Tag Archives: family

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?

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.

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.

First surgery successful!

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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.