The next ten days were, for lack of a better term hard. I cried multiple times everyday leading up to this anticipated fetal echo. Pregnancy hormones plus anticipating horrifying news is a terrible mix. Looking back to these days I feel bad for Matt. He was such a rock for the two of us and I’ll always wish I was more for him. 

Finally our appointment has arrived and I remember shaking in the waiting room. Being called back for our turn somehow felt like being swallowed by a hole. The entire echo felt like a blur, but I do remember Matt telling me, “Everything will be okay.” Now this line is important cause unfortunately there will be multiple more times it’s important he tells me this. And girls when you’re old enough to read this know your father knows more than he leads on, so always take his advice….. after you clear it with me.

  After the echo we met with a cardiologist from St. Christopher’s Children’s Hospital. No we didn’t pick her, she happened to be employed by the hospital we were receiving our high risk pregnancy care at. She explained what Baby B heart looked like based on what she could see. Now again the girls were still so small so even she had some things up in the air. She explained the surgeries she would need to fix her heart over her lifetime. She explained how she would immediately need to be emergency transported from this hospital to St. Christopher’s. This plan didn’t sound ideal to us knowing these babies would statistically come early, but you do everything and anything for your kids. If I’m being honest though she painted quite the promising picture of how things would go. And how she would live as normal as any other kid would once she completed these “step” open heart surgeries. She assured me that she would make it to birth as my body was providing her with the oxygen and nutrition she needed. We left still scared, I mean open heart surgery and not just one but three! It’s not news you take lightly but we were looking as positive in this situation as we could. 

We explained it to close family and friends as best we could until our next echo which could yield more information. However when we talked it over with my mother she suggested we get a second opinion from Children’s Hospital of Philadelphia (CHOP). At first we were both reluctant. Maybe it’s because we didn’t know any better but in actuality it was because I’m not sure we were ready to hear anything more than the fluff this cardiologist from St. Christopher’s fed us. I thought it over, talked it over with Matt, and ultimately we decided to get a second opinion.

During our next checkup we asked the MFM specialist to send our records over to CHOP for a second opinion. This woman.. had the lady balls to start telling me that CHOP was going to ask me to terminate Baby B. That Baby B may not even make it to birth and that if she didnt Baby A wouldn’t make it either…. Now I’m not presuming to know the day this woman had but you should NEVER say something like that to a pregnant woman or to anyone really! I began tearing up, Matt stood up to leave and told her to send the records over and we would just see what they had to say. Matt, well lets just say he was pissed. However now I’m terrified something is going to happen to my girls. Literally checking for movement constantly. Yes I could tell the difference in each baby’s movement. Again Matt assured me Everything would be okay.

I called my regular OBGYN and told her what happened, she agreed we should go to have an evaluation from CHOP. She sent over our records that morning and the next day I got the call from CHOP when we could come to have these 20 week echos and measurement checks.

Boy was that appointment day brutal. My mother had come with us to help us navigate the busy day and help us ask all the questions, cause in these situations it’s easy to get distracted and miss the important things. By the end of the 4 hours of straight ultrasounding I was in so much back pain. Guess one of my girls decided it was a good day to kick and squish some nerves in my back. And our scheduled lunch break was revoked after being so behind on the schedule they wrote up for us. Lucky my husband is the most amazing man and snuck me in some chicken tenders.

They agreed to take on our care from here on out. They had a special delivery unit for us to have the girls at so my family didn’t have to be split up. They gave us the tough news, told us how challenging this experience would be especially since her heart was so complex and unusual. The cardiologist from CHOP gave us a quite similar depiction as the cardiologist from St. Christophers. Ultimately the three step heart surgeries were still going to be a necessity. But if you wanna talk numbers CHOP’s success rates with open heart surgeries was far beyond St. Christophers. (Something we also did not know at the time was St. Chrstophers was about to file for bankruptcy) The fetal doctor briefly asked us about termination. Once my husband shut that down they agreed to not bring it up again. We asked if she would make it to birth and they reassured me I was providing everything she needed right now. We asked how we could be having identical twins but only one with such an abnormal heart. Because genetically there was no known link, they presume it was an abnormality that occurred when the girls eggs split in the whom. All in all I felt like we were in the right place, the best place to give not just Baby B but both my girls the best chances at life.

 Are there any other families like ours you may ask. Less than a one percent chance of this happening.. To date I have only heard of one other family, not met any in person. Though I’m sure there are more out there we have yet to meet. 

Every ultrasound feels special, first time pregnancy or last. And since finding out at 7 weeks I was expecting twins, we met that ultrasound machine more times than I can count. Since my girls were mono-di twins meaning they were identical, sharing one placenta but in their own sacs we had to be seen about every two weeks to make sure they were growing on track and in sync with each other. My OB had referred me to see in conjunction with her a maternal fetal medicine specialist.

 I remember sitting in the waiting room at 17ish weeks, it was a later day appointment, so the room was empty. There is something nice about being alone with your spouse in a waiting room. You can joke freely without judgement from others. Talk as loudly as you want. You can watch whatever you want on the tv, no one ever changes the channel, but we could if we wanted! Every scan to date was perfect, every genetic test we put in for came back with zero to less than a percentage chance of there being anything wrong. To say I was confident may be an overstatement while walking back to our ultrasound room, but I was certainly excited. I loved how frequently I got to see my little squishes just beating the crap out of each other or snuggling up. Now for those who don’t know me and my husband personally, we are talkers and loved chatting it up with the technicians while they took the girls measurements. It helped pass the time since sometimes my girls refused to cooperate and it would take some serious patience to get everything we needed. The thing about the technicians though is they are not allowed to say anything medically speaking. Sure they can tell you where the head and legs are but anything further than that needs to be reviewed by a doctor. 

So while we are discussing topics I can’t even remember and the ultrasound tech is playing the wonderful movie that is my babies on a larger screen for us to enjoy, the ultrasound tech gets quiet. Too quiet. I start to pay more attention now.. She’s scanning baby A’s heart, then over to baby B’s heart. Back and forth and back and forth. So I ask, even though I see the difference, “Everything alright?” She professionally responds,” Yea i just need to get better pictures it will only take a few minutes.” At this point I know something is off. I can see something is off, however at this point in time my knowledge was limited but I knew what a heart was supposed to look like and baby B’s didn’t look entirely right. She swiftly finishes up and tells us she is going to have scans reviewed by the doctor in the office right now. Before she even walks out I’m in complete tears, while Matt is trying to assure me it’s probably nothing and is trying to reassure me with the clear genetic results. But I asked him if he noticed the scan and he cannot deny that something was off with the tech. At this we are crying in each other’s arms trying to patiently wait for the news the doctor would have to share and what that would mean for my baby girl. I certainly will not lie. I feared the worst. I feared she wouldn’t make it, I feared I would never get to meet her. 

Finally the doctor came in and I’m sure maybe in some other circumstances he’s a great guy but on this day to put it nicely he was horse crap. He’s trying to show us on the scan that her heart is different. But then second guessing himself as he’s going through video clips. But he doesn’t know how things are functioning or why it looks different. That she may be too small to see all the details and will have to come back in two weeks for an early fetal echocardiogram. So we ask, “Is there any way she’s just too little and there may not be anything wrong at all?” Denial is sad isn’t it. He abruptly shoots out, “No, there is something wrong.” So through tears we ask, “ Will she be okay, will she make it?” He shrugs, “I dont know I’m not a cardiologist. Come back for echo in two weeks, see the cardiologist then.”

Let me just start with we had a lot of hope this would help alleviate a few issues we were seeing and would completely resolve others. It was 3:30am when we left the house to make it to CHOP by 5:30am, her procedure report time. I must say Jocelyn was one happy baby for being up that early. She smiled and laughed and babbled until she fell right back asleep on the ride. She was also being a ham with pretty much anyone that payed her a passing glance as we walked our way to the cardiac outpatient center. She was all smiles that is until she realized where we were. Then she got fussy and clingy and even her favorite tv shows couldn’t bring back the smiles.

The IV took a while to get, it always does, which as a parent is just unbearable to have to handle. Especially when you requested an ultrasound guided IV and the nurse doing it assures you she doesn’t need it…. three sticks later the IV is set up. Worst part about you reading this is you can’t see the enormous eye roll and annoyance radiating through my core that came with me writing out that last sentence. They decided to give her a mild sedative to calm her down and the smiles were back! We got to meet with her anesthesiologist whom we had actually met before, and pierced her ears the last surgery she had. She was kind enough to let us walk her back before the hand off to the sterile procedure area. This baby thought the ceiling was funny while walking back, who knew Versed could make a baby so silly. We gave our kisses and hugged her tight. The pass off is always the worst. This time though Jocelyn did okay she wasn’t happy but.. she didn’t freak out.

We quietly walked back to get our stuff and set up camp in the waiting room. This is where we are to sit and pass the time while we receive hourly updates from the charge nurse on how she was doing back there. These honestly are life line, they come on the hour and if we left for any reason, food, bathroom, ANYTHING, we made sure we were back for our hourly update. After about the third update it was pretty much the same, Dr. Dori was attempting to fix her lymphatic passageways.

This may now get a little medically technical so I will do my best to explain but bear with me. After this procedure we met with Dr. Dori to discuss his findings. He started by saying she had a pretty abnormal lymphatic system. On a scale of one being least abnormal to 4 being the most abnormal, she was a 3. I feel like this news doesn’t come to a shock to us anymore. Everything about this kid is different and complex yet somehow she has always been able to make it work to some degree. However he was unfortunately unable to fix it entirely. Her lymphatic passage way to thoracic cavity (area over her lungs causing the problem) was too narrow for him to access. So he attempted to access some lymph nodes around her lungs to embolise. In an effort to relieve some of the extra lymphatic flow over her lungs, he was able to do a few but not many. Dr. Dori left us with she needs more time for that passageway to grow. I can’t lie at this point in the conversation I’m crushed to know this time he wasn’t able to fix it. So our tentative plan for now is to keep her heavy on the diuretics. Which is not ideal, it’s a very fine line of appropriate diuresing and total dehydration. Dr. Dori will map out for her surgeon what else needs to be done come time for her Fontan (her next step open heart surgery). She will not need this surgery until 2.5 to 3.5 years old. Cardiologists look at many factors to decide when each child receiving these step surgeries will need it. So with that being said it leaves us in a potentially long process of balancing her fluids and keeping her as safe as possible until then.

There is a backup plan though, there always is. If in the event we cannot keep this in check with medications there is another surgical option. One that we would very much prefer not to have to under go as the long term repercussions are unknown.

As for how Jocelyn is doing, well she is a freaking rockstar. She was only the CICU for 24 hours before we could go to the step down unit. Where she hung out for a few more observation days while we rearranged her diuretics making sure she electrolytes were all in good balance. I know we will be more closely monitored and more frequent office visits complete with X-rays and lab work. So here’s to more stress… We are currently home and she’s seems to being doing just wonderfully. Fingers crossed and all the wood knocked on. Thank you for reading and I hope everyone continues to make the best of the summer.

Welcome to our family blog! We are the Welge’s and this is our family story. My husband and I met the way anyone does these days, online. After almost 3 years together we got married in May of 2018. Soon after we found out we were pregnant with identical twin girls and life was bliss. However 18 weeks into our pregnancy we found out our one daughters had a complex heart condition that would require several open heart surgeries over her lifetime. We were met with many uncertainties about how our future as a family would look and honestly it was terrifying. He is an active duty service member and I worked in the pharmaceutical field but twin pregnancy is no joke and I unfortunately had to leave my job to be a stay at home soon-to-be mom. I was placed on bed rest then ended up hospitalized for three weeks doing my best to make it to full term. But life always has other plans. Our girls Lucy Marie and Jocelyn Rose were welcomed to this earth in April of 2019 approximately 3 months early. So needless to say we had a very long road in and out of the hospital, and still do. I’m still a stay at home mom and I love every minute of it. My purpose for creating this blog was to share our story. To update our families remotely, but also to be capable of finding people, families whom can honestly relate. Those that can seek solitude in knowing they are not alone. It will take time to write each girls story and how we ended up where we are now as a family so please be patient. We thank you for your support always.