Tag Archives: motherhood

3 weeks home!

Posted

First time home we got to be a family for 3 whole weeks! We got to have her home for Easter too which was nice, mama got to dress her all up!

Being home was a major adjustment though. We came home on about 5 or 6 medications, oxygen and the feeding tube. It was chaos the first week just trying to find our groove and get used to actually having 2 kids at home now.

Big brother was a huge help though, the more we had let him be involved, the better. He may not have fully understood everything but he wanted to help and be apart of things. That is probably the best thing you can do if you have another child/children at home with your heart baby and/or special needs baby. Get them involved, teach them what each thing is for. He soaked it up. He became my “button pusher” for her feeding pump when I needed to pause things or start it back up. He grabbed me a diaper and the wipes when I needed it. I even let him help with meds here and there. It made the transition that much easier. There was still that little bit of jealousy here and there, attention seeking when we were focused on her more. But continuing to explain that she’s a baby and can’t do things on her own yet helped.

Naturally as we finally got into the groove of things, I had her med schedule down, we got used to traveling with all our “gear”, and Easter was upon us which meant a few days later would be back to the hospital and ready for heart surgery #2.

Our Easter ended up being busier than I wanted but I didn’t have it in me to argue. We bounced from house to house with friends and family. By the end of the day we were all exhausted including our son who decided to throw a fit over something silly, I can’t remember what it was now, but I do remember it caused me to then have a breakdown myself. All the months going back and forth to the hospital caught up to me and the fear of another surgery around the corner set in. I was going to have to leave my baby in the hands of surgeons yet again. I stood outside and balled my eyes out for a good 20 minutes or more with my husband holding me tight. It’s truly amazing how much your mind and body can handle before you just cave and breakdown or it becomes too much and you have to have a good cry. Afterwards you brush yourself off, wipe away the tears and get back to “normal” and go face the kids. We enjoyed the rest of our evening and prepped for going back to the hospital the next day for pre-op stuff.

Round 2 was upon us, should be quicker stay right?……

She’s here!

Posted

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.

The beginning…

Posted

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.