Tag Archives: life

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!