We just hit the one year anniversary of a very scary night for our family. The night we took our 10 day old baby boy to the ER and he was quickly airlifted to Children's Hospital, sedated and intubated for 4 days.

Yesterday marked the one year. And when I think about it it scares me to no end how close we came to losing our baby boy.

I wanted to share some info here to hopefully educate and make at least one person aware of what to look for and what a VSD can mean. I wish I had known a few of the signs. I am thankful that my husband and I did put the "signs" we did notice together and took DS to the er immediately bc come to find out VSD/CHD is the #1 cause of birth defect deaths. Simply bc they can go unnoticed

Mrs. Smoothie wrote a few blogs about her experience with CHD http://www.hellobee.com/2016/02/17/when-your-instinct-tells-you-something-is-wrong-congenital-heart-defect-chd/
Her's resulted in surgery to repair the hole. So far we have not had to have surgery.

I'd like to share our experience and maybe give some insight for new mom's or soon to be mom's just to have. I don't in any way want to scare or freak anyone out. But I feel like knowledge is power and the more you know the better.

I found out I was pregnant with DS when I was 39, I was AMA and I had gestational diabetes. I was monitored by a specialist and they never caught my sons VSD. I was induced at 38+4 and had my son at 38+5 days. He came out crying, he was so tiny, only 6 lbs 8 oz but he scored 9's on his apgar's and was ultimately deemed a healthy newborn. He latched right away and he was alert and a typical newborn. Our pedi came to the hospital as routine and checked him and he was all good to go home. There was ONE nurse that did one check of him and mentioned a slight heart murmur but our pedi said he didn't hear it...... that nurse was the ONLY ONE to catch anything and it went unexplored and we weren't given any specifics to watch for ( in the event that he did have a murmur which ultimately pretty much means he had a vsd/hole). And of course in the moment we didn't think to really push the issue bc it was taken so lightly. However, in hindsight I wish we'd been more aggressive about it. I wish we had been given specific things to look for.

We took our baby home and adjusted to becoming a family of 4. DS was thriving. He was eating, pooping and sleeping just as a newborn should. He gained weight and checked out ok at his f/up apt 3-4 days later.

One thing we did notice, and honestly I'm not sure we even mentioned it to our pedi but he was so noisy when eating.. He would grunt and groan, we joked that he sounded like a little rooting piggy. We would giggle and think it was cute. BUT LITTLE DID WE KNOW this is a red flag for a VSD/CHD. I **wish** someone had told us this at the hospital when they thought he might have a murmur. But we just didn't know.

DS thrived for 9 days but on day 10 he was just not himself. I know that sounds odd but in 9 days you do get to know your baby. He wasn't eating, he was sleepy and he was fussy. I had a friend visit and I remember wishing she'd leave bc I kept thinking he had to eat bc it had been a while and I'd try to latch him and he'd just fuss. I tried time and time again and he just wouldn't' eat. This was our first sign that something was wrong. Alone it could just have been a tummy ache or an off day.....

Later that afternoon I realized he wasn't warm enough. I know that sounds weird but when I picked him up from the rnp it wasn't nice and warm. He wasn't blue or anything and he felt warmish but just not warm enough. That's the only way I can explain it. This was sign number 2 for us.

I snuggled him and was doing skin to skin until I went to put DD to bed. I gave DS to DH and off I went. While I was putting DD to bed DH changed DS's diaper and DS didn't fuss. Completely unlike him. He is a fusser, still is to this day (thank god). DH immediately realized this was way off, SIGN number 3.

I immediately took him to the ER. Thinking as I went this is a waste and I probably won't get home until after midnight, ugh.

After he was checked in they checked his oxygen level and it was low. They checked his temperature and he was classified as hypothermic Que, mommy guilt and panic. While we were there he began having a hard time breathing (which would have happened at home if we hadn't taken him in when we did). He was ultimately flown to Children's Hospital and treated there. That is where we learned he had a severe VSD. And that he was very very sick.

I realize now that he wasn't eating that day bc he was just fighting to stay alive. His heart was failing him slowly.... by the time we got him to Children's it was enlarged and not pumping properly and he was headed for heart failure.

IF WE HAD JUST GONE TO BED THAT NIGHT WE WOULD HAVE LOST OUR BABY. He would not have survived the night. It's 100% possible that he could have died and it very well might have been classified as SIDS bc there was "nothing wrong with him" and there was no documentation of anything.. no vsd or chd...

He had been a normal baby, growing and passing all dr's visits. But something was very wrong.

I want to get this out there and post signs to look for. As stated above I don't want to freak anyone out or cause stress but I wish I had known a few of these things. All I can say is we are LUCKY that we put the few signs we had together.

Signs of CHD/VSD in newborns--remember 1 of these symptoms alone is not need for alarm :

1. Lethargic- this is hard to determine bc most newborns sleep a lot, however if you notice a difference be conscious of it

2. Poor eating-this was one of our signs

3. failure to thrive-not an issue for us

4. fast breathing or hard to breath-not a sign for us but it did develop once we were at ER, so I suspect it would have developed at home

5. Grunting or groaning while eating-one of our signs

6. low oxygen/lips turn blue-not one of our signs but I do suspect this would have quickly come

7. low temperature-this is not listed when you search symptoms but it was one of ours

I am so so thankful that we put our son's symptoms together (not eating, cold and not himself at diaper change) and took him in. The dr's actually said that unfortunately a lot of times these signs are missed or over looked which result in this being the #1 cause of birth defect deaths simply bc the babies are brought in too late. For example if we'd stayed home DS would have started struggling to breath and most likely would have been turning blue by the time we got him to ER and then he would have had to have been airlifted and there might have not been enough time to save him.... frightening.

I am so thankful to have our DS and it scares me deeply to think what could have happened.

ETA: some murmurs may not be heard until 6-8 weeks