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!


Anne, Eliza Grace's mom said...

I do so hope the girls are on the mend and will keep you and them in my prayers. Remember to take care of yourself so you can take care of them.

The Hull Munchkins said...

Hi Keira,
I just ran across your blog and had to post a comment. Your girls are just gorgeous, petit little cuties. I'm sorry they are sick.

I am a fellow micro preemie mom. My dd was a 23 wkr, she is 6 yrs old now with multiple special needs. I always love reading about other preemies.

I'm so sorry for the loss of your sweet Zoe. From the pics and video she looked like a doll baby.

Your post brought back memories of my dd having RSV 3 yrs ago. It was scary. She was in PICU/peds floor for 10 days and on the vent part of that stay. yuck.

I will pray for your girls to get well soon! Hang in there.


All time favorite video of Zoe!

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Bible verses that comfort me

"Yes, we are fully confident, and we would rather be away from these earthly bodies, for then we will be at home with the Lord."
~ 2 Corinthians 5:8

"Let the children come to me. Don't stop them! For the Kingdom of God belongs to those who are like these children....Then he took the children in his arms and placed his hands on their heads and blessed them"
~ Mark10:14 & 10:16

"...those who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint"~ Isaiah40:31