Monthly Archives: February 2025

Preparations before open heart surgery

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I was home a matter of 2 days before her open heart surgery was scheduled. We of course were at the hospital visiting 2 days beforehand. We were able to bring our son twice before as well to meet his sister, which was the most adorable thing in the world. He didn’t know any different with all the wires she was hooked up to, he didn’t question it either, I guess in his young mind this is how new babies had to be at the hospital.

The Sunday night before her surgery, we visited and I was finally able to hold her. I haven’t had such tears of joy in a long time. Of course the day my son was born I did and then when I heard her cry when she came into the world, but something about finally having your baby in your arms and looking down at that sweet face can overwhelm and excite you all at once. A funny story with this visit, the nurses had made an adorable sign for outside her door with her name on it, but they had put “Izzy” on there and I about lost it hahahaha. I swore when we named her, her nickname would NOT be “Izzy,” I wanted to call her “Bella.” One because my friend had a dog named Izzy and two because Bella was much prettier to me. The nurse felt so bad, she kept apologizing. But I couldn’t be mad, it was sweet and turned into a joke from there on out. She of course made her a new one right away and we had that nurse several more times after that. The little things they do to make it a little brighter there is amazing, especially being in the PICU with so much stress, beeping, etc.

That Monday night before her surgery my husband and I stayed down at the hospital to be with her and to make sure we were there the next morning for when they were going to take her back for surgery. More doctors and nurses than we’ve ever seen before in/out of course, explaining the procedure, the anesthesia, etc. Again, super over whelming, so much so, I honestly don’t remember half of what they told us. I know I signed off on everything and just kept thinking they better take care of my baby.

That morning bright and early they came to get her, we were able to walk back to a certain point to the OR and give her kisses and such before they continued on. Yet again I was having to leave my baby, this time with surgeons that were going in to open her up and work on her heart, something the size of a walnut! Completely unimaginable. Naturally, everyone told us to go walk around, leave for a while, go get food and such because it was going to be a long day of waiting. Luckily they called us every 2 hours or so with updates, which helped, but still not easy. There wasn’t much to do being winter so we were somewhat stuck at the hospital.

She’s here!

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The months of appointments flew by and before we knew it the day finally arrived, our c-section date and our baby girls birthday 11/19/2018. C-section all goes as planned, she came out screaming which we both held our breath for, and I was able to see her briefly after my husband was able to cut the cord and before they had to whisk her off to the NICU for her low oxygen levels. Hardest thing ever as a mom, not getting to hold your baby when they first come into this world. But I knew there would be that possibility and was just happy she was here and doing well all things considered.

Luckily, after they got me situated and back to my room, they were able to wheel my bed to her room in the NICU so I could see her for a bit and then later I was able to go down in a wheelchair once I was able to get up and move some. Naturally they put the NICU at the complete opposite side of the same floor you’re on, I guess that’s one way to get mommy’s up and moving, make them hike to go see their babies.

A new experience for us since our son was completely healthy and got to be in the room with us after birth. The NICU, whole different world. She had her own room of course, and all the cords and things she was hooked up to, was overwhelming and of course under the warmer to keep her body temp at a good level. Luckily we could get close to her and touch her, I just couldn’t hold her yet. In fact, I wasn’t able to hold her for the first week, yet another hard task for any mama. Fears that start to go through your head about bonding, and skin to skin contact that they aren’t getting. We just kept touching her and talking to her so she knew we were there. A few days later the group of doctors began to appear and introduce themselves and explain what we were looking at. It was definitely looking like surgery at a week old. Her oxygen levels were low, which they expected, but they wanted to get her in for her first surgery sooner rather than later. Before I knew it, my time at the hospital was up and I was going to have to go home without my baby and prepare for her having open heart surgery at 8 days old.

Nothing prepares you for the thoughts and feelings of having to leave your baby at the hospital. I’ve known other mother’s who have gone through similar situations of their baby being in the NICU for a period of time, but they lived close to the hospital the baby was at, and there wasn’t talk of a major surgery at such a young start. The hospital of course was amazing and said we could call as often as we wanted to check in, and that they would be moving her to the PICU a few days before her surgery so they could get used to her and prep for surgery. This meant we could actually stay in her room over night if we wanted. Of course we all know how well you sleep in the hospital in general, let alone in a room for your child with nurses in/out non stop. Of course, my fears of balancing between both our kids started to creep in and I wasn’t sure how we were going to handle everything that was coming our way.

Surgeries, surgeries, surgeries…..

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As I neared my due date with this little girl, we had to start looking at potential for surgery. Not only for her, but myself as well. They had me scheduled to be induced the week before my due date, which was fine with me. Of course we all have that so called “birth plan” that completely goes out the window the minute you’re in the delivery room, so this time round I was game for whatever was going to be best for her. But there was also the potential for a c-section depending how she handled the stress of labor.

Naturally, leave it to my little girl to go breech and stay that way. She was quite content with her head in my rib cage and was having no part in turning herself around. So they OBGYN tells me they can try to turn her, excuse me!?!? You can do that?! Yes, apparently they can and let me tell you, after doing it, I would rather go through natural labor with no drugs, than to EVER have to go through that again and they even give you an epidural. Nothing I would ever recommend to another mama unless it was absolutely necessary. The epidural did nothing for me, she was too high up, so it literally did not numb the area I would have needed numbed. Once we scheduled this, it meant a whole day basically in the hospital myself with my husband, the epidural, being put almost upside down in the bed and extreme pressure as they pushed on the outside of my belly to try and get her shifted. Again, she is my daughter and was having no part in this and would not budge. After about 3 tries, they let it go and we scheduled to do a c-section instead the week before my due date. Seriously, never, ever would want to go through that again. I swear as soon as I was back upright and laying down I knew she had moved right back to where she had been, and could almost see her flipping off the doctors hahahaha.

As for our baby girl, we also talked to the heart surgeon a few weeks before my due date to get an idea of what our next few months/years may look like. Most of our trips to the doctors usually ended in a “we have to wait and see how she does once she’s here.” So of course the same was said from the surgeon. We had a few potential scenarios though which gave us a little better idea of things. She could potentially need surgery within her first few days/weeks or we could be able to wait up to 6 months before she would need something. Again, it all depended on how she was once she was here. Either way we were looking at a several step process to get her heart in good working order, which meant at least more than one open heart surgery. Not quite what we were anticipating, but again, whatever she was going to need, we were trying to prepare for. The best case scenario looked like 3 potential heart surgeries in her life with plenty of doctor’s appointments to help keep an eye on things.

Keep in mind, during all of this I was still working full time, going to all of these appointments and trying to balance time with our son. Thank goodness for both of our parents who helped with watching him when needed along with his regular daycare provider we had at the time. With the plan for surgery in the air, we also needed to think about what we were going to do long term since she would be in the hospital a good bit. Do we drive back and forth, do we try to get a room at Ronald McDonald house or the Children’s House, both were near Hopkins. It was just more added to the endless list of things we had to think about.

And here we go!

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2018 July/August was when this adventure began. Nothing like being 5 months pregnant and having to transfer your care mid-pregnancy to a huge hospital. You already have a number of appointments as is for a normal pregnancy, now on top of that I had a ton more added to monitor the heart defect for our lil one that was going to arrive before we knew it.

But nonetheless, we did what was the best for this baby. I waddled each month through the huge hospital trying to find my way to the different doctors that I needed to see each time. Soon enough I had it down with no problem, but still you know how it is when you’re pregnant and having to pee all the time and your appointment is down this hallway, up those elevators, down this hallway etc. Luckily for me they tried to schedule multiple appointments in one day as best we could. Or in the morning so I could at least go to work, leave for an hour or two and come back to finish out the day.

The nice thing was I got to see my sweet baby multiple times. Between echocardiograms to see her heart and then sonograms to check on her size. Naturally she never liked getting pictures taken though so many sonograms they couldn’t get everything they needed or see her face hahahaha. The first few though I didn’t know what we were having since we hadn’t had our gender reveal party yet, so I had to keep reminding the sono techs not to slip up hahaha.

August, September, October were filled with these appointments. Each showing that not much was changing with her heart unfortunately. She was growing strong though, but that left part of her heart just wasn’t keeping up. In between all of this we managed to do our gender reveal party, a little fun amongst the crazy. My mom was the only one who knew what we were having until she had to enlist my dad’s help right before the party hahaha. We decided to do water guns with pink or blue paint so our son could join in the fun. I had made white t-shirts for all 3 of us to wear and when it was time we had a mini water gun fun and revealed the PINK paint on our shirts! Our friends and family couldn’t believe it, we’re a family of BOYS! hahaha Our son wasn’t sure what to make of it at first then was excited when he realized he would have a baby sister.

The beginning…

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This has been several years in the making, our journey with our little girl wasn’t long enough but we learned so much from our time with her, and I think it only fitting to share it with others with the hope to help anyone else who may be going through something similar.

Early 2018 we found out we were finally pregnant with our second child…..felt like it had taken forever to finally get pregnant again, but here we were. In July it was time for our 20 week sonogram, you know the one where you get to see how big the baby is finally after months of not getting to see anything and of course find out the gender if you choose to. We were surprised with our first, but this time around, mama needed to plan! So we were going to find out but only via a gender reveal party. We told the sonogram tech that if she saw anything to not say a word, simply put it on a piece of paper and into an envelope for us. I would later give this to my mother for safe keeping and for her to be the only one who would know before the party. No pressure hahaha!

While we’re there watching all the images on the screen, with no clue what we’re actually seeing until she explains, the tech says she can’t get a good angle or something of one of the measurements they needed since baby was moving too much. She went to grab the doc to see if he could assist, so we figured nothing of it. He comes back in, takes a look and then we start to get nervous as he’s taking quite awhile as well and not saying much. Once the doc finishes he then explains he saw something abnormal with her heart. It could be nothing or it could be something……..and thus begins the WTF thoughts in our heads.

He couldn’t get a good enough look to see if there was just a small blockage or a defect. He immediately wanted to get us to see a pediatric cardiologist that could get a better look. So he called, got us in for the next day and off went the emails of us calling out of work the next day. Naturally we’re scared and nervous wreaks since we never imagined anything was wrong with the baby.

The next day we ventured to this cardiologist, my pregnant self yet again had to have a somewhat full bladder for this so I’m dying to pee the whole way there (an hour drive from where we live) and wracking our brains as to what it could be. Another sonogram later and the doc saying that he could “stare at it all day and it still would not look normal.” The baby definitely had a heart defect of some kind, her left side looked more narrow than the right from what they could see. So off went the suggestions, possibilities and where to go for care from here.

After spending the rest of the day together having lunch and walking around town, my husband and I discussed everything, including the options of hospitals we were given. Over Children’s in DC or Loudon in VA, we decided to transfer my care to Hopkins in Baltimore. That would be where our baby would be born as well in case of possible surgery, plus it was closer for me for work. From there is where our journey began for this wild ride we went on.