baby by oakley: Baker | Heart Warrior

Navigation

Monday, May 15, 2017

Baker | Heart Warrior


Our sweet boy, Baker Dee. 

This little man is constantly on my mind and moving like a wild one in my belly. We've had a stressful week with our little guy, one that still doesn't feel real, if that makes any sense at all.

Backing up a bit, during our 20 week ultrasound, the sonogram tech had a tough time taking a few measurements, specifically of his heart. He was moving a bunch and as a whole, was measuring a bit behind for gestational age. She recommended we come back at 24 weeks for a repeat scan just to confirm everything was A-OK. 

We had the 2nd ultrasound on May 8th and after calling in for a second opinion, the tech and my regular OB were concerned about Baker's heart and the fact that his femur bones were still measuring "significantly" behind (his head and abdomen were considered to be in a "normal" range). The length of his femur and the fact that his heart was presenting with a possible defect concerned her enough to refer me to a high-risk maternal-fetal medicine doctor for an in-depth ultrasound to find out what was going on with our little man. Not only was his heart an issue but she talked to us about the possibility of him having a chromosomal abnormality as well.

We met with the high-risk doc, who also had a pediatric cardiologist come in to look at Baker's heart and confirmed that our sweet boy will be born with a congenital heart defect that will require open heart surgery to repair, most likely happening by the time he's 6 months old. While his type of condition - complete atrioventricular canal defect - can present in seemingly "normal" children, it is also commonly seen in kids with Down Syndrome so my blood was drawn to test for that and several other chromosomal abnormalities to see if Baker will face any additional diagnoses. We should get those results in a few weeks. We meet with the cardiologist again in two weeks as well to start forming a plan for our little guy.


The good news: this type of defect is FIXABLE. Yes, it will require open heart surgery but once repaired, Baker has a very, very good chance of living a normal life free of limitations. He'll be monitored by a cardiologist his entire life but multiple surgeries aren't typically needed. We are SO THANKFUL that this was caught in-utero so we can be fully prepared when he's born. The defect should not hinder his growth while in my tummy and the rest of his organs appear to be developing normally. After he's here, one of the main concerns will be making sure he's gaining enough weight to make up for the extra work his heart and lungs will be doing until surgery day. 

We are, of course, hoping and praying he does not have Down Syndrome or any other type of disorder that would further complicate his heart issue. If he does, we will love him all the same and be even more prepared to care for him once he's born. It's proving very difficult to wait for those results so I'll welcome the call when it comes so we can have answers and start looking at the bigger picture. 

Physically, I'm feeling totally fine; this pregnancy has been smooth-sailing in a physical sense. Emotionally, I'm all over the board. Coupled with work-related stress (that has since been resolved for the most part! PRAISE!) I was D.O.N.E as of last Monday when my doctor referred me to another office to confirm our fears. I had met my limit. Luckily, Justin kept a cool head and was able to talk me through the different scenarios. We had all week to "prepare for the worst and hope for the best" while waiting to head to the appointment with the high-risk doctor. Baker's situation could be better, but it could also be SO MUCH WORSE so we're still counting our blessings and will be ready to handle whatever is thrown our way. 

We are surrounded by family, friends and neighbors, all of whom have already shown us so much grace during this time. We feel very loved and we know Baker has everyone in his corner. 

7 comments:

  1. Oh mama, that's a lot to hear. But it sounds like your doctors are on top of things which is so wonderful! They seem to have a great plan in place and the best news is that it is fixable. Of course open heart surgery is scary, but that's great that they caught it now and know they can fix it within 6 months of him being born and then he will go on to live a healthy life. Keep thinking positive thoughts. A mama's love is powerful!

    ReplyDelete
  2. So many thoughts and prayers during this emotionally difficult time! You seem to have a really great attitude, which is half the battle, but remember, it's also okay to cry. Like I said on IG, if you need a virtual shoulder to cry on, you know I'm here. I know that fear of having a baby with DS all too well - it's a heartbreaking and scary roller coaster of emotions and I don't wish it upon any pregnant mama, but like you said, you wouldn't love him any less. It's still no walk in the park though and such life-altering news. (I take it no additional markers of DS were discovered?) Lifting prayers for your sweet Baker boy, you, your family, and his doctors. Stay strong, mama!

    ReplyDelete
  3. Love all of you soooooo much. Will be sending lots of good thoughts your way!!!

    ReplyDelete
  4. MacKenzie- have been thinking of you lots because I know the drama with work and trying to figure out child care, expense, etc was already a LOT. But this is so much more to handle emotionally. So thankful that they were able to identify it and get some smart people to look at it and you have a plan. Now waiting for results like that is painful and I'm sure some hours of the days are going to DRAG. I'm praying that in those moments you can keep your head up and stay strong and when you can't anymore that your amazing husband can for you. You're one strong mama and that Baker is one loved boy already 😘😘😍😍

    ReplyDelete
  5. Ive been thinking and praying for you and Baker since I read your post on FB last night. So thankful you are getting a plan in place (being prepared for all the things makes it seem more manageable, right?) and it was caught early. Bless you all.

    ReplyDelete
  6. Oh I just feel so much for you, Mama. I can only imagine all of the thoughts and emotions you are dealing with and I am lifting you, Baker, and your entire family up in prayer- and will continue to do so over these next months!

    ReplyDelete
  7. I've read this post multiple times and I tear up every.single.time. Baby Baker is loved and so many are holding him up in thoughts and prayers. I can not wait to meet him. Love for all of you from the bottom of my heart.

    ReplyDelete