Tag Archives: health

Round 2 continued….

Posted

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…

Posted

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.

Going home?!

Posted

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……

Posted

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?

First surgery successful!

Posted

After the longest day of our lives, her first surgery was a success. I believe it was a good 5-6 hours that she was in there and all went very well. She had what they call a Norwood with a Sano, which made her bottom chambers of her heart a single ventricle since her left side was still very narrow and could not pump on it’s own. They of course had told us they would be leaving her chest open for a few days just in case they needed to get back in for anything quickly and of course she had a breathing tube and was completely sedated.

Nothing ever prepares you for seeing your baby right after open heart surgery. So helpless and pale looking. Nor are you prepared for all the other wires and things that she was hooked up to on top of what she had to begin with. Once they had her settled back in her room we were allowed back finally and were able to ask a million questions about everything she was hooked up to. Those nurses are amazing with how they have to go through all of the cords and things to make sure everything is hooked up correctly to monitors. They each had their own way of “organizing” things too. We were both so overwhelmed by it all. They had 2-3 nurses in her room all night long monitoring everything, and I mean everything. At that young of an age, they have to calculate and recalculate everything depending on her numbers and how she looks. The pain meds, the paralytic, the oxygen, blood pressure meds, etc. She had drain tubes that came out of her chest under her dressing from the surgery to see how much blood drainage was coming out. Poor baby had a catheter to see how much she was peeing too. You truly get traumatized with seeing all of it. Such an innocent little thing having to go through all of this and she can’t tell you anything.

I stayed for a 2nd night to be with her while my husband went home to take care of our dogs and cats. Our son luckily was with our parents so he was happy and having fun. They keep the lights on all night as well in her room, so not much sleep for the 2nd night for me, but she did well over the night and they were happy with how everything looked. Her heart surgeon was very impressed at how strong she was and how well she handled the procedure. Finally, a bit of good news in the storm of uncertainties. If all went well, we’d be able to move up to the main floor in a couple weeks and have a couple weeks to recover before going home……at least that’s what we had hoped.