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The Latest Baby Update



Many of you saw a recent update I gave on my Instagram stories regarding some changes that have taken place in my pregnancy this past week.  So many of you sent messages and comments filled with so much love, support, prayers, and positive thoughts; it truly blew me away.  I tend to be the type of person who doesn't like to ask for help or support, but this experience we are going through is unlike anything I have ever encountered.  I knew I was not going to be able to get through it alone, and I wanted to reach out and share with you all what was happening with us.  The crafting community is such an amazing thing to be a part of, and I am even more grateful than ever to call this community my home.  So before I delve into a detailed update of where things are at right now, I wanted to thank each and every one of you from the bottom of my heart for your support, love, positive thoughts, healing vibes, and prayers.  Thank you for being a part of this community with me, and for sharing this journey with us!

First, just as some background information, up until literally one week ago, we had thought we were experiencing a totally normal, healthy pregnancy.  Every medical test I had had (both routine tests and the more specialized ones that they give those of us who are considered "older", lol) came back within normal ranges.  There was literally nothing that gave us cause for any concern.  As far as we knew, everything was great.

On the day of our 20 week anatomical ultrasound, everything changed so quickly and without warning.  With this being my sixth pregnancy, we have had many ultrasounds prior to this, and they have always been a joyous event for us.  We already knew the sex of this baby (it's a boy!), but we were very excited to see the images of our sweet little guy.

I knew something was wrong when the tech was spending a lot of extra time on his heart, and although she had started out the session with a lot of upbeat chatter and laughter, she got really quiet.  If this had been my first ever ultrasound, maybe I wouldn't have noticed; but I think having had so many of them before, I knew to be concerned.  After the ultrasound, we saw our doctor, and she gave us the news that there had been heart defects spotted in our son.  We don't live in a big city, and we were informed that in order to receive an official diagnosis and prognosis, we would have to travel to a bigger clinic in other parts of Oregon in order to see a specialist.

I left the clinic crying and feeling very scared.  We knew so little, but just hearing that there were heart abnormalities present was a frightening thought indeed.

The next step was to visit a specialist in another city.  We went two days later and had two specialists there run some tests, confer with each other, and give us the official diagnosis.  That was Monday, and that was the absolute low point for us.  The doctor cried giving us the diagnosis, and the news was very grim.  At that point, we didn't know if the baby would even make it through this pregnancy let alone any surgical intervention he would receive after birth.  We headed home fearing the worst.  There was a lot of sadness, fear, and grieving going on, but also a very stubborn hope that the next specialist would be able to see something the others didn't.  I just knew no matter what the next step was or what the next piece of news ended up being, I was going to treasure every moment that I got to carry our little boy.

On Wednesday we headed up to a BIG hospital here in Oregon.  We left excruciatingly early in the morning and had a full day of tests, appointments, and meetings with a team of specialists to find out more about what was going on with our boy and what could be done for him.  It was a very anxious and busy day; a literal whirlwind of ultrasounds, echocardiograms, and doctors explaining very complex things to us.  I was so impressed with the team they had assembled there.  Everyone was so knowledgeable, compassionate, and so committed to helping our son.  I started feeling hopeful for the first time since Friday that maybe there was a chance everything would be okay.

At this point, our son has what is called transposition of the great arteries (where the pulmonary artery and aorta are reversed).  That in and of itself is one of the more common heart defects, and while it does require a surgical fix, the survival rates are very good.  Our son's condition is much more complex, however.  To keep it as simple as possible, he also has a hole in his heart, and one of his valves is too small to circulate the oxygenated blood throughout his body.  This last defect is the most critical and most concerning to the doctors, because it is the hardest to fix.  It is also very difficult to predict how things may change in the next few months of growth (during the rest of the pregnancy).  However, I asked the pediatric cardiologist point blank if there was hope for my son, and she said, "Yes, absolutely."  Even though the rest of the day had its ups and downs and not all of the news was great, I couldn't help but to feel (and continue to feel) so much happiness about this.

No matter what, he will require surgery very soon after birth.  There are still so many unknowns and "what if's" that remain, however.  How many surgeries he will need, the exact type and nature of the surgery (or surgeries), and how that affects the overall prognosis are all very big unknowns at this moment.  We won't know until later in the pregnancy some of the answers to these questions.

Moving forward, the baby is being very closely monitored and assessed on a regular basis.  I will be making regular visits to specialists for this reason, along with my regular prenatal appointments.  We will be meeting with the cardio-thoracic surgeons towards the end of the pregnancy to discuss the surgical plan and what happens next. The most likely scenario is that our son will have surgery within days of birth, and will have to remain in the NICU for 4-6 weeks for recovery.  (This could all change if he requires multiple surgeries, of course). 

That is where we are at now, and a very brief summary of what we know.  As I said earlier, there are so many unknowns and possible changes that could occur.  We are doing our best to really take this one day at a time, one breath at a time; and plan for the most likely scenarios in any way that we can.

In the meantime, we would so appreciate the continued prayers, positive thoughts, and healing vibes to be sent to our son.  We have decided to name him Alaric, and so appreciate all of the love being sent his way.

I will definitely keep you all posted as we go along.  Again, I cannot express my gratitude enough for the outpouring of love and support we have received. 

That is about it for now.  I am so thankful to this community, and thankful for crafting in general; it has truly helped to keep me sane this past week, and I know it will be a lifesaver throughout this whole process.  Thank you; I love you all!!!

Comments

  1. This is such devastating news, but I believe in the power of prayer and that God will guide the doctors and surgeons to make your son Alaric whole. Sending love and support and I hope you manage to get some rest during all of this.
    Elly Willis (LeafYarns)

    ReplyDelete
  2. Dear Jilly, I continue to pray for you, your husband and Alaric. Praying for wisdom and knowledge of all the various health care workers who will touch your lives these next few weeks, the caregivers for your children, and especially for your children during the times they need to be separated from you. "The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness." (Lamentations 3:22-23) Kay Harrison Taber (ClassicKate50)

    ReplyDelete
    Replies
    1. Thank you for praying with us from the get-go, Kay. We appreciate you so much!

      Delete
  3. Thank you so much, Elly! We so appreciate your love, support, and prayers.

    ReplyDelete
  4. Nothing matters but all of the prayers and well wishes I can possibly send to you and Alaric and the rest of your family, Jill. Nothing. I will be lighting a candle and praying for all of you, especially that sweet wee boy. Take care of yourself!

    ReplyDelete

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