Daydreaming of 6 Months!

When the babies were born on May 18th, both of them were admitted to the Johns Hopkins NICU.  We were able to visit them while I was still confined to a hospital bed due to my high blood pressure, but not allowed to hold them and barely allowed to touch them. They both looked as though they were clinging to life and we knew so little about what was going on at that point. I just knew that my precious little babies, that I made from scratch had IV’s, wires and tubes coming out of every part of their tiny fragile bodies.

We went there everyday and were told terrifying things, like “Jasmine has brain damage and we are monitoring her for seizures” and “Zoey just can’t breathe on her own and is having episodes of apnea often.” And even more, “Jasmine in in DIC and has a heart defect,” and “Zoey has a mass on her adrenal gland.” And worst of all was all of the “We don’t know” answers we often received, especially in regard to Jasmine’s DIC and brain bleed. 

I remember telling Aaron that when I was feeling overwhelmed with all that the girls were going through, I would think of them at 6 months old... happy, healthy and thriving. I’m never one to wish away time,  but I found myself doing it often while they were in the NICU. Looking at their precious little faces, holding their tiny hands and wishing it was tomorrow already, that we could go home already. And every time we received bad news or they told us the girls had a setback and were further from going home, I found myself daydreaming of them at 6 months old. Happy, healthy, thriving and far away from this place.

After an anxiety-filled nearly one month stay at Hopkins and a week long stay at AAMC, the girls were able to come home! It was relieving and exciting but also scary and lonely with the Covid pandemic still raging. No one could visit, or hold them or take the big girls somewhere for a break. And I was terrified that out of the small amount of people we did see, someone would give my family or my tiny babies this ugly virus.  That we’d be separated or wind up back in the hospital, especially because they were still so medically fragile. I found myself again daydreaming of my beautiful girls at 6 months old. I was getting maybe 2 hours of interrupted sleep at night, struggling with my own health and well being and wishing for 6 months with all my heart. “If we can just make it to 6 months, everything will be different. Everything will be easier,” I would say to myself.  They would be happy, healthy, thriving and far away from this pandemic. 

Then in July, we found out that Jasmine was still very sick. Her liver was not well and a routine visit turned into a hospital admission and turned me into a blubbering mess. Rounds and rounds of tests and genetic panels and nothing was coming back conclusive. I found myself again, wishing for her to be 6 months old and for this to all be behind us. After a week long stay we were sent home with a quasi-diagnosis of a rare genetic disorder that meant a liver transplant was in her future. As we were monitoring Jasmine’s bloodwork to see if she was getting better or worse, she indeed got worse and was readmitted to Hopkins in early August. She went in for a liver biopsy and more precise genetic panels as I sat at home (one parent only Covid rules) wishing and praying for good results and again wishing away the time. Wishing to fast forward to a time where my baby would be healthy and could be at home with her sisters, with me. “6 months,” I prayed, “please let her make it to 6 months old.”

We left again with no real answer for her liver’s condition but did have some follow up bloodwork that showed she contracted the CMV virus sometime after birth, which took a toll on her poor liver that was already damaged from the hypoxia she experienced at birth. The longer we were home, the better Jasmine got. Her numbers looked better. She looked better. And by the end of September, we all felt better. And 6 months old wasn’t so far away. Happy, healthy and thriving... far away from liver panels and genetic disorders.

Fast forward to now... Zoey and Jasmine are 6 months old.  They are a half a year old?! As much as I dreamed of this milestone, I still can’t believe it’s here. This milestone means so much to me, to Aaron. These tiny little 4 pound babies are now our chubby-cheeked, not-so little 15 pound babies.  They are such a light in all of our lives and they do something new almost every day. Their smiles, giggles and belly laughs make up for all the scary, terrible things we went through with them. And sometimes when I look at their sweet little faces, I find myself wishing to freeze time, instead. Let’s just stay here for a little bit longer. Let me hear that adorable giggle again, let that sparkle in their eyes linger, allow their little fingers to hold tightly onto my shirt a little longer. 

6 months old. Happy, healthy, thriving and far away from all they’ve been through. Proving every day that they are fighters, resilient and miraculous. 

They made it.

A Fetal Blood Sampling turned C-Section

On Sunday evening, I asked Aaron to take one last picture of my belly before we had the babies.  He obliged but told me that they would be in there at least a week longer.  On Monday morning, Aaron and I headed to the hospital for our Fetal Blood Sampling. I still had a rotten feeling in the pit of my stomach that we would probably be delivering the twins that day too. So we brought our packed hospital bags, filled with snacks, clothes, toiletries and itty bitty baby clothes.  When we got there I was admitted and had to take a Covid test that gave results in 30 minutes. Aaron didn’t have to get tested which I’m assuming is because of a shortage of those particular tests. It wasn’t so bad but the waiting was a bit rough. I kept thinking about what they would even do if I was positive, but thankfully my results came back negative!

We got settled in the PACU, the twins were monitored and then they started prepping to take me back for the Fetal Blood Sampling. The protocols just changed last week & Aaron was going to be allowed to go back with me for the sampling which was just the absolute best news. He is my rock and I would have been a basket case without him. When we went into the OR, they asked Aaron to stay out so they could start an epidural for me, but then time became of the essence for the matched platelets on hand and they had to skip the epidural. That meant only local anesthetics for me and an order to stay still while they placed the needles through my stomach and into the girls.

When the procedure started, apparently Baby A was being a crazy lady and was extremely active. Due to this they had a hard time getting her with the sedative needle so they could start the process of sampling the hepatic vein in the liver for a platelet count. The procedure is so incredibly uncomfortable and hard for me and I was getting very frustrated with the time it was taking, especially knowing they had a whole other twin to sample. I was on a tilted operating table, contracting and unable to move or even breathe differently for fear of causing complications for the twins. My blood pressure was very high and they were doing their best to bring it down.  Aaron talked me through what they were doing throughout the procedure because I couldn’t see but also because I was crying throughout the procedure due to pain and feeling out of control. I had another nurse who was assigned to me on the other side and she was very kind and sweet to me even though I repeatedly tried to move my arm away from her to touch my belly and give it some relief from hanging sideways on the operating table. After about 2 hours of both of my doctors trying and going back and forth, they finally sampled the vein and Baby A’s platelets were 95,000– which is pretty decent but still needed an infusion of platelets. They had no good way to get to Baby B’s hepatic vein and the time for using the platelets was running out.  They decided to sample Baby B’s blood through her umbilical cord. Baby B’s platelets were 117,000 and while that’s close to normal, she was still infused with the matched platelets.

I was wheeled to recovery and while there, they were having a hard time getting both girls on the monitor due to my frequent contractions.  My blood pressure was still sky high, my platelets were extremely low and so the doctors met as a team and decided that due to fetal stress and my new diagnosis of preeclampsia, that they needed to do a stat C-section.  I got prepped and got my epidural for my spinal block, while Aaron waited outside of the OR. I kept asking for him and eventually they allowed him back in as they were already cutting into me.  He kept me calm, we were talking about what the girls would look like and hoping we would know which was Baby A and which was Baby B and they wouldn't get them switched up.  The two baby teams got their beds ready and made sure all the equipment was in place for the girls.  Everything and everyone was pretty calm... and then suddenly things changed.

Baby A came out first and she cried pretty much instantly and we watched from afar as they poked and prodded her.  Everything seemed okay but she stopped crying and they were smacking her hands and feet trying to get her to liven up a bit which was scaring us.  Baby B came out next. She wasn't crying, she wasn't breathing and she was purple in color.  We could barely see her through all the doctor's surrounding her and I began to panic and cry.  I was asking, "Is she alive? Is she dead? Please tell me if she's alive!"  I asked Aaron to stand up and go over so he could see what was going on as I obviously couldn't.  He stood up and said that he thought he saw her moving.  He went over and he was able to cut the umbilical cords on both of them.  At the same time, the doctors were cutting my tubes out and I was crying hysterically, asking everyone what was happening.  Aaron came back over to tell me that they were both alive and being worked on. He wasn't allowed to hold them and doctors brought them over to me while I was still strapped down to let me get a picture with them.  I was able to kiss Baby A on the cheek but I couldn't get close enough to Baby B and after the picture, they whisked them both away.

I continued to cry throughout the rest of my surgery, which took longer than expected because I was hemorrhaging and losing a lot of blood. Aaron held my hand until the surgery was over and we just sat there with our heads together as he reassured me that it would all be okay. The next couple hours were a blur, we were sent back to recovery and my blood pressure was still uncontrollable and they transferred me to Labor & Delivery to receive a magnesium drip to help combat it.  The side effects were pretty awful and flu-like and I had to be on it for 24 hours.  I was tested every hour to make sure I wasn’t going to have a seizure and that my reflexes were working.  I was able to be wheeled to the NICU in my hospital bed to see the girls and get some kind of update.  They were pretty bad off and while it was reassuring to see them, it was also awful to feel like I couldn't do anything for them.  I was wheeled back to my room and while receiving the magnesium and waiting for the spinal to wear off, I laid in the bed just feeling so upset and out of control of my life. I felt like my body failed me and feelings of guilt about the delivery were consuming me.

 My nurse, Sara, was the best nurse in the world and she was so helpful and willing to do pretty much anything to help me feel better.  She was funny and warm and really wanted to help Aaron and I through this. She is also a twin and told me she would send healing twin vibes to the girls.  I started pumping with the help of Sara and Aaron was taking my colostrum over to the NICU every few hours.  He spent time there trying to get updates about the girls but there were a lot of uncertainties  and a lot of doctor's saying "we don't know yet.".  Over the next few days we were transferred to the postpartum wing and I think I got maybe 30-40 minutes of sleep at a time.  My blood pressure was so high that I was being checked on constantly and in between getting checked on, I went to see the girls in the NICU or pumped.  My bloodwork showed the signs of my hemorrhage with low hematocrit, red blood cells and hemoglobin which contributed to my postpartum anemia.  I don't think I have ever been so exhausted in my life.  I wasn't sleeping or eating and my anxiety was at an all time high.  I ended up being readmitted to the Labor & Delivery ward to get IV meds for my blood pressure and try to figure out a regimen that would work for me.  I spent the night there with my favorite nurse, Sara, and she made sure I was left alone to get some sleep.  I was sent back over to the postpartum wing with a new blood pressure medicine and orders to sleep and eat!

The twins have been making progress in the NICU, but Baby B is much worse off than Baby A.  It's really devastating to watch one twin make strides toward normalcy and watch the other struggle.  You want to be happy for the good news but you can't help but be upset about the other news.  The worst part is that for the first few days, they just kept saying that Baby B was "very sick," but couldn't tell us why.  The doctors and nurses were doing everything they could to keep her stable but the lack of answers was not only anxiety-inducing, it was often infuriating.  One thing we did know is that both of the girls are feisty as hell.  They are definitely working hard and fighting for their lives and that makes us feel so proud and reassured. We are happy that they are currently stable and the doctors have figured out how to support both of the girls in the best way possible for them.  It's going to be a long road, but we feel confident that it will lead to a beautiful destination.  Please keep our baby girls in your prayers and know that when we feel comfortable updating you in more detail about their health and well-being, we will. Thank you all for your love and support. ❤️

Introducing the Wright twins:

Jasmine Rose Wright (Baby B) & Zoey Jade Wright (Baby A)

All the Worries in the World... and then a Pandemic

It’s no secret. I’m a worrier. I’m an anxious person and most of the time I would consider myself to have high-functioning anxiety.  Being pregnant is already a very worrisome time for most women. You worry if they’re healthy, about how many times they’ve kicked today. You worry about what you eat, especially if all you’re craving is sweets or things with too much salt. Am I exercising enough? Am I exercising too much? Is it normal to feel like this? What is happening to my boobs?? So. Many. Worries.

Being a NAIT mom just adds to list of worries in a very scary way. Are they alive? Are they bleeding? Am I killing them slowly or are they strong enough to fight me off? Is treatment working to prevent bleeds? Being a NAIT mom of twins is similar, except the little information that they have on singleton NAIT pregnancies is cut down to literally nothing for twin NAIT pregnancies. Ask a question, any question to a world renowned doctor about NAIT twins and their answer is almost always, “We don’t know.” Super reassuring in case you were wondering.

Besides all of these worries that I’ve been carrying on my back since I found out we were pregnant, there just so happens to be a worldwide pandemic happening as well. Since our state was declared in a State of Emergency, restrictions have gotten tougher across the board. Being forced into quarantine and extreme social distancing is absolutely necessary and vital to kick this pandemic’s ass and stay healthy. However, being pregnant, it has been both a blessing some days and a curse on other days. I am enjoying being able to lay in my bed longer in the morning, pee whenever I want and spend quality time with my big girls. Another bonus, I don’t have to wear a bra all day and I can live in leggings or pajama pants.

On the flip side, it has been very lonely. This is my last pregnancy and I dreamed of all of the things I would do, how I would capture it and celebrate this final chapter of this part of my life. Obviously most of the social things I wanted to do, I really can’t.  My own mother can’t come see me and if she does, she can’t touch my belly when I feel a big kick or hug me when I’m feeling defeated. My pregnant friends can’t commiserate with me and we can’t have pregnant girls nights like I imagined when I found out we were all pregnant together. I don’t get to see my co-workers and my students and receive that extra special attention that only pregnant ladies get. My brothers and my Dad haven’t seen me in person in weeks and I haven’t been able to share any of my pregnancy with my sister-in-laws either. My sweet grandmother and my extended family can’t celebrate with me or come to a baby sprinkle.  All of these things may seem trivial and in the grand scheme of things, yes they are... but that doesn’t really make me feel any better. This is my last pregnancy and my last chance to share it with my loved ones, and I can’t. That feeling sucks. It’s something I think about often. I also think about how devastating it could be if I caught the virus... not only for me, but for Aaron, the girls and the twins. The worries literally never stop.

Aaron has been working nonstop trying to get his house flips finished with little to no workers due to essential worker restrictions, leaving me to chase, or should I say waddle, after these crazy ladies I live with by myself. There are some days that by noon, I’m done. My back hurts, my Braxton Hicks are out of control and I just want to cry. And there are other days that I’m so incredibly happy and fulfilled getting to stay home with them every day. I’ll never get these days back and I’m especially grateful for my time with Izzie who would normally be at school. I’m loving all the extra kisses, hugs, snuggles and giggles, especially because life is about to change for them in a big way. My biggest challenge is juggling my responsibilities as a teacher with my responsibilities to my family and honestly some days I feel like I’m failing at both. I’m required to teach live on Zoom 5 days a week, have virtual office hours, collaborative planning meetings and prep for the following day. Then I also help Izzie with her school work, take care of the house and try to get nesting type things ready for the twins. I also do my best to make sure the little girls feel paid attention to and involved as well. It’s a lot. And I can handle it. But it’s a lot.

I think the thing that has been giving me the most anxiety and making me the most upset is thinking about my Fetal Blood Sampling and my delivery. At my last baby appointment, Aaron was not allowed to accompany me due to the strict Covid visiting rules. My appointments are at the hospital and I was freaking out about someone breathing on me or touching me. My sister-in-law, Jules secured me a mask and I brought gloves and sanitizer. It was so eerie. The hospital that I’m used to visiting was not there. The hustle and bustle of nurses, doctors and patients was non-existent. I went through multiple “security screenings” before I could get to my appointments and the waiting rooms had been spread out so that you weren’t able to sit next to anyone. It was weird. During my sonogram, I was told I may be able to FaceTime Aaron but my tech said no. I said I understood and then tears rolled down my face as she began the sonogram and I saw the twins little faces. I know some women always go to appointments by themselves, but I don’t. Aaron always comes and would never miss a sonogram. This is our last pregnancy and he was pretty devastated that he couldn’t come or even be involved.  It was still amazing to see our babies, ensure that they were healthy and get confirmation there were no bleeds, but it was also just... different.... lonely.

When I met with my doctors, that’s when I lost it. I asked about my Fetal Blood Sampling and my C-section dates. We talked about it and when I asked about Aaron coming into the operating room with me, I was met with shaky eye contact and “Sorry, no.” When I inquired as to why, I was told if I was delivering vaginally, Aaron could be there but since it was a C-section in an OR, he couldn’t be by my side.  I was a blubbering mess and I was having a hard time keeping it together. I asked how that was fair, explaining that a c-section for me isn’t a choice, it’s a necessity and the only answer I got was that they couldn’t waste any PPE on him due to nationwide shortages. I could tell my doctors felt awful having this conversation with me. I asked if I secured the PPE for him if he’d be able to be with me and see his last babies being born. The answer was “I don’t know.” My babies will most likely go to the NICU for monitoring after delivery and because I’m getting my tubes tied, I was told they would help me look at them but I wouldn’t be able to hold them until I met them in the NICU.  Aaron wouldn’t be there to hold them next to me and we wouldn’t share that moment together. It would be a stranger to hold them first and I would get a glimpse.  As I tried to hold it together, I prayed that maybe things would change by then... and I dreaded talking to Aaron about it.

When I left my appointment, I met Aaron in the pick-up loop and as soon as I got into the car, I lost it again. Through my unintelligible blubbering, Aaron was reassuring me that whatever happened it would be okay, but he was also very upset. Seeing him upset just made me even more sad and honestly, mad.  It may seem dramatic, especially with the way the world is right now, but it felt like we were being robbed of our last delivery, of the moments that follow. The ones you remember always.  We wouldn’t be together and we would possibly have to meet them separately in the NICU. We both pray and hope that this is not the way it will go when the time comes and we continue to try to stay positive.

A good friend of mine told me something that has resonated with me and I’ve thought about it a lot. She said, “I hope you let yourself mourn the expectation of what you thought your birth experience would be. Don’t let anyone tell you some bright side BS.”  So, I’m going to put this out to all of my pregnant friends. Yes, the world has big problems right now. You might feel selfish for being upset about missing out on “normal” pregnancy things, but you shouldn’t. You are allowed to mourn what you imagined your pregnancy or birth to be. You’ll never get these moments back. Should you feel grateful for your health and your family’s health? Yes. Should you feel blessed to have a home and all the comforts that come along with it to quarantine in? Yes. Should you feel guilty for wishing it was different? No. You are allowed to have sad, mad or unidentifiable feelings about your situation without taking away from the seriousness of this pandemic. But know this; you are strong. You are making a human from scratch, and even if you feel like it, you are not alone. I am with you. We can do this.

My Fetal Blood Sample is scheduled for Monday, May 18th & my C-section during the week following that. I will keep those interested updated. As always, thank you for supporting our family, especially now. Sending you our love.❤️

A Day in the Life of my IVIG Treatments

So far, I have had a total of 13 IVIG treatments this pregnancy, and honestly it sometimes feels like I’ve had 100 treatments. IVIG treatments differ for everyone and it’s something that I have to do to keep my babies healthy. It can be grueling both mentally and physically but there is literally no other option for NAIT moms to have a healthy pregnancy.  I thought I would take some time for those interested to outline what it's really like to have my treatments, before, during and after.

Before:
My IVIG treatments are every week on Sundays in my home with the same nurse (Maggie❤️) and usually last around 6-8 hours depending on a variety of factors.  Every 3 weeks on Wednesday the Home Health Care company calls me to set up a delivery of my IVIG supplies. This shipment has 4 weeks worth of medicine and supplies my nurse will need to administer it, such as IV start kits, fluids, tubing, saline flushes and alcohol. The IGG has to be refrigerated which pretty much takes up the entire top shelf of my refrigerator. I store the rest of my supplies in a waterproof storage container that I keep on top of the counter as out of the way as possible. The girls love when we get deliveries because boxes are the most fun toy ever and bonus... there’s sticky bubble wrap too!

On Friday and Saturday I have to drink a TON of water to ensure hydration for my veins and to keep side effects from the IVIG at a minimum.  Every Saturday evening, I clean up my main living room and prepare the supplies my nurse will need in the morning for my treatment. This includes my pump, my IV pole, saline, IV start kit, saline flush, tubing, alcohol and gauze. I also have to remove one weekly dose from the refrigerator and let it acclimate to room temperature overnight. I’m so used to this by now, it’s just part of our weekly routine.

During:
On Sundays I wake up at 6:30am, chug my water bottle and get into a hot shower to pump my veins up. Then I take my pre-med course of Benadryl (in case of allergic reactions) and Tylenol (to alleviate the headaches). I come downstairs and let my nurse in and get ready for my dreaded IV.  No matter how many times you get an IV, it’s never fun. It always hurts and it always sucks. My nurse is one of the sweetest people I know and I’m so lucky that she is so good at IVs. My veins from my previous treated pregnancies are basically non-existent. They’ve literally run for the hills or become agile little things and roll around to get away from the needle. The only ones I can use this time around are in my forearm or my elbow. As long as I’m hydrated, my nurse has been able to get my IV started on the first or second try. It really sucks when she thinks she has one and she’s moving it all around trying to see if it’s all the way in my vein or just superficially. Not gonna lie, that really hurts. Usually she gets a good flash of blood into the catheter and we are good to go.

Next I get hooked up to the hydration (saline bag) that has to be run on my IV pole. The higher the pole, the faster it goes into my vein so we usually put it up on a chair to try to get it go quickly. This hydration is KEY to alleviating the gnarly headaches that come with IVIG. I had to fight to get my hydration increased so that I could actually function on the days after my treatments and finally got it approved. During that time, my nurse transfers the IGG solution from the glass bottles into the bag that will be used with my pump. When the saline finishes, my nurse then connects my IV up to the pump and begins the IVIG. My rate slowly goes up until it gets to my max rate that we’ve worked up  to, which right now is 190. I need to get it up to at least 225, hopefully 250 by the time I have my double treatments so that it won't take 12-14 hours to complete.

During my infusion, I often sleep (thanks Benadryl) and watch tv with my nurse. We love HGTV, especially Love it or List it and Fixer Upper. I play with the girls and drink, drink, drink! My nurse has to stay with me the whole time just in case anything were to happen. She also takes my blood pressure a few times an hour to make sure I’m not having an adverse reaction. The girls love to help take my blood pressure and my nurse is so accommodating with them. I can usually feel my headache coming around 11am, so I try to eat something or re-up my Tylenol to get ahead of it.

There are sometimes when my pump screams (okay, beeps) at me the whole time about being occluded, or my vein blows and infiltrates and my IV has to be started again. Those times are the worst for me and can be so defeating. It actually happened during our gender reveal right when we were supposed to be leaving to go to the field to reveal and I kind of lost it. I always try my best for the girls sake to keep myself together and not cry when I’m discouraged or upset about the treatments but I couldn’t hold it in that time. It’s such a silly thing to get upset about, but sometimes the stress of it hits me all at once. I was super embarrassed that I cried and took a few minutes to get myself together.  After a few failed attempts, my IV was restarted and everything turned out wonderfully for our reveal.

After:

When the infusion is done, my nurse removes my IV (sometimes I get impatient and remove it myself), takes one last blood pressure and is on her way. I normally try my best to rest, which is hard when you have 3 kids who all want your attention.  I also try to keep up with my hydration and my Tylenol. I usually take my migraine medicine as well to try and get ahead of the impending headache. My side effects are usually at their worst Sunday night and subside through Wednesday. My migraine headache is the worst on Sunday but lingers through Tuesday most weeks. The body aches, belly issues, fatigue and joint pain usually peak on Monday and Tuesday and last through Wednesday. I pretty much bruise every week as well from the IV, which was attributed to my slight anemia and crappy veins. 

The side effects are definitely annoying and sometimes causes me to feel defeated or irritable because I just feel so crappy, but it’s my normal for now.  I’m used to it and so is my incredible husband. Even the girls understand, which breaks my heart sometimes.  They ask me “Mommy, are you feeling better today? Can you play with me? Do you want me to lay with you?” The mom guilt is real and most days I push through and over exert myself so that they don’t feel like Mommy is sick all the time. I don't want to miss anything and I want them to feel that Mommy will always be there for them. Before this quarantine, work was rough some weeks too but my support system there was absolutely the best and for that I’m so grateful. I’m hoping that this new online learning will work out for me with my treatments too, but we shall see.

I honestly could not do this without my amazing support system. I’m so grateful for my patient and loving husband, my sweet girls and my wonderful nurse. I also love and appreciate every one of my friends and family that has reached out to me, dropped off food or simply checked in on me. We are living in crazy times right now and I try my best to keep perspective that in the grand scheme of things what I’m going through is small. And what I’m going through will keep my sweet little babies alive and healthy. That’s what matters. I get to see them often due to the extra ultrasounds and it is so reassuring to see them growing and thriving. When they are kicking and rolling around, I feel a sense of peace also and thank God that they are doing well.  Seeing the faces of my beautiful Izzie, Kenzie and Hazel also helps to motivate me and keep my spirits up when I want to quit, because treatment works.  They are living proof. 

Thank you all for reading, supporting our journey and sending us so much love. We are forever grateful to each of you. ❤️