Author Archives: Jen Lupinacci

Open heart surgery #3

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A good 3 or 4 weeks after Bella’s 2nd heart surgery to redirect the oxygenated blood into her lungs from the heart, what was supposed to be a Glenn but they did a Hemi-Fontan instead, we head back into the OR for her 3rd open heart surgery. This time to repair a leak they found in the cath lab from the 2nd surgery. They called this a “baffle leak,” the tissue they put in during the 2nd surgery some how got a tear in it preventing the oxygenated blood getting to the lungs like it was supposed to.

This surgery though should hopefully not be as long as previous ones, but anything is possible. Again we wait for the usual updates during the surgery but as usual she did great and pulled through like a champ for the 3rd time. And before we knew it, she was back in her room and we began the recovery process yet again. All these procedures I was getting used to the routine finally of how things go. Also finally learning what to look at on the meds and oxygen and what questions to ask when the doctors round each morning and evening.

Within the week she is doing great, pain meds are being weaned and oxygen levels looking much better. After 2 weeks we finally went up to the main floor, out of the PICU, to recover and work towards going home. Before we knew it she was doing well and completely off of oxygen and they were getting us ready to go home. Mostly getting supplies ordered as far as formula and meds went. We would keep the oxygen supplies just in case we needed it at any point. Fingers crossed we wouldn’t though!

Finally, towards the end of June, after 2 months in the hospital this time we were on our way home! This time we should be home for a nice long stretch since her next surgery shouldn’t be until she’s 3 or 4 years old. We’ll of course have the usual monthly cardiologist appointments and GI appointments plus her pediatrician appointments too, but as long as we didn’t need surgery for awhile we were happy!

Round 2 continued….

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We made it through the 2nd surgery great, Bella was healing fairly well and weaning off pain meds pretty good, but only had about a week of good oxygen levels and then started having some weird things happen with them. She would look good, but numbers were reading low. For her normal range she was 70-80’s oxygen level wise, normally for people you’re in the upper 90’s to 100 for this. But with her anatomy, her levels are acceptable in the lower range. When we started seeing her dip into the 40s-60s and no real explanation as to why, we started to question what else could be going on.

One day while I was with her, we watched as she was in a happy mood and color didn’t look too off, but her pulse ox was showing she was in the 40s. The nurse and I just looked at each other completely baffled. She increased her oxygen to as high as we could go, and not much change. She called in the docs and they were baffled too. After what seemed like forever, we got her numbers back up to normal range, but she was back up on her need for oxygen. I can’t remember the exact number of liters of oxygen but it was more than what she should have been needing at this point, especially after this 2nd surgery.

Another couple days goes by with these ups and downs, and the doctors finally determine it’s time to do another heart catherization to see if we can figure out what could be going on. So on we go for yet another procedure.

They got her on the schedule pretty quick for this heart cath and we had yet another day of waiting to hear how things were going while she was under. I believe this one was one of the quickest heart cath’s she’d had so far as they found the issue pretty quickly and there wasn’t much that could be done in the cath lab. Turns out her 2nd surgery she had done had gotten a tear in the repair and was leaking blood back into the heart, so her lungs weren’t getting all the oxygenated blood they needed and were supposed to be getting. Naturally this now means another open heart surgery to get this repaired.

Several discussions with the surgeons occurred after the cath and details on what would be done during the surgery to repair this leak. We of course were in agreement that it needed to be done. Luckily with it being so soon after the last surgery things hadn’t fully healed so would be easier to get access with opening her back up. So far, doesn’t feel like there’s any end in sight for her or us.

2nd surgery, here we go…

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The day after Easter Izabella and I headed to Baltimore for pre-op appointments and then to check into a hotel near the hospital. Much easier since we’d have to be back at 6am the next morning.

Pre-OP stuff went well, she handled everything like a champ as usual. Really just an echo, check up then bloodwork. They were happy with her growth while at home. I forgot to mention before but on top of all the medications while home, we had to track her weight every day. I came home with a baby scale on top of everything else.

Once checked into the hotel we just rested and waited until my husband got off work and came to meet us. Our son was of course at one of his grandparents house for the next couple of nights. We went out to dinner just the 3 of us once my husband got to the hotel. And then back to get her a bath and ready for bed. We had to figure out a few things for the oxygen and feeding pump but thank goodness for strollers to hold her tank and feeding pump bag. You realize how creative you can get when you’re not home with all the supplies you normally need!

Naturally neither of us got sleep that night but she slept great thankfully, and at 4am we were back up and getting ourselves pulled together to bring her back to the hospital. This time we had to check in and wait to be brought back to the PACU where they get her vitals and in a gown for surgery. We were able to go with her to the OR and give kisses before they put her under. After that we took deep breaths and headed to get food for ourselves and begin the long day of waiting. We went back to the hotel and rested for awhile until time to check out. Then spent the next 3 hours walking around Baltimore. Trying to kill time and keep our mind off things as well as waiting for updates.

They call every 2 hours or so to update you. Luckily she did well through the majority of the surgery. At one point I think they had to give her a little nitric oxide to assist with oxygen levels and she needed a little blood, but all things that are to be expected. Finally around 4-430pm they said they were done and it would be an hour or so before we could go see her in her room. I don’t think we got back there until almost 6 or so. My poor husband still had to drive home to take care of our dogs too. Thank goodness for family to help during the day with them.

Seeing her this time around after surgery wasn’t as scary as the first time. She looked much better and everything had gone great. She still needed to be heavily sedated so not to move around with the incision until it healed some. But at least this time her chest was closed. Once all settled my husband left and I stayed as I usually do after surgeries or procedures. Time for night 2 of not much sleep since this time I’d be in the PICU with all the beeping and such going on. Luckily even though they had to keep the lights on all night, there was just one nurse instead of a team like her first surgery.

Ok, now we’re through that hurdle! Time to heal, wean off pain meds, work on weaning oxygen, take out drain tubes and start feeds within a week or so right? I figured at least a month stay. They told us no more than a couple weeks. Nope, turns out we would be here almost 3 months this round.

3 weeks home!

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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?……

Going home?!

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February is gone and into March we go. Slowly talking of 2nd heart surgery but the surgeon really wanted to wait for her to gain more weight and get closer to 5 or 6 months old before doing it. We agreed naturally because that would make her that much stronger for the procedure.

Next was talk of rehab in between before the second surgery, which meant transferring to another hospital for that! I’d finally had enough and asked if it was truly necessary. I felt comfortable enough by this point with giving meds, doing her feeds and working with her developmentally. I just wanted my baby home, even if for only a short while before the next surgery. Amazingly they listened! They started looking at her as going home and prepping us for what would be needed. This all included getting us home care support, oxygen, feeding supplies and nurses to come check in on her. I got trained on her feeding pump even though I had watched the nurses do it a million times. Oxygen supplies were delivered to our house and I was shown all that was needed for that. Feeding supplies were also all delivered for us.

Finally by the end of March we were ready to go home! We brought our son with us that day, did not tell anyone we were coming home and even though it was an extremely long day waiting for discharge and getting prescriptions, we were going home after 4 months in the hospital. We surprised the grandparents by skyping once we were home. They were in shock lol, but it was the best feeling!

It truly helps to speak up. You are your child’s voice and advocate. If you speak up, the doctors will listen, even if it takes a while. It’s even better when you have the nurses on your side that help voice your opinions too. Our nurses were amazing both in the PICU and recovery floor. They helped have my back on the idea of going home with her. In the beginning I was so unsure of myself and if we were making the best decisions for her, but the longer we were there, the more I watched and listened to the nurses and doctors, I became more comfortable with speaking up. Our sweet girl in her going home outfit, not what I had originally pictured for bringing her home since it had been 4 months and normally you get to go home after just a few days. But at least she was getting to wear one of her many adorable outfits FINALLY!

Moving forward or not……

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After the first surgery things were looking good. I was pumping as much as possible to get her breastmilk through a feeding tube in her nose. But after a month my milk dried up. I just couldn’t keep up. So they switched her to formula through the feeding tube. We had gotten moved upstairs to the main floor and out of the ICU after a few weeks after surgery.

But then there was talk of a different feeding tube being put in. She had pulled the one in her nose out a couple times, so they suggested a G Tube instead of the NG tube. The G Tube would go into her stomach and less chance of being pulled out. So we agreed and on Dec. 21 she had her 2nd surgery of her life. This one was of course not as complex and much quicker. After only a couple hours she was done and back in her room on the main floor thankfully.

She did well with it right away but soon after started to have bad reflux and other troubles with her stomach. They stopped using the GTube and switched back to the one in her nose but this time it bypassed the stomach and went right into her intestines, an ND tube instead of NG. This seemed to help things and then talk began of another procedure called a Nissen to restrict the esophagus some to help prevent the reflux.

As February started to pass us by, they finally scheduled her Nissen procedure. Now 3 months we’ve been there with no idea if we’d be going home anytime soon. Luckily that procedure went well and we were able to go back to her G tube for feeding. Although, looking back now, I think I may have gone against doing the Nissen if we could do things all over again. I don’t think it truly helped her as much as they thought it could and I think with the right reflux meds she might have outgrown it. But unfortunately I can’t go back and at the time we only had the resources given to us at the time. I learned so much over our 14 months with her and even now afterwards I’ve learned things that would have been great to have known at the time….

Next up, talk of the 2nd heart surgery and when that may be, possible rehab and weaning oxygen. Was it ever going to end?

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.