Noah’s Story

Site created on October 22, 2018

[As originally written in July 2018]  On March 20th Brandon and I found out we were going to have twins!  Our emotions were all over the board with excitement and being shocked.  It was in January 2018 when Alex, our now 5 year old, started talking about 2 babies in my tummy - something we definitely just blew off as we didn't even know i was actually pregnant when his conversations had started about the twins.  Anyway, it was on May 29th at my 20 week ultrasound that it was discovered that Baby B (Noah) not only has club foot to both of his feet, but also has a very rare heart defect.  The u/s tech wanted us to have an ECHO done asap, so they were able to get us in to have it done the next day, which we were able to then meet with Dr. Martin, the heart specialist in St. Cloud.  The most recent diagnosis is that Baby B (Noah) has an extremely rare heart defect that involves 5 different defects, called Tetralogy of Fallot with putative Absent Pulmonary Valve Syndrome.  In medical terms the doctor most recently wrote, 

"CONCLUSION: Tetralogy of Fallot with putative absent pulmonary valve syndrome. There is at least moderate pulmonic valve insufficiency with marked left pulmonary artery enlargement appreciated. The aorta overrides the ventricular septal defect and there is good biventricular function. There is right ventricular enlargement seen. No AV valve insufficiency is appreciated. The peak gradient across the RVOT/main pulmonary artery is now at 25-30 mmHg."

Due to this rare defect, i will be delivering in the cities with surgery scheduled shortly after Baby B (Noah) is born. Baby B (Noah) will then be in the hospital of a minimum of a month during recovery - most likely longer. Also, due to Baby B (Noah) having multiple deformities, there is a chance he may have down syndrome, but we will not know for sure until he is born. The heart doctor wants us to have consulatations at both Abbott and at the U of M in the cities, which will happen in the next 2 weeks, as he wants us to decide where we feel most comfortable and confident in the surgeon(s) that will be working on our little guy after birth. We ask for as many prayers for Baby B (Noah) as possible. For him to stay strong not only in my womb but also after birth and throughout surgery and recovery. For Baby A (Lincoln) to remain his healthy self. And for us, as a family, to continue to stay strong through these life challenges.  Thanks for listening to our story! 

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Alicia Noakes

This week was quite the emotional week.  I originally had gotten word this past week that Noah's monument wouldn't be placed until this coming Spring after the snow is melted.  I've been waiting month after month for this to get complete and placed, and hearing this news made me a complete emotional mess.  It wasn't something I had expected since we were told the monument would be done this past October, when we had originally purchased and designed the monument in July.  

Then, out of no where (Well, I did send an email stating my frustrations, but never thought anything could be done about it), I had gotten called a couple days ago that it was going to be placed that day.  I couldn't believe the day was finally here!

We are so happy with how it turned out.  It is absolutely beautiful and perfect.  I have attached photos of the monument.  As you look at the photos, there's a Noah's Ark on it, along with a photo of our precious Noah, and a copy of his footprints.  On the flower vase on both sides is a picture of Mary kissing a baby.  On the back of the monument Jesus is walking, holding the hand of a young child with a teddy bear.

On a different note, I wanted to share one story.  About a couple months ago, Brandon, I, and the boys went to a pumpkin patch.  Alex insisted on picking a pumpkin for Noah, and he also wanted to bring the pumpkin to him that day as well.  It started to rain lightly as we were visiting Noah.  On our way home there was the biggest, brightest, and boldest rainbow I had ever saw in my life.  It truly felt like Noah had something to do with the rainbow.  Without me even saying anything Alex had shouted out, "thank you baby Noah for this beautiful rainbow!"  This has probably been the only sign of him so far.

Lastly, I want to touch base on one other thing.  I feel like my biggest struggle (besides not being able to have Noah in my arms), is having the feeling of not being able to relate with anyone on what we have gone thru.  Yes, i relate grately with the heart mamas ive grown to know, but not with someone that had Noahs specific heart condition, and what ultimately took his life.  I've joined support groups online.  I've searched out books.  There are hardly any books out there on people's journeys with CHD.  The closest I get to relating to people are the couple people I've grown to know at the hospital while there, and a couple blogs I follow of fellow CHD mamas.  But I haven't came across a single story or blog of what ultimately took Noah's life.  I know no one that has gone through protein loss enteropathy, and that had the CHD of tetralogy of fallot with absent pulmonary valve syndrome.  In general, i know no baby or child that has gone thru protein loss enteropathy in general.  But more specifically, I know no one that has gone thru both, whether they survived both, or not.  All I want is to come across a story similar of Noah's journey.  Someone I can fully and entirely get.  I am extremely grateful for the people and blogs that have come into my life that I have been able to relate more to.  There feels have been very similar to mine.  And I am very grateful for that.
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