Sometimes I struggle to see “normal” moms struggle. Its hard not to look and think, “That is the hardest part of your day? Could you even survive the hardest parts of my day?” I often undermine the challenge of having a child with exceptional medical needs or precautions. Most days are so very tiring worrying about Jocelyn, checking stats, checking blood sugars, hoping today is the day she figures out how to eat by mouth (cause thats a thing believe it or not), making sure her tube feedings are right, extra steps to prevent vomiting, hoping this week she continues to gain weight. On top of that I have to find the balance of allowing her twin Lucy to grow independently with Jocelyn having the freedom to grow independently as well (that is also a concern with twins).
Here’s why I down play how tough the day to day can be. Because as a mom, any mom, you always do the best for your kids no matter what. So when people say, “I don’t know how you do it?” Sure maybe you can’t imagine but if you were in my shoes I know you would find a way, it may be different then mine but you make things work for your kids. Truth is I’m jealous other moms get normal struggles about listening or cooperation, or even how smart their child is, or what schools are the best. To worry about laundry and what time dance or soccer practice will be the next day. While I sit here and plan our months around doctors appointments, surgeries to come, and god forbid the back up plans to the back up plans if Jocelyn’s condition takes an unexpected turn. For each event planned I know where all the local peds. Hospitals are and how long the drive would be. I have our cardiologist’s cell number for any emergency needs, cause well I’m paranoid and she gets it.
But I’m working on it, I’m working on understanding everyone’s parenting experience is meant to be very different. Their struggles may seem silly to me or even something to be envious of, are still very important and monumental to them. Its not about what the struggle is, it’s how important the struggle is to you. Im learning life yields a different path for everyone.
Please to any parent reading this know whatever your child’s needs are I’m going to support your struggle. My internal feelings don’t trump my ability to look beyond and see amazing mothers doing amazing things for their kids everyday.
We have some fun events coming up and new adventures I can’t wait to share. Until then have fun, be kind and love your little ones.
This week I must have added two tiny mocking birds to my household because nothing said is safe anymore. Even normal words in the mouth of a toddler sound so inappropriate. Lucy’s new favorite word is silly, it comes out sounding more like the word sh*t. Which can really catch a parent off guard when their toddler is not yet speaking sentences to find context clues. I find myself having to investigate the intentions behind the word when she is repeatedly saying it. Which is not easy to do with a toddler. But almost always it’s an innocent reference to the horse Maximus in Disney’s Tangled.
Now like any parent we have had some slip ups here and there with, well.. you know some not nice words. And if I’m being honest.. it is so funny to hear it repeated back. Somedays Matt and I can hardly keep our composure, holding back tears and muffled laughter to deter from encouraging it.
However, I can hear it already, “You should NEVER curse around your child.” Yeah thanks Karen I know. But I’m not walking around my house yelling profanities for no reason, okay. So chill. I’m not perfect, no parent is, and well mistakes will be made. We have figured out something along the path of toddlerhood that has proven helpful to keep our daughters from repeating bad words.
So Matt had come across an article about how after you curse you should say, “banana” that way a toddler won’t repeat it. And if you’re rolling your eyes like I did to Matt, because surely one word could not prevent our children from repeating the bad ones magically. But hear me out. The first few times I said banana after a bad word there was not a word repeated back or she would ask me for a banana. However, it had absolutely nothing to do with the word banana and everything to do with language development. Toddlers tend to repeat just the last word said in a sentence or phrase. So here is what we have begun to do if and when we slip a bad word. Just say any random appropriate phrase after the curse word and what my toddler will repeat is the last thing I said. Which has worked amazingly so far. *insert bad word here* purple unicorn *or here* pretty dinosaurs. Now that I’m thinking about it maybe we should try saying some random SAT words…hmmm..
Now the disclaimers:
Only works if your child is mocking one to three word phrases.
Subject to not work on every toddler.
Will also not work forever so please be mindful you will have to start watching your language more carefully eventually(or don’t not my child and I don’t judge).
This is just something that has worked for us so far and I thought I would share. So I hope this helps! Hope everyone is having a wonderful and healthy New Year!
Well lets just say you gave us all a run for our money, literally. For the world you brought much destruction: a global pandemic – several lives lost, an economic crisis, an outrage over democracy, plenty of karens, the great tiger king, new ways to wear masks, and lets not forget a twisted tea right to the face.
Here are some things in 2020 that curve balled my family while the outside world was also heeding a fly ball with the sun right in their eyes:
Jocelyn in heart failure
Needing another open heart surgery
Getting home way later than expected
Not being able to see any of my husbands family/friends on the west coast
Not being able to have a big first birthday party for my girls
An ambulatory ride to CHOP with my Jocelyn’s o2 saturations in the 60s
Going back to the hospital for Jocelyn
Having to calculate every trip out to leave the house for safety of my girls
Hardly seeing any family or friends
Almost having my family sent to Japan #militarylife (no worries we aren’t going they denied us due to Jocelyn’s complexity)
And last but not least jocelyn struggling to eat by mouth resulting in her struggling to gain weight
It has been tough for so many. Most of us are ready to step through the threshold into 2021 and never look back. While I certainly am ready to do the same, I just can’t full heartily reflect on this year without seeing how grateful I truly am. Crazy right?! I know, but here me out for a minute… or a few. I’m sorry I’m a lengthy writer.
Positive things 2020 has brought my family:
Jocelyn coming out of heart failure and eligible to receive her next heart surgery
Her successful heart surgery
The girls first birthday
Lucy learning to walk
Finding Jocelyn’s lymphatic issue before it caused significant damage
Lucy learning to talk
Vacation with my family
My husband being able to work from home and still make money
Jocelyn’s learning to talk
My toddlers just being toddlers
Getting our financial situation under control and paying off a lot of debt
Our home nurse being able to still work with us
Jocelyn learning to walk
No one getting sick in my house
Jocelyn also being cleared for needing any heart interventions until approximately Oct. 2021 (knock on wood)
A Christmas home all together where I wasn’t worried for Jocelyn’s well being
It’s been a wild year of rollercoaster like ups and downs. In spite of all the chaos you, 2020, has created. Babies were still born into this world. Friends still found a way to marry the loves of their lives. This year brought many people together in ways we could have never imagined. Please allow others to take the time to look fondly of the highlights of this year and know they were not alone during the lows. Also know there are only a few hours left of this year before we leap into 2021!
2020 its been real… crazy! But as Fall Out Boy once said, “..thanks for the memories.” Man, I hope that didn’t just show my age… Hope this letter finds you well.
Sincerely,
Jordyn Welge
P.S.- I can’t wait to see what this upcoming year has in store for me and my family. Hope everyone has a happy, healthy and safe New Year and to hold out hope that 2021 can only be better than this one was!
This is one of our most difficult moments. Please bear with me as time is a non existent concept for this event. However the fear and emotions of this night will live with us forever.
We had been in the NICU for a few weeks at this point. The girls had independent rooms but they were right next to each other. In fact they shared a wall with a window so I could be in either girls room and see the other so long as the shade was up. So for these first few weeks things were never easy, it feels like a slow progression forward and it can be frustrating being put on the fast track to learn and understand things around you. I was always present daily for rounds for each girl, to discuss their care plans. After that I spent most of my days going back and forth between each room to read, to talk, to help with each girls’ care and to hold them. However because both girls were so small and required so much help to get out I would hold a different girl everyday for hours at a time.
Matt was given the opportunity to get a light work schedule so he could be up as much as possible to see the girls. I remember it was a friday and he was coming up for the weekend. I spent that afternoon holding and snuggling and singing to Jocelyn. It was always a challenge to hold her and honestly very nerve wracking with all the tubes and wires she was dependent on to keep her alive. But I always tried to make the best out of every time I got to hold each girl. Matt wasn’t going to be able to get up to me early enough to hold Jocelyn consecutively to my holding time with her. Dinner was going to be served at Ronald Mcdonald at 6, so we decided to meet there first. Ronald Mcdonald provided me a close place to stay, shuttles to and from the hospital, and dinners provided every night to help families financially. After dinner then we would go back to visit the girls read them a story and say our good nights. I held Jocelyn until it was dinner time then had help to get her back into the incubator to head off. Once we finished eating we headed on back to CHOP. We walked into Jocelyn’s room first to meet her nurse who was already in there with her incubator lid up and start our night time routine. I put my bag down and walked over to the incubator. Matt was already over their asking what was wrong. That’s when I saw her, I’ll describe her color as grey however most medical staff term the color blue. Within seconds the code blue bell was called. “CODE BLUE, ROOM 80” I panicked as any mother would and immediately left the room and went to Lucy’s room in tears.This can’t be happening, why is this happening she was doing so well, she has to pull through. Jocelyn was in distress and flatlining.. I could see Jocelyn’s stats on Lucy’s monitor. My very first assumption was that it was her heart and I knew as well as anyone else in this room she was far too small to be able to save her if that was the case. I remember a flood of people running over to her room, and could see them through the window. We watched nervously as the tidal waves of doctors and nurses began utilizing any and everything possible from the crash cart. I remember the countless times she would stabilize for a minute then flat line again. Matt came into Lucy’s room minutes after and we both were in tears, hysterical tears. Praying, hoping this wasn’t it for her. Any medical staff member that came in to update us didnt know why or what was happening. Several nurses who didn’t know us or the girls would try to come in and take Jocelyn’s stats off of Lucy’s monitor. By the last one Matt and me snapped and told them not to touch it and that it was our daughter, we needed to see her stats to know when she would come out of this terrible ordeal. I remember believing Lucy had a connection and could tell her we loved her and to stay strong and could get through this, even if we had yet to find the cause. The social worker on call came in and asked us if we needed anything. I didn’t have my phone to call anyone to tell them we needed support. I asked the social worker if I could use her phone to call my mother and tell her to get here. She called the rest of my family but we still didn’t know what or why this was happening.
Finally they decided to xray for any diagnostic information they could gather. Seconds after we had the news. Jocelyn had Necrotizing Enterocolitis or NEC. NEC is when the bowel is dying and causing a septic infection. We had known very little about it up to this point but had known that it was something the doctors were always looking out for. Also up to this point she had NO symptoms of NEC. I mean I just snuggled her in my arms hours before all this happened and she was in no way in any distress. The general surgeon rushed in and explained to us what needed to happen in an attempt to save her life. But he made us no promises. He told us he wouldn’t know the extent of the damage of her bowels until he opened her up. He also didn’t know the extent of damage possibly done to her brain of the rest of her organs from being in cardiac arrest. He didn’t know of any outcome but he would do his best to do an emergency bedside surgery to remove the infected tissue. She would need to be on antibiotics to clear the rest of the infection. He would need to leave her abdomen open, intestines in a silo bag to give the rest of the salvageable bowel space to heal. This surgeon also would need to go back in after a few days and remove any more tissue that wasn’t healing. He felt confident in saying this was caused by her heart. That a lack of adequate blood and nutrients to her bowel caused it to begin to die which results in infection. The infection was so bad it put her in cardiac arrest. We consented to surgery, we wanted to give her every chance at life. At this point she had been in and out of cardiac arrest and flat lining for 45 minutes and the outcomes given to us were grave. All we could do was wait in Lucy’s room with my parents and Matt’s family on the phone.
The surgery for lack of better terms was successful. He removed a lot of large intestine. The rest would be up to what her body could heal. This would be an hour by hour day by day situation. Followed by many end of life conversations. But we always held hope that she would pull through and live a wonderful life.
The conclusion to this was as most of you know was miraculous. She ended up having very little small intestine removed and most of her large intestine resected. After the first surgery he left her bowel in pieces and every few hours a nurse had to look into the bag and give a visual report of the status of color and look of infection in the bag. The first 24 hours were tough; it just felt like every time I looked in the changes from black/gray to pink/red were minimal. But after two days she managed to turn for the better and the surgeon came back for the next surgery to re examine. To his pleasant surprise he only removed one more small portion then reconnected her small intestines together and secured them to the surface of her abdomen in the form of an ostomy. He assured us she still had enough bowel left that the ostomy would be temporary and in a few months when she got a bit bigger he would re attach all her intestines and we would go from there.
Next we met with one of the most wonderful women. She was a gastroenterologist that specializes in Intestinal Rehab Patients (IRP) or kids that had surgical NEC. We didn’t know at the time this doctor actually heads the IRP program, but it was clear how smart she was and her talk with us gave me hope even if she didn’t know it. She explained at this age when kids lose bowel they adapt and will actually regrow some intestinal tissue. She was happy to hear how much small intestine she had left. Made her confident she will grow but it will be a challenge at times and that the likelihood NEC would happen again even with her cardiac defect was extremely minimal. This is where the talks became tough from cardiology. They needed her to show she could grow and heal before they would ever consider her surgical heart interventions. Due to the amount of bowel she had left she felt it was very unlikely she would do so. She explained she hoped she would be successful but in her experience has no inkling that it actually will. And rarely she was ever wrong. After about two biweekly meetings with Jocelyn’s care team, cardiology and gastro. Matt just straight up told the cardiologist she was about to be wrong. Looking back makes me giggle because we had no way to know for sure, but at the same time watching her everyday gain a little weight or hit goals they set we knew she was going to be okay. I remember when she first opened her eyes after this whole ordeal, I saw her. I saw my beautiful baby girl was still there and ready to take on this fight. I can’t ever seem to explain how I knew but I knew. Doesn’t mean I wasn’t always freaked out or don’t panic though over the smallest of things. As for her brain, as mentioned before, she’s been fine hitting milestones later than Lucy of course but Jocelyn’s road has been very different, detoured with many surgeries and hospital stays. But for us and every specialist, so long as she is progressing she will eventually catch up.
For those that are curious about that cardiologist, she is truly an amazing and smart woman. She always kept it real with us even if she was certain Jocelyn wasn’t going to come out the otherside the way she has. No she isn’t our regular cardiologist now, but we still email her updates on the girls and she always visits anytime Jocelyn has been inpatient. Now she jokes with us about Matt telling her she was wrong. I will forever be grateful for her.
Where are we today? Well she’s doing GOOD. Growing and gaining weight can be a challenge but she always seems to have a good height to weight ratio according to her gastroenterologist. She has very little large intestine. Most of the large intestines job is to reabsorb water into the body and form poop. Because she has so little we have had to battle some really brutal diaper rashes, even to the point of skin breakdown. She basically used to have constant diarrhea. However now since she eats some solids and purees she no longer has such an issue with diarrhea. Her bowel is adapting and compensating which is fantastic. She has made an amazing recovery and we will be forever thankful for the whole NICU team that saved her life.
Happy First Heartiversary! On this day last year you had your first heart intervention. While in many ways that day was a blur, there are some things I’m not sure I’ll ever forget.
I remember signing the consent form, for all the things that this intervention was to fix and for all the things that could go wrong.
I remember you were the third case of the day. So me and your dad got to spend the morning cuddling you and telling you how much we loved you. How strong you are. How you will come out of this better.
I remember who was there to provide us support physically and emotionally. We were showered with many wonderful family and friends who wore the shirt I designed in your support.
I remember walking you back to the O.R. You were already under some sedation. I remember me and dad kissing your forward before they wheeled you back.
I remember crying with dad. Hoping this first of many interventions was enough to get you in a better healthier spot. We held on to hope this would be what you needed to kick that breathing tube. And in your own Jocelyn fashion after a week they pulled that tube and you were successful at breathing on your own.
I remember seeing you after almost 7 hours of surgery still asleep with PICC lines and IV’s maxed out with medications to keep you stable, out of pain and heal.
I remember feeling a breath of relief when we talked to your surgeon, how pleased he was with you and how well he felt your recovery would be.
I remember sleeping on a tiny bed in the hospital with your dad and your sister safely sleeping next to the bed in a bassinet. That room was truly maxed out while me and dad took turns climbing over each other that night to check on you in the CICU.
I remember the nurse that worked his tail off that night making sure he didn’t miss a beat with anything you would need. He really took amazing care of you.
It’s definitely been a tough year and a half of your life. A constant battle from one thing to the next. Thankfully we have finally gotten to a time of calm. A time of stretched out doctor visits and less and less frequent visits to the hospital. It’s amazing to look back and see our journey as a family. How far we have come and how in our bleakest of times you showed every doctor you were more than their expectations. After your first code in the NICU they told me and Matt how unsure of your chances at life were. How there weren’t very many children at all like her, therefore they advised us to expect the worst. I even had a nurse tell me, “It’s easy to be a baby.” and for those that were as confused as I was at those words. She was basically telling me growing up and developing like most children was something she most likely was never going to be capable of. Harsh right. Well she was wrong. We gave you every opportunity to prove people wrong and kiddo you always rose to the challenge.
At this point we vowed as parents to give you every opportunity to prove people wrong. To show this world you will always be more than your scars. We will always be here to support you, and let you accomplish your goals anyway you see fit, true Jocelyn style. Keep showing this world your strength Jojo bean.
Next step is obvious, we called parents to share the news. I tried to make it sound enthusiastic but I am sure it did not come out that way. I was terrified. I cried calling my mother. She was already at work but she assured me she would head right over with my step father Chris and told me she would call my father and let him know what was happening. She agreed I should calm down and be proud and excited about the girls arrival but all I was feeling was defeat. Now please bear in mind I had already accepted the c-section. Since the day we found out it was twins I knew I would most likely not get the option to deliver vaginally. So the defeat came from the betrayal I felt from my body. Why couldnt I be pregnant longer? Why was my body unable to give the girls the one thing they needed; time?
Down through the IV goes another round of Mag. but this time I feel unaffected by it. Then surgical prep which if I’m being honest screw catheters cause those suck. I was wheeled away around 9:30am. Matt followed me the whole way to the O.R. then was told to wait and he would be brought back when it was time.
Logically I know for germs and bacterial risks why he had to wait but it would have been nice to have him hold my hand during this process. The nurse helped me up to the surgical bed/table. Anesthesiologist came in, very nice woman explained that process. I was so nervous though my feet started to feel cold and numb. I asked if that was normal, they just said it’s fine and to try to relax. This anesthesiologist deserves 5 stars on her Yelp cause I didn’t feel a thing for this spinal block. Which I was pretty happy about. However I do remember being so nervous I was frozen still when she did her thing. Terrified if I moved at all I would be paralyzed forever or something. Which is a valid fear. When she finished they had me sit for a minute then asked me to lay down. My dumb self was like but this doctor is’nt finished making me numb.. Then the anesthesiologist peaked out from behind some IV poles across the room and was like I have been done for a few minutes now.. Ohhh. Alright. So I lay down and the sheet goes up. Which I know nobody wants to watch their insides get mangled around outside their body but this sheet was stopping me from seeing my girls come out and I would give anything at this point in time to see them and know they were okay.
Matt comes in FINALLY and I’m strapped down at the wrists and can’t feel anything chest down. He was smiling so proud already. He sat down on a chair next to me so our eyes were level. They began to carve me open like thanksgiving turkey and the only way I know is because they did the check in question, “How you doing Jordyn, you okay?” The universal question to anyone who has probably already finished the first slice and dice. The anesthesiologist talked to us and asked Matt if he was gonna take pictures when they came out. Both of us were confused since EVERY dad EVER had told Matt to NEVER look over the sheet. I guess she took our flabbergasted faces as a yes and told him, “When I say so stand up and take some pictures. He nodded and we just awaited her signal.
Finally she says “Ready?” Matts phone in hand camera up and set. “Go!” she exclaims. He takes a few shots and I just listen. Praying so hard I can hear something. Then it happens the most beautiful cry. It surely didn’t sound happy but I didn’t care, she was okay and took her first breath. So I cried as well, happy tears. Then we waited again only five minutes but I remember hearing, “Whoaaaa she’s a slippery one. Alright I got her.” Matts given the go to stand back up and out is my second baby girl. But it’s quiet… I’m waiting and waiting for what feels like a while. But only 30 seconds in real time before I hear a small tiny whine. I released the breath I didn’t know I was holding. She didn’t cry but she was able to make some noise and that’s all I needed to know she was okay. I cried again with those happy tears.
April 10th 2019
Lucy Marie was born at 10:50am
Jocelyn Rose was born at 10:55am
Both weighing in a 2lbs and 10oz
They began to put me back together and due to the nature of urgency I never got to see my girls come over the sheet. Matt was able to peak in and see them in the beginning stages of NICU while I had to wait until I was back in my room.
Once I got there I was on restrictions of laying down for a few hours. They wheeled in each girl one by one before they made their way over to the NICU floor. It was confusing and hard to see them so small and hooked up already to so many things. Not being able to hold them. My family had made it up and to my room and was able to share in seeing them for the first time. We were greeted with so many congratulations and hugs.
When I was finally able to see the girls we talked briefly to nurses and doctors about what our current situations were looking like. None of which seemed emergent at the moment all of Jocelyn’s heart stuff was being monitored and over all for being so early they were both doing fairly well. They did end up having to give Jocelyn a breathing tube. At the time we didn’t know why but now we know her PGE’s for her heart had side effects including respiratory depression. We were not able to hold them right away.
Now let’s talk about recovery and for those that have had c-sections before please don’t hate me cause I was hardly in any pain. Walking was probably the worst on day two but mostly because I hated the feeling of my skin stretching around the stitches. I was so worried I would rip one out or something. Thankfully I didn’t as nurses and doctors checked on the healing of the incision a few times a day. Most nurses asked me who did my c-section. When I told them their response was always the same, “Yeah that makes sense it looks really good and this doctor does the best stitch work.” At the time I could have cared less but honestly this woman also deserves 5 stars cause my scar/stomach looks so freaking good. I took one pain pill on the first night to help me sleep. Back was still hurting from previously being pregnant. But other than that it really wasn’t bad nothing more than I would assume giving birth vaginally would have felt like. But hey what do i know right?
In honor of NICU Support and Awareness month I will be posting the hardest story I have about our time in the NICU. Those doctors, nurses, social workers, respiratory therapists, anyone really who works in the NICU, thank you all everyday for your amazing work. You are all stellar people inside and out and I applaud you all everyday for the work you do. If it wasn’t for all of you my girls wouldn’t be here. So thank you!
Anxiety is a Motherf***er. Yes I said it and we all have been thinking it. I have been dealing with anxiety since I was 12. Or maybe I had it my whole life and it just decided not to make my life difficult until I was 12.. It can be exhausting and overwhelming.
When I was young it manifested itself in tears and hyperventilation. I missed quite a bit of my 6th grade year afraid to even go to school. Therapists to try to find coping mechanisms, find root causes, or triggers to my anxiety that I could learn to avoid. I decided to switch schools. I went from catholic to public and just like that anxiety felt like it was gone. Like I kicked it to the curb and it would never return. But that’s not how having anxiety works. After another year it started to come back but in smaller more manageable waves. I made excuses for why I couldn’t do things with friends or why I didn’t want to go on family trips with friends. I did end up making a few good friends along the way that also dealt with anxiety. You know who you are, so thank you for helping feel like what I was struggling with was in fact okay and could be managed.
Recently I have been pretty anxious. Nail biting is in full force. Having a hard time falling asleep. Patience is thin but I try my best not to get overwhelmed. Constantly checking to make sure my kids are breathing while they are asleep. Having a hard time staying still…which honestly this last one has been beneficial cause I finally found the motivation to deep clean my house and get organized. So guess there is one upside. However, having kids has turned my anxiety into a constant static background noise that every once in a while or if it gets triggered by something can get really bad. What does it sound like when anxiety is really bad you may ask.. The code blue bell. If you don’t know what that is, consider yourself lucky. I hope you never have to hear thatThose crashes can be hard to manage or explain but crying and hyperventilation can cripple me in a corner. I know what some triggers are but I think as you age those triggers evolve or new ones develop. I’m willing to share some triggers: money, the news reports, fear for my girls’ futures, chaos, mild changes in Jocelyn’s condition, staying in new places, my children getting COVID, going out shopping places alone, and driving. Those are just a few, some may be relatable I’m sure but most are specific to me.
How have I been coping? Honestly not well. Been cleaning a lot. Been trying to find things to distract myself like online window shopping but that only goes so far. Sometimes it’s just best to wait for it to pass and hope it does soon. I know that’s not a great method but I’m human and a mother so my priorities always lie with my children first. I agree I need to find something, an outlet to help me cope. And I believe I will start exploring those options. I hear yoga is helpful, but when I find what works for me I’ll be happy to share.
No, I don’t take anything for it. I have always grown up in a family where you don’t take something unless you absolutely need it. Maybe it’s where my high tolerance of pain comes from but I just don’t feel like it’s at the point where I cannot manage or function. For those that do receive medication or see a therapist good for you! I aim to empower, so you do for your mental health what you feel is necessary.
I just want other mothers to understand you are not alone. Whether your child does or doesn’t have medical condition(s) anxiety is still something anyone can have. I never really talk much or disclose that much about my mental health. However since starting this blog I think it’s important to share that I do struggle. That it’s okay to struggle. To ask for help when you feel you need a few minutes to breathe. It’s hard being a mom. It’s a truly demanding job. If you stay at home or work full time anxiety truly doesn’t discriminate. Momma’s keep your head up your doing amazing. Yes anxiety is a motherf***er but it doesn’t define you. And I certainly will not let it define me.
At 25 weeks and some change I went in for a routine visit at CHOP. The more images of Jocelyn and both girls they could obtain the more accurately they would be able to help her once she’s born. A few weeks prior I Began receiving cervix checks because Ii had begun to dilate too early. For those in the medical or OB GYN field, no I was told I could not receive a cerclage (stitching of the cervix closed) when carrying twins since it can increase the chance of preterm labor, something it is meant to prevent. A huge fear of mine was being put on hospital bed rest, mostly because my mother had to go through it her last two pregnancies and it was a tough time for her certainly, but also for us. I feared the girls needing long NICU stays or any long term effects caused by prematurity. But if you know me personally you know life doesn’t ever seem to go the way you planned. CHOP does their routine ultrasound and we meet with the cardiologist again to review Jocelyn’s case. However before we could even make it to the room they ultrasound my cervix and I’m two centimeters dilated. TWO… So it turned into a direct admit. I was lucky enough to get my own room and they strap me in, literally. I have two fetal heart monitors on me plus something they use to monitor contractions. I’m going through the whole hospital admit process and waiting on phleb to come get lab work. They hook me up with a sweet IV. Most painful one I have ever had in my life I might add and start pushing fluids in case I’m dehydrated.
“Any medications you take daily?”
“Just my prenatals and progesterone.”
“Do you have your insurance card?”
“Yeah, Matt can you-”
Nurse Tanya interrupts, sweet woman by the way, “Do you feel that?”
“Feel what?”
She doesn’t answer, so I finish asking Matt for the insurance card to give to an admission lady. He fishes in my wallet for the ID card eyes locked on nurse Tanya then gives the admission lady the insurance card for her to type in our information. Silence for a moment.
Tanya asks again, “Do you feel that?”
“No? Feel what?”
She takes a deep breath… you’re having pretty strong contractions every five minutes or so.
“Ohhh, uhhh no I can’t feel that..”
She then tells me to hold tight so she can grab the doctor for us to meet. That if I need anything, even to use the bathroom, to use the call bell.
Doctor comes in, introduces herself and continues to give me her plan.
We try fluids to see if contractions slow down if not we move to try medications.
Because I’m considered in active labor, bed rest here, continual monitoring and no food.
THE HELL?! No food?! I’m pregnant that’s all I do..
She tells me I may have clear liquids only. Popsicles and chicken broth are not a meal.. And if I’m not contracting tomorrow I may eat again.
Lucky contractions were able to be slowed down with fluids. But I had belts strapped to me all night long and a constant trail of nurses trying to get these wiggle worms of babies back on the monitor.
After about 24 hours I was finally able to eat again. Monitoring was able to be backed off to a couple hours a day. To play things safe I started blood thinning doses twice a day, right to the abdomen…that burned everytime and left unbelievable bruises to match my arms. I was also lucky enough to get steroid shots to help develop the girls lungs right to the butt cheeks. I was still confined to the room. The bed. With basic cable. And limited resources to the outside world.
Matt was back and forth between work and bringing things for me. I cried everyday. Somedays scared. Others homesick. Most wishing Matt was able to stay with me the whole time. I had nurses come in to comfort me or just sit and talk about anything to distract me.
I found out later before Matt would have to leave he would come to the nurses station and tell someone so they could come check on me to make sure I was okay.
About a week in, 26 weeks, they talked about me going home which most people would jump on but I was scared, terrified really, because what would happen if I went back into labor and didn’t know? Would we make it back to CHOP in time. Things were risky enough and I wasn’t ready to risk anymore. After talking to the doctors a few times we agreed to let me stay a couple more days while they watched..
Well I started contracting again, shocker, and we tried more fluid and it worked but the damn IV was bad so here goes another stick plus more blood work. Thankfully it slowed down but not completely I would randomly contract and have no idea..
Luckily I was able to convince them to let me see the sun and I was allowed to have a short hour off the floor to eat lunch or dinner with Matt. But I had to stay in the wheelchair. Nothing like being a grown ass adult in the wheelchair at a children’s hospital… I felt so out of place. And even in a childrens hospital people have no concerns staring..
After another week down, 27 weeks, to delicately put it I started bleeding. Which led to more ultrasounds to make sure the girls were okay but they couldn’t find the source. They checked my cervix and it was now at 3cm. Not great news but not the worst news either.
They decided to have the NICU consult team come visit me. Wasn’t my favorite conversation. So much so I called Matt crying after that conversation, he calmed me down and told me “Everything was going to be okay.” At 26 weeks 25% of survival, but unsure of Jocelyn’s chances at all. At 28 weeks 50%, still unsure but certainly less of a chance for jocelyn. Goal was to make it to 30 weeks, then 32 then 34. Chances of survival with minimal complications related to prematurity.
After about a week and a half stay in the hospital things started to get worse, contractions started back up again, this time fluid and rest isn’t slowing them down. Here goes talks with the doctor. She checked my cervix again 4cm now. Fantastic. So I agree to try a Magnesium bolus. So no food again. IV is bad again so another stick. Magnesium is used as a muscle relaxer. Since the uterus is an enormous muscle the idea is that it will inhibit the contractions. That also means it weakens every other muscle in your body. Oddly enough also helps premature babies from having major brain bleeds after birth. Win win right! Well like anyone who has ever had to have it you know. It’s freaking awful. It doesn’t feel great going in kind stings for the first few minutes. Then out of nowhere you feel unbearably hot and sweaty coupled with some loopiness, along with your whole body just feeling like a huge bowl of Jell-o. The whole bolus was no more than 1hr but the side effects lasted well into the night. Matt said I was acting sort of like a tired drunk. Asking and saying just some silly things that made no sense. But that worked! Stayed steady at 4cm dilated and bleeding slowed down significantly so no more contractions were showing up on the monitor. For now. And I get to eat!
However two days later it started back up slowly and by the third day they decided now we try Indomethacin. Another drug that helps we can do 72 hours to see if it helps and it also did. And another shot to the buttocks of steroids. I’m holding onto strings at this point. Something will just stop it and hold off the labor process long enough for me to hit my 30 week goal. But like everything else once it wore off, contractions started slow again but still there.
They decided to move my room closer to the nurses station, it’s like they knew… So we tried magnesium bolus again. This time wasn’t as bad, maybe I was used to it, maybe I just was willing to put up with anything to make my goal. I’m 28 weeks and a few days now and less than two left to go.
Checked cervix again after 4cm, maybe 5cm but still within the threshold to wait. Sleeping at this point is a chore that i’m not very good at. Bleeding started again. Got up. Went to the bathroom. Then went right to the door to get a nurse and let her know. Doctor comes in at 5:30am to check the cervix. Still 4cm to 5cm. Sweet! She tells me to try and get more sleep. Matt was staying the night and sleeping on the world’s worst couch bed. In and out of sleep as well. I’m sure my constant need to get up and pee wasn’t conducive for good sleep.
7am rolls around and I have just given up on sleeping and I’m preparing to order breakfast. Doctor walks in again and asks me how I’m doing. I’m sure I answered with something sarcastic probably along the lines of, “Ohh ya know just fat, hungry, and keeping my legs crossed.” She flashed me a smile and said she wanted to check my cervix. Uhh alright I guess. Usually I have an idea why but this time felt out of the blue and she didn’t give me much of a reason. She checks…
“Ohh boy..”
“What?”
“You can put your legs down, you’re at 6cm and it’s go time. I’ll get everything together except surgical start time for 10:30am. We are having babies today.”
Matt shoots up like a Halloween prop at a haunted house, “What?! What did you say?! 6cm? Are you sure?”
She just smiles, “Yes I’m sure. Your nurse will be in shortly for prep but I am going to order you another magnesium bolus.”
I’m just in tears. What about the girls, what about Jocelyn?! What’s wrong with me? Why couldn’t I do this? Just running the low numbers the NICU gave me over and over again in my head..
Matt cried with me for a minute then looked at me sternly. “I know you’re scared I am too, but I am not going to let this ruin the happiest day of our lives, getting to meet our girls.”
It’s been one hell of a week. Let’s just start with my nurse leaving early last week with a migraine. No big deal except it’s a new symptom of COVID. Awesome. So now she’s out a couple days getting test results.
Girls have been unbearably whinny cause they both are breaking through teeth. Lucy’s top front teeth and jocelyn has two molars coming in. If you think a teething baby is bad try teething twins for a go. They cried, I cried. It’s a lot to soothe two babies at one time or even one at a time since they both literally brawl for my attention or the seat my lap provides. Yes I tried multiple teething remedies. However they dont always work.
Been feeling stretched thin lately after multiple appointments last week, girls had shots done, losing the help of our nurse for a few days, Matt going back to work to help the impending natural disasters headed America’s way. And today the car wont start. YIPPY.
Dont know whats wrong yet, Matt will have to diagnose it when he gets home. Hoping its not something too serious as it makes me anxious being home with Jocelyn and not having a working vehicle. The stress has been a bit overwhelming lately. Hoping things calm down here in the next week or so.
Nurse is COVID negative and was able to come back this afternoon. So things are already looking up I guess. I apologize for a hiatus but i’m working on some more pieces as we speak that are hopefully more intriguing than this.
Thank you for hanging in there for more to come this week!
After 16 months I am finally ready to publicly share Jocelyn’s heart condition in its entirety. I have put this off for a lot of reasons. One being I didn’t want people if they knew how complex to look at her differently. I never wanted people to set expectations for her physical or mental abilities. What I have learned however is that most people won’t ask me or my husband directly. So like whisper down the lane, I have heard things other family members or friends have said regarding her heart, how it works, or the surgeries she will need. If you know how whisper down the lane works, then you know most of what’s being shared is grossly wrong by the end. Believe me I know why some people don’t ask, maybe they fear my reaction, maybe they think it’s something I’m not willing to share since I never put it on Facebook or any public forum. I guess some of that last part is true, but I felt like I was mostly trying to ward off unsolicited advice or opinions from people who simply just don’t understand. It’s honestly really hard to be this vulnerable though. To be ready to get asked hard questions, some I may not ever really know the answer to. While her heart condition is a very big condition she does also have some other unique things wrong that complicate her much further, but I will discuss those at a later date. Today we are going to let her heart shine!
Here is her official diagnosis’s at birth:
Hypoplastic Right Heart Syndrome (HRHS)- right ventricle of her heart is small and under developed
Pulmonary Atresia- no main pulmonary artery segment to carry blood to lungs
Right Ventricular Aorta- instead of starting at the left ventricle it feeds the body with blood mainly from the right
Large muscular VSD (hole between both ventricles)
Bilateral Superior Vena Cava- two superior veins coming from the upper body instead of one
Discontinuous branch pulmonary arteries coming off aorta
Two more were added after her Glenn open heart surgery :
Mild to Moderate mitral valve regurgitation- valve between left atrium and left ventricle leaks
Right ventricle as a whole mildly pumps
Like I said above she is relatively complex so I’m going to do my best to explain on top of the best pictures I have in demonstration of her heart (mostly because i’m a visual learner).
Let’s start with what a normal heart looks like compared to her heart at birth:
(Full disclosure some of these drawn pictures shift a bit, in that the information able to be provided by surgery and echocardiograms gets better to see as she gets bigger)
Because she is mainly classified as a Singular Ventricle child our best options were the 3 Step surgical plan. This step by step surgical interventions creates a one way path for blood to get to the oxygen from the lungs and to the body and low oxygenated blood to get back to the lungs. The surgeries goes as follows:
BT Shunt- For this first surgery they added a shunt off the descending aorta along with using Gortex to connect both pulmonary arteries coming off aorta to provide a pathway to her lung that was as even as possible. This allowed her to come off a medication called prostaglandin that was keeping her able to pass some blood to her lungs to be oxygenated. Normal blood saturation levels for this procedure should be above 75%. Jocelyn sat mostly in the 80-82% range. Most children can receive this surgery about 4 days post birth however in our case Jocelyn didn’t receive hers until about 5 months after birth. We had other complications to overcome first. Unfortunately I don’t have a post BT Shunt drawing however in the post glenn one you can see the connected pulmonary artery they built under her aorta, just looks like a tunnel type of vessel.
Glenn- This next step surgery they disconnect the superior vena cava (SVC) from her right atrium and connect it to her pulmonary arteries they made for her in the previous surgery. In Jocelyns case she had two SVC’s, therefore both were disconnected and reattached to those arteries, making this a Bilateral Bidirectional Glenn. Normal blood saturation levels for this procedure should be mid to high 80%’s. Jocelyns currently sits around 88%. Most cardiac kids have this second surgery around 5-6 months of age. Jocelyn had her BB Glenn at about 9 months old. In her case we found out she was in heart failure and that we were lucky to be able to get her out so she could have this Glenn procedure done. No she is no longer in heart failure and I will touch more on that story later on.
Fontan- This is hopefully the last open heart surgery. This surgery will require the doctor to disconnect the Inferior Vena Cava (IVC) from the right atrium and reconnect it to the artificial pulmonary artery he previously built. This completes the final stage of the loop. Her blood saturation levels should sit in the low to mid 90%’s. Most cardiac kids will receive this last one as early as 2 years old and as late as 3.5 years old. It really depends if some kids need it sooner. By that I mean their saturation levels slowly start to dip. So no I do not know when jocelyn will have this last surgery but i’m sure she will let us know.
In her case she will also have some lymphatic work like I mentioned in a previous post. If you’re interested in reading that story please feel free to check that out.
I plan on letting her live the most normal life I can provide: soccer, gymnastics, dance- whatever she desires to do. I will implore the same normality when it comes to schooling. I will set no limitations to her success. Lucy is a good support system. She pushes Jocelyn to try her hardest to do the things Lucy can. And for that I’ll always be thankful she has a lifelong best friend and confidant.
Congenital Heart disease (CHD) is a lifelong battle. While the numbers are mainly stacked for our kids it’s still a vicious disease and unfortunately not every child wins the battle. One in a hundred babies are born with a congenital heart defect and more common than childhood cancers. It’s important we raise awareness for funding in research and therapies for these children. Support is important so I always advise every parent with a CHD baby to find theirs.
Jocelyn is a tough cookie and has undergone way more then any child should ever have too. She has never been shy in making her own way through this. So like many parents we follow our child’s lead and pray we are supporting them in every way possible down the right path. I am so immensely proud of her and always in awe of her strength.
Thank you for taking the time to read and learn all this, I know its not easy. I just hope I have done it justice in my explanation. Please reach out with any questions here, facebook or anonymously. Im ready to share no matter how tough.
“Sometimes when i need a miracle
I look into her eyes and realize I have been given so many.”
Following My Hearts 