Seeking the Light - Prayers for Parvana

26/10/2021

26/06/2021

One year ago today we brought our NICU grad home. Parvana was just shy of 5lbs, still swimming in her preemie clothes and I remember being so nervous something would happen and we would have to just turn around and come back.
We had been trained how to place NG tubes, how to manage all the buttons on her AIRVO and her oxygen concentrator. We knew what all the different beeps meant from all the different machines that enabled us to bring her home.
I was just this week talking with someone about how this is how I know how to mother. The way we took care of Parvana was woven into her O2 saturations, what percent of oxygen she was breathing, her feeding being mixed and timed correctly, and on and on. I remember being nervous about her care, but it very quickly became second nature.
We miss our baby. Everything we do, I think this would be so much nicer if Parvana was here. She made our days brighter. She made me better.

22/04/2021

We got away from the city with some friends and really slowed down this weekend. We took walks, fished (I watched people fish), talked, laughed, and reflected on what the Father has done. Even though it was cloudy the whole time and spit rain on us, we came away content.

I think often about the phrase “here I raise mine Ebenezer, hither by thine help I’m come.” Meaning to remember the things the Father has been faithful in before and that He will continue. I’ve been thinking of this especially as we get closer and closer to Parvana’s birthday. Sometimes I let myself go to the what if’s. If she were still here, would she be sitting up by herself yet? Would she have started babbling anymore? Would she be holding things in her hands? And then I stop that runaway train and remember the faithfulness - holding and rocking her to sleep. Going on walks as a full family. All of the many many doctors appointments and the medical jargon that became second nature. These are some of my Ebenezers. Some of my markers of His faithfulness.

Right now, carrying Parvana’s younger sibling, I have to daily give God my trust. I have to daily remind myself that He is GOOD. Because after she went Home to Him, my trust was broken. I asked Him to heal her and He did. He perfectly healed her by bringing her Home, but I wanted her to stay in my home. But He is big enough to handle all my hurt and problems. He wants to take them on because He is a compassionate and caring Father. He is our ever present help and comfort. So I continue to raise my markers of His faithfulness and choose to trust Him.

01/03/2021

March is Trisomy awareness month! As many of you know our daughter Parvana had a rare chromosomal difference, instead of just two 18th chromosomes she had three. What we’ve learned is the smaller the number the greater the impact it has on development. Which is why you don’t hear of many children with T18, T13, etc. Because the more systems that are impacted while baby is growing the greater their fight when they are born.
We have gotten to know so many wonderful kiddos who have differences like P and their incredible parents who advocate for them. Some true friendships have been born out of what could have been a very isolating thing.

We chose not to have any prenatal testing done while I was pregnant with Parvana. (We even waited until she was born to know she was a girl!) I think that not having those tests helped us advocate for her better. Because if you find out you are having a baby with a major genetic difference like this or with one or more problems with their head or brain, many doctors across the country will encourage you to terminate the baby. And if you don’t terminate then they will encourage comfort care. Meaning no interventions at birth. Which is why this month is so important, doctors who encourage comfort care likely don’t know what these babies can do if they are given help at birth! If they are given life saving surgeries and the option to grow. That is why I share, so that people know that my daughter with Trisomy 18 had a big personality and she was worthy of life and intervention.

We know that for many parents a genetic diagnosis like Parvana’s is the most terrifying thing. We also know that God perfectly knit her together. He chose that she would have brown hair and that she would have the cutest gummy smile. He knew that she would have a bonus chromosome, and he knew that she wouldn’t have to suffer on this Earth. We are glad for every ounce of time we had with her and I believe that would be the same whether she was here for 5 minutes or 5 months.

03/01/2021

We took a picture just like this one in front of the tree last Christmas to announce we were expecting our Parvana girl. Of course then we had no idea she would be named Parvana or even that she would be a girl. I was convinced all the way up to moment she was born that she was a boy, but I am so glad I was wrong!

In reflecting on last year and all the things that 2020 brought us, I remember feeling so small and so powerless so often. An over arching theme for me was control - giving God the control that He always has and stop trying to yank it back from Him. He subtly and gently reminds me - sometimes not so subtly - that He hasn’t been surprised by any of this. When the government shutdowns in the US began in March, He knew. When our daughter fought for her life in the NICU, He knew. When we performed Operation Jailbreak and got home In November, He knew.

So that is my big take away from the year. He knows. Every big thing and little thing - He has control and He knows it all.

15/12/2020

One month ago we snuggled our baby for the last time this side of heaven. One month of my arms aching to hold her again. One month without her constant coos and noise. One month of just missing her. One month closer to seeing her again.

25/11/2020

We call this picture her “mad scientist’ look. She wasn’t even a month old and we had just given her a bath so her hair was so soft and fluffy. Big JOY to see her fluffy baby hair standing straight up like it always loved to do.

It was very important to me that I be there for every bath while she was in the NICU and I only ever missed one! That was a sad day because as a NICU parent sometimes you feel like you have to fight hard to be involved in “regular” baby things like diaper changes and baths and when one of those is taken from you it feels like a blow to the heart. I remember fighting back tears when I walked in and the night nurse had finished her bath without me.

Parvana’s entire life was full of some really high highs and some really low lows, sometimes even within seconds of each other. And the past two weeks have been no different, we are experiencing God’s grace in a way we never had before and He is GOOD. He is where true JOY is found. And man, Heaven sounds so sweet.

17/11/2020

Parvana’s celebrations of life are planned! In Texas, you can join us on Friday at 2pm at Watermark Fort Worth. In Alabama, you can join us on Tuesday, the 24th, at 6:30 pm at Crossroad Baptist Church.

In lieu of gifts or flowers we are asking that donations be made to AbelSpeaks. This organization has been very dear to us during Parvana’s whole life. Here is the link to read more about their mission and to donate.

https://www.abelspeaks.org/

15/11/2020

Prayer Partners,

Parvana has made the greatest adventure yet, one we all desire, she is with our Lord.

After fighting so long she was able to come home to all her family and rest.

It is WELL!
She is whole!
She is with Jesus!!!
She is very loved. ❤️
And she is very missed.

Her Mom and Dad will update soon. Arrangements have not been finalized. They have lots of family around supporting them.

Pray for them as they grieve and process.
~ Marmee

13/11/2020

Sitting by Parvana holding her hand and reading scripture.

Had a rough night/early morning. EEG confirmed that she has been having seizures which cause her to stop breathing and then her oxygen and heart rate to plummet. After the EEG we went to have a CT scan around midnight to see if maybe she had had a stroke. CT scan confirmed that she had large stroke probably during her heart cath on Monday. The scan showed the large stroke and a small brain bleed on top of it. And this morning she had another pulmonary hypertensive crisis that resulted in her needing CPR. All that to say, we will likely never have our alert, bright eyed, interactive Parvana back and we are weighing what decisions we need to make for her moving forward.

Please pray for wisdom for us and the doctors. Please pray for healing for Parvana!

12/11/2020

We hopped off the ventilator for about 6 hours today before having to hop back on because she kept having apneic episodes. We think these episodes may be seizure related, so we are having an EEG tonight to help determine what is going on! It has been a rough afternoon for all of us and this can’t help but feel a little like a defeat.

Please pray for healing! Ask That she would have no more apnea and would be able to breathe well without vent support! She was breathing fine on her own aside from the apnea so ask that we could get back to it! Pray for peace for Paul and I, this afternoon was really hard and I feel like I stopped breathing everytime she did. Ask for wisdom for the doctors! Parvana is driving this boat but the doctors have a fair amount of influence as well, so ask that they would continue to have Parvana’s best interests in mind.

11/11/2020

No big changes today! We have done our best to keep Parvana sedated and chill to give her body time to heal. She hates being on the ventilator and fights the tube everytime she wakes up, which means everytime she wakes up she has a crisis. So the goal is the extubate as soon as possible - around mid morning they say!

Please pray for a successful switch back to her high flow cannula! Please pray for incredible lung function and that she would have no trouble weaning down low on support (maximum we can go home on has been 4L! Please pray for 2L.)

10/11/2020

Parvana had a hard time of it today. She went into hypertensive crisis today during her heart cath and we weren’t sure how she would pull through. But she has a team of doctors and specialists who helped her recover and got her stable again!

She went back for her cath around 8 this morning and the first portion of it was successful. They were able to get accurate data and she was doing well, but then her heart decided to stop working the way it is supposed to, so they had to give her more oxygen and a pacer to encourage her heart to beat. After they had been trying for sometime and her sats were staying low in the 40s, the team (ICU doc, palliative care doc, and pulmonologist) called us to tell us that she was not doing well and they were just trying to get her stable enough to move back to her room so we could be with her. Our pulmonologist, whom we love and who cares for Parvana so well, told us that she was going to go back and be with Parvana so that she would not be alone. Shortly after that conversation Parvana started to turn herself around and to stabilize. She is now on the ventilator, at least through the night, and sedated so that she won’t fight herself into another crisis.

We are trying to hold her with open hands and trust God wants her best, but man it is getting harder to hold my hands open. Please pray for continued stability for Parvana tonight and rest for us.

09/11/2020

09/11/2020

Little baby has her heart catheter and gtube procedures scheduled for tomorrow! Her CO2 was back down in the 40s and the doctors feel good about proceeding! The cath is scheduled for 7:45am and the gtube will follow! They say it could take between 2-4 hours to get the information they need so we don’t expect to get our girl back until sometime tomorrow afternoon.

Please be praying for the procedure to go well! Pray that Parvana does well under anesthesia and can get off the vent ASAP. Pray for peace for us! I am a little jittery thinking about it but ultimately Paul and I both are confident in this decision.

“The LORD has established his throne in the heavens, and his kingdom rules over all.” Psalm 103:19

08/11/2020

Last night I spent my first night away from my baby in over 4 months. Paul sent me home to sleep in a real bed and he is staying at the hospital tonight and I have already called the PICU to check in after only being gone an hour!

Parvana had a good day yesterday and today and has been such a brave, strong girl through have her blood drawn multiple times and people always coming in and messing with her. She brings us so much joy!

Pray this weekend that her CO2 would stay in the 40s! They will not do a cardiac cath if her co2 is higher than 55, so pray we stay below that! Pray for good rest for Paul and I. Pray for wisdom and peace for all our upcoming decisions.

04/11/2020

Day one in PICU was a good one! Parvana’s CO2 was back down in the 40s after spending the night on increased support through her cannula! Today she has been alert and happy and we are loving the time with her.
Praise! Parvana’s gas was better! We are both allowed in at the same time! We have a private room we can make cozy for her! We have doctors who care for her and us well!

Pray for - Continued good CO2 - she would stay healthy and not catch any bug while we are in the hospital - good rest and wisdom for us

04/11/2020

CO2 of 63 this morning led to us admiting to the PICU today. Parvana is now on 10L of air through her nasal cannula at varying percents of O2. She will be here for at least another week, because she is having a heart cath on Monday. The cath will give us more insight into how her heart is doing really and how severe her pulmonary hypertension is. After Monday we will have a more clear idea of what sweet P needs to thrive.

To say we we surprised to be back in the hospital would be a lie - we have been inching toward it but just praying we would stay out of here. Parvana has progressively need more support and we were running out of room to help her at home. So we are here and we are happy she can be getting the help she needs!

She was so smiley and alert this afternoon after we were admitted and when we just hanging out. Which is so good for this mama’s heart to see her kiddo happy! We are in for a long road but we are holding tight to the one who is holding all our hearts and all our days.

“No trial has come beyond Your hand
No step I walk beyond Your plan
The path is dark outside my view
Still all my ways are known to You
And oh what peace that I have found
Wherever I may be
For all my ways are known to You
Hallelujah, they are known to You!” — All my ways are known to you - CityAlight