each of hers, then we will truly be honoring her life and her memory.

(I just need some reminders every now and again. Thanks Aunt No-No for this precious picture.)

Heading home

Sunday night and we'll be packing up and making our trek home tomorrow. Did I mention that Richard came down with the flu? He did. He has spent the last two days quite sick but thanks to a Tamiflu prescription I think he's going to survive. The question is, will I? So far I've skated by as we've left a path of destruction in our wake...my mom, sister, and stepmom all got sick thanks to us. My dad has been fighting it off well and then my poor husband was completely quarantined to an extra room upstairs. I literally wore a mask and left things for him just inside the door.

At any rate, we're all under one roof, a home room, not a hospital roof. Avery was discharged yesterday afternoon and has been doing great. She and Lily were so happy to see eachother, they almost didn't know quite what to do except stare at eachother and smile. Both are working through the last week emotionally in very different manners.

Avery is definitely more clingy, not wanting me out of her sight for even a moment. She needs lots of reassurance that she isn't going to be left alone, or I should say, without me. She wants lots of kisses and cuddles and even if she's off playing somewhere, if she comes back into the room where I was and I'm not there, she gets a bit worried for a moment. The fact that daddy has been quarantined has left her a bit distraught as well. When he did venture downstairs this evening she literally fell on the floor and cried when he couldn't pick her up.

Lily on the other hand is acting out in anger, which I completely understand. She's had complete loss of control with strange people poking her and proding her, she felt terrible, and then even when she did feel good she couldn't get up and walk around the halls because we were in isolation. Due to her sensory issues she's usually quick to get upset about things like her waistband not being at just the right spot below her belly button, or the seam on her sock not laying perfectly across her toes, or her sleeves not being rolled up exactly right. These things have continued but have been stepped up a few notches and the cries that accompany the anger and frustration that ensues is blood curdling. She, like Avery, only wants me...so when they're having a dance party with Grandpa and Birdie I take that as an opportunity to take I shower. I never try to sneak away so I'll tell them what I'm going to do thinking that by the time they're done dancing I'll be out. You can imagine how well that went over!

The night Lily got home from the hospital we had her in the tub. My dad has this little bucket with tub toys in it and the bucket was "the hospital." She'd take the toys (all fish and dolphins and such) and say "you're sick, go to the hospital" and she'd throw them in the bucket. Then she'd say to the ones in the bucket "you're still sick you can't come out." And then she'd dump the whole bucket out and say "you're better, bye bye." I'd say that paints a pretty clear picture of what's going on in her head. I just need to find some ways to help her work through this. I don't want to "discipline" her through it but I also don't want to set up a pattern of "if I get hurt and I keep screaming I'll always get what I want." It's a delicate balance and one that I hope I don't screw up!

So, big sigh.......

What a way to start 2010. Here's to hoping things only get better! On the bright side, it could have been a lot worse and I am thankful no ventilators were involved and we only spent one week in the hospital. I'm praying for all the families out there with children who are sick and fighting off any number of illnesses. I pray that God will give the parents moments of peace and rest amidst the worry and as my friend said that He would "breathe the breath of life into their lungs."

Three days later

The above wasn't exactly what I had in mind for our family portraits!

We're 3 days past my last post and Lily has been home for about 3 hours. The last couple of days have been eventful. After my last post I went back to the hospital so Richard could come back to my dad's and spend time with Avery and I could go be with Lily. Well, all through the night we were talking and texting because he was very concerned about Avery. Like Lily, her cough had worsened, she was running a temp, and not sleeping well. He tried a million different things to help make her more comfortable but nothing seemed to work for any length of time. Since he had not been with her or Lily for the past couple of days he didn't have a baseline for comparison of her state of illness.

There is a constant battle that wages in my head...take them to the hospital if they need it...but what about all the scary germs and bacteria and viruses they can catch on top of what they have and what if what they have isn't really a big deal anyway, but you took them to the hospital and now they're even sicker than they would have been? Sound familiar? Especially to us preemie parents who are repeatedly told "Whatever you do, keep them out of the hospital". Granted this is told to us when they're infants because they are so immuno-compromised...but you know, it kind of sticks with you. And when you've lost a daughter once before, any illness that teeters on the edge of "serious" takes on a whole new level of meaning. Before Zoe died I never really considered the flu or pneumonia as being something that could kill you. I knew they could be serious...but it wasn't the flu and pneumonia that killed Zoe...it was the secondary infection she contracted while IN the hospital. Hence, our internal battle over ER visits, etc.

Anyway, I spoke to Richard after the docs rounded on Lily in the morning and he told me I needed to get to my dad's as soon as possible so I could evaluate Avery's condition. I pulled into the drive, walked straight into the living room to find her on the sofa, pale, barely able to keep her eyes open, sweating, and coughing terribly. I immediately said, "pack her up, let's go." So off we went to the ER, my third trip in four days!

I explained to the nurses aid, the nurse, the intern, the resident, and the attending that Avery's sister was upstairs with the same symptoms and we had already lost one daughter who initially presented similar symptoms. They appeared to listen and respond compassionately, but I could tell in the way they were talking to me that simply because her pulse ox reading was 98-100 they didn't run a viral panel (even though I requested it), didn't do a chest xray (because she was moving air throughout her lungs), didn't see the need to do any bloodwork because she didn't have a really high temperature. I seriously thought I was maybe speaking in a foreign language because I kept telling them "her sister is upstairs, she presented the same symptoms just two days ago." I was even secretly praying Avery's sats would drop a bit so they'd at least seem moderately concerned.

An intern who was on the team following Lily came down to talk to us and let us know that Lily's viral panel finally came back...she was flu negative, but RSV positive! RSV positive! After the last 2 1/2 years of extreme paranoia and hibernation during the fall and winter when they were most vulnerable, now, at three years old she has RSV. She then said in regards to Avery: "We'll do whatever you want as far as admitting and we can certainly keep her just to monitor her." I told her that yes, I felt she needed to be monitored and so she was admitted.

Prior to my leaving Lily that morning, I spoke with the other intern following Lily and told her about Avery's symptoms and clearly I became upset just under the emotional stress, lack of sleep, and worry of it all. Thankfully she relayed this information to our attending who called down to the ER and explained Lily's course, and that Avery was probably at the beginning of her dip and would most likely need oxygen support and fluids even though at the moment she "seemed" like she could "ride it out."

We were lucky to get Avery in a room right next to Lily and for some reason, even though I had two girls hospitalized, I felt better knowing we were all in the same place and they were being monitored. I have to say that I was terrified. Both Lily and Avery, at the peak (or should I say valley) of their illnesses have never (at least not since birth) been so sick. To see them barely able to open their eyes, pale and ashen or flushed with fever, unable to move their own bodies....it was very scary. And again, I could not help but know in the back of my mind that yes 1/2 a liter of oxygen is minimal, but I have seen how quickly that need can climb and how quickly a virus or infection can overtake a person. Not to mention those darn monitors...they are the same monitors from the NICU and the PICU and that dinging noise when your child desats is ingrained in my memory forever. And there's that soap. That superbug killing soap that smells like no other soap on the planet. It is so antiseptic, the scent immediately brings me back to the NICU with the girls and back to the PICU with Zoe. I just kept thinking in my head "Seriously? We're doing this again? With both of them? Really?"

Avery did end up needing oxygen and is sitting on just under 1/2 liter now, down from .9 liters which is great. Like Lily, she seems to need most of her support while she sleeps. If she can sleep comfortably with a little oxygen support then the hope is that she'll feel better in the morning and her body can heal if it isn't having to work so hard at just breathing! Very similar to when they were in the NICU and would have to go back on the vent or back on the oscillator...the thinking was the same, let them rest and not work so hard at breathing so their bodies can repair and grow other parts that need help.

Several things have made this experience different. We are in a different hospital where they clearly have a set of standards by which the physicians are trained in dealing with the parents. All of our doctors, the attending, resident, interns, med students, nurses, even nurses aides have all been very approachable and readily available to answer our questions. They have not once (except for in the ER with Avery) appeared to dismiss our concerns or questions. I have appreciated too that they have erred on the side of caution. As Lily's second set of ER docs said to us...there is no explanation for her clinical symptoms so we need to watch her. Let's be conservative so we don't miss anything.

We are surrounded by family, just like we were in Atlanta, but this time we have not been afraid or held back in asking for what we need by way of support and help. Even if it just means bringing us coffee and breakfast in the morning, which my dad has done faithfully each and every morning this week. We have taken care of ourselves, trading off with the more critical child, and making sure to eat throughout the day and rest whenever possible. I think I've finally learned that you really do have to take care of yourself in order to be the best parent for your child. Even if that just means taking 45 minutes to walk around the lobby of the hospital to get out of those confining walls of the hospital room. It doesn't mean I've abandoned my child, it means I needed a breath of "fresh air" and now I can come back and be attentive, alert, understanding, and loving.

But the most important difference is my relationship with God. When the girls were in the NICU we were surrounded by well wishers and emails full of prayers, the same held true after Zoe's death and this current, overwhelming show of support is infinitely important and carries us through our sleepless nights and worry filled days. What has made it different this time is that my faith in my relationship with God has grown significantly over the last three years and so when someone tells me they're praying for me I believe that they are. I don't take it as just something they're saying because it seems appropriate. I believe that they are stopping whatever they're doing at the moment or before they lie down at night and truly lifting our family up in prayer. As one dear friend said "I am asking the Lord to fill Avery and Lily's lungs with the breath of life."

In Philippians 4:6-7 it is written: "Be anxious for nothing, but in everything by prayer and supplication with thanksgiving present your requests to God. And the peace of God, which transcends all understanding will guard your hearts and your minds in Christ Jesus."

I have felt a growing sense of peace that we are being held and carried by God throughout this week. I have somehow felt alert and rested when the clock really says I shouldn't feel that way. Amidst all my worry and my flashbacks of our terrible experience of losing Zoe, I have felt a sense of confidence that Avery and Lily will pull through this successfully. Even in times of deep sorrow and tragedy the Lord has continued to provide for us in all manner of ways. In this instance we are in a hospital environment far superior to the last experience with doctors that understand our history with our girls and take that into consideration when treating their patients. This is truly Family Centered Care at its best! We have been continually reminded by this staff what miracles they truly are to have been born at 25 weeks and for this be their very first rehospitalization! It really is remarkable and I am so thankful for that. I am thankful that they are three years old and having to deal with this instead of being one or even two years old. They have more reserves built up and as they showed us all those months in the NICU...these girls are fighters!

I believe that God and Zoe have been and continue to be with us at every moment of each and every day. Sunday and Monday were difficult, I was so worried about Lily; having never seen my feisty little lady so lethargic and listless. Her condition was such a contrast to her normal persona that it really frightened me. One of my fellow bereaved/micropreemie/multiples moms wrote on my Facebook wall "look for your ladybug signs" which made me smile. That very night Lily's night nurse walked in and said "Hi little ladybug." And the first ER room we were in with Avery had three little ladybugs painted on the wall. I took those as my signs from God and Zoe that they were with us and everything was going to be ok. I've also had a few friends just in the last couple of days write to me to tell me that as they were praying for us they looked over and right next to them was a little ladybug crawling around.

So here we are, Thursday night, Lily is peacefully sleeping in a bed where she isn't hooked up to a monitor (slightly disconcerting for me after getting used to those darn monitors all over again, but nevertheless a vast improvement) and my last report from Richard at the hospital was that Avery said "daddy we're having a slumber party so I get to watch one more movie." I am so full of gratitude for all that God has provided in my life. Through all the crappy things that have happened in our family, we are truly and eternally blessed by a God who loves us infinitely and unconditionally. He has placed these precious lives in our hands...not to take care of all on our own, but to care for them through His wisdom, His grace and His love and to know that when we truly believe in Him, we walk in His presence each day, every step of the way.

Never having been apart for more than a few hours
Avery and Lily were allowed to have a "play date"
It had been 4 1/2 days since they last saw eachother!

Avery actually looking more perky once they gave
her a little oxygen support

Lily was so ready to get out of the hospital
She was even trying to retape her IV herself!

Not what I wanted to post

Well, this is not the post I was working on for my Happy New 2010 post...that will have to come later as Lily was admitted to the hospital over the weekend.

We've been traveling for the holidays and she started off with a cough and low grade fever. This persisted and the coughing got increasingly worse over a couple of days. One night her breathing seemed rapid to me and again her low grade temp was still hanging around. We took her to the ER and they looked her over and made a clinical diagnosis of the flu and sent us home with Tamiflu.

This ER experience was much better than my previous experience when I first brought Zoe in with her initial symptoms which were very similar to what was going on with Lily. That particular doctor said "Why are you here? She has a cold, give her Motrin." We all know now how that worked out for us! These doctors were very different. I told them immediately about what happened with Zoe so they would understand and hopefully be a little more sensitive than those previous doctors. Their reaction was much different. They said "Eventhough she is an overall healthy 3 year old we still consider her high risk and would like to put her on Tamiflu as a precaution. If anything changes at all please bring her back." Their treatment of my concern was so much different and I felt confident they had evaluated her thoroughly.

The next day she got increasingly worse throughout the day. The coughing was non-stop, she was very lethargic in the late afternoon, she stopped eating and drinking, the low grade temp would not go away, and then she started breathing irregularly. So we went again in the middle of the night to the ER. They did a chest xray, bloodwork and EKG which all came back normal. Since they could not pinpoint the cause of her respiratory status they decided to keep her for evaluation and to make sure she stayed hydrated. So, here we are, day 2 in the hospital. She's needed a bit of oxygen support and fluids. My husband, who was back home last week working, drove 12 hours straight through to get to us. He was able to stay with her last night so I could come back and spend some time with Avery, who, as you can imagine, is a little distraught about not having her mommy, daddy, or sister around. Thankfully we're with family so when I need to be at the hospital she is in kind and loving hands. She was pretty happy when she realized I came back last night and has definitely had a little pep in her step this morning.

The doctors have not yet rounded on Lily but my husband said she had a good night, slept fairly well and they are trying her off the oxygen this morning. I'm not sure that she's had anything to eat or drink yet. Yesterday when her dinner tray came with her two favorite things...mac and cheese and chicken nuggets...she said "No! I don't want anything!" I told her the doctor wanted her to eat and drink so we could go home. She ate a tiny macaroni and took a teeny sip of water and said "I'm ready to go home now." Cute but oh so pitiful when I had to gently explain that she had to eat and drink a bit more than that.

So....we thank you for all of your prayers. This is all too familiar territory for us. I know Lily is stronger and older than Zoe was, but at the same time I now feel like I'm living in the flashbacks that I've battled for the last 22 months. I wish I didn't know as much as I did sometimes. I wish I didn't know how quickly stable can turn into critical. And I'm trying so hard to remember the things I "wish" I had done or said when we went through Zoe's ordeal so that I don't end up with even more regrets.

Lily is in very good, competent, and capable hands at a top notch children's hospital and I do feel confident she'll be back home soon. I'll post another update when I know more.