Paul and Emily’s Story

Site created on November 20, 2019

Dear friends and family,

We are so blessed to welcome our sweet natured and beautiful girl Gnocchi in our arms at last!  The Lord orchestrated the best possible birth at University Hospital. Just after Gnocchi's arrival, she was whisked away to the NICU due to inhaling meconium and we are so grateful that we were in a hospital setting with all the services she needed.  The morning after delivery the pediatrician informed us that they had noticed some midline abnormalities in Gnocchi.  We want to share with you what the pediatrician shared with us so you can be both informed and join us in prayer for Gnocchi.

Here are the challenges our strong, sweet, resilient Gnocchi is facing:

1.    Gnocchi has craniosynostosis. This is a premature closure of the cranial suture in the forehead. It will require surgery to restructure the skull in order for her brain to develop normally.

2.    The doctor noted a heart murmur and reported to us that she has a common heart defect (VSD) - a hole in the lower chambers of her heart. This often heals up on it’s own but if it does not, it will also require surgery to repair.

3.    Gnocchi also has a stomach hernia which the doctor indicated seems more significant than most and while it could heal it may require surgery to repair.

4.    She has a floppy airway and some congestion which has led to challenges with breathing and feeding.  This may also require treatment if it does not clear up on it’s own.

5.    Gnocchi has club feet which are currently being treated with weekly casts.  The most recent news was positive and we are hoping she will only have casts for a couple more weeks before she moves into braces.


The doctors informed us that these "midline abnormalities” are sometimes grouped by a genetic syndrome.  This means Gnocchi may have a genetic syndrome, it also means she may not have a genetic syndrome.  We have already started genetic testing and are awaiting the results.

This information was a lot to take in less than 12 hours after birthing our precious little one. We have been taking our time this past month putting all the pieces together and staying on top of doctors appointments. 


We are grateful to be part of a Christian medical share program for our insurance. This is an alternative type of insurance program. The program has been very supportive so far and we are thankful for their support and willingness to work with us as the medical bills in the first month have already exceeded $30,000.  It's possible that we will exceed the help that this program can offer but only time will tell. Currently they are praying with us and open to sharing our medical needs with the other members.


One of the challenges of the medical share program is that we are required to pay a portion up front every time we attend an appointment.  So far each appointment has required a $200 out of pocket payment and we have been doing several appointments each week.  We hope to have some of this expense reimbursed by our medical share program but it likely won't be until March.  This has created quite a financial burden on the family.  We are grateful to have had a Go Fund me set up on our behalf to help us address this issue.  This has been a process of learning to trust the Lord day by day and we are very grateful for many blessings in the midst of these challenges.

We are so grateful for the amazing team of doctors both at University Hospital and now at Children's as well as our regular pediatrician. We are thankful that we are only 17 min away from a regional hospital that regularly performs all of these surgeries/treatments. Everyone has been very encouraging and uplifting which has been such a God-send as we are at the hospital for multiple visits each week.
We are thankful that Gnocchi's feet seem to be responding to the casting so well - they mentioned that her joints are very flexible and she may need less casting than most!

We give thanks for the genetics clinic! While it is extremely tough to get an appointment at the Genetics clinic, they reviewed Gnocchi's case and moved up her appointment from mid April to early December!

We are encouraged that in our last visit to the pediatrician, he mentioned that he was not hearing her heart murmur any longer. That is incredibly encouraging and we see the Cardiologist on Dec. 19th to find out the state of the VSD.



We invite you to pray with us...

That God's healing power would be seen by many and His Glory would be shared through Gnocchi's life!

That God would heal her heart defect.

That we would have wisdom in all the medical decisions.

That her breathing issues and feeding congestion would clear.

That we would not be discouraged as the bills come in and we would look to Jesus for direction.

And that we are able to find a good balance with care for Olive amid all the appointments for Gnocchi.

Thank you friends.  We will post here again when we have an update.


If you are interested in helping Paul, Emily, Olive, and Gnocchi, please consider clicking above on the "Ways To Help" link for one of the following:

Prepare and deliver a meal for the family- check out the mealtrain link.

Make a financial donation towards medical expenses- check out the Go Fund Me link.

Newest Update

Journal entry by Emily Ijames

 Happy Birthday Gnocchi!!!
We made it one years old!!😄

Fair warning: this is a very long post. And while I am writing to mark Gnocchi's first birthday - yay🎉 - this post is mainly about me.

Gnocchi is recovering from her surgery well and although we've had some rough sleepless nights recently, overall she's coming back to her normal self and we are incredibly grateful! She is starting to babble more and the sound of her voice is the most beautiful thing I've heard! She loves music and perks up everytime we start dancing😊  She is Olive's biggest fan😏 We are SO happy she's in our lives! So happy this surgery is behind us! And so blessed to be her parents❤ We love you our precious "dumpling" more than words can say!

Even with the excitement of her birthday, for me there is also such an overwhelming sense of sadness these last couple of days as I think about the last year. I am keenly aware of this day one year ago and the shock of having the doctors walk me through, head to toe, all the congenital abnormalities and the concern of a possible rare genetic syndrome just a few short hours after holding her in my arms. 

I can't imagine my life without this amazing little girl and I am so in love with the person she is becoming...and, this last year was nothing like what I expected our first year with "baby" to be. Honestly the this whole coronavirus has personally paled in comparison to my experience of handling Gnocchi's needs and the anxiety of keeping everything together for her care. 

I've been to over 130 drs visits and therapy sessions this past year as well as letters to drs advocating for sleep studies and feeding evals, iron checks, spinal x-rays and the like. We've had two significant surgeries with hospitals stays. I cannot even count all the visits, applications, many...many phones calls for billing and medicaid and WIC, etc. And, I am very thankful for these services - AND - it has been a job (we just finished ironing out the last bill in August).

Aside from the hefty medical schedule, there was also typical newborn care and, not so typical aspects like lying awake listening to her snore at night but always waiting for the pause, then the gasping for breath. Trying to hold it together emotionally while she choked down every. single. bottle. crying and struggling to breathe as she ate - knowing I'd have to do this six more times that day. Feeling guilty that I couldn't keep up exclusive pumping and watching her miserably go through constipation issues as we found a suitable formula. Orthopedics stressing that we keep her in braces 24/7 while she developed an awful sore on her heel and trying everything possible to help her heal so that we did not have to start all over with casts again. And most recently, just praying that when she was under for such a long time in surgery that the Lord would please bring her back to us --
And he did...exhale 2, 3, 4.

There has just not been downtime, and it's been very hard to work through how much these experiences have impacted me. And while she has come through with flying colors - many praises to the Lord!! - I can tell I still feel quite broken under the surface. 

And because we do not live in a bubble, there was also the coronavirus happening, and impending career instability plus a Coding bootcamp for Paul, and more family "togetherness" time than anyone ever hoped for with no end in sight😉
Our marriage was by no means perfect before but as many of you have experienced it hasn't been helped by isolation. And those of you who know Olive or have heard me talk about parenting Olive know that she has two modes: refreshingly delightful/creative and very, very challenging. So we just oscillate between those two extremes all day😉

Wow...as I am writing I am in awe that I am still standing. 
I am also aware that I do not want to continue to live in the shadow of this year... It has been weighty. But that does not need to define me or our family. We can be creative. I can develop new ways of being that bring me joy and thus help me to offer the best of me to my family. It will take time to process through some of the traumas of this last year but by the grace of God healing and new life is possible...with God all things are possible (Matthew 19:26).

Lastly, I do want to say thank you to all of you. Because, admittedly this year has been a "doozy" (aka Groundhog Day😉) but I don't know how we would have made it through without you! You all have made meals, dropped by with care packages, donated as the bills poured in, took Olive out/dropped by with crafts and gifts for Olive, prayed, called/texted to say you cared...without you I would be in such worse shape! The Lord has been so very good to us...you, His people have come around us, and Gnocchi is developing and progressing beautifully. 

We are so grateful!
And Happy Birthday my sweet Gnocchi
❤Emily

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