I am still waiting for my letter from CCBC to find out if I made it into the Respiratory Therapy program starting this Fall. Hoping to be Class of 2017! A long time coming, taking classes here and there for the last 15 years. I've been keeping myself busy sewing :) My passion!
Just a few of my latest creations :) More to come!
It has been nearly 2.5 years since I have written a blog post, but today this one felt necessary. The last time I wrote a blog post was the end of Anya's story, the day of her funeral. Today has been 3 years since the day I received Anya's diagnosis, at her 19 week anatomy scan. It has been 3 years since my world turned upside down and has never been the same since.
To the Ultrasound Tech who diagnosed my baby's congenital heart defect,
I wanted to thank you. Thank you for being excellent at your job, and taking your time to get the images you needed of the news that would change my life forever. You were nervous and quiet- but I didn't notice it then. You barely spoke a word, except to ask me if I was familiar with looking at ultrasound images. I said just a little bit; however, I was too ignorantly blissful that I was just moments away from finding out the gender of my unborn child growing in my belly. At that moment, I couldn't have imagined of seeing what you were looking at.
You spent nearly an hour focusing on my baby's heart. Her little, miraculous beating heart. You looked from every angle you could get as clear of a picture as you could. I vaguely remember when you looked at her heart from the bottom angled upward. I didn't understand why then, but was too excited to care. I just wanted to hear the words, "It's a ___(fill in gender here)."
You were so focused on what you had seen, that you had forgotten to tell me my baby's gender until I had asked. You had my chart in your arms with dozens of ultrasound photos on a strip of photo paper long enough they were nearly trailing the floor. I didn't notice then. You were nervously trying to run out of the room to get the perinatalogist, leaving me for a few minutes to bask in the excitement that you had just told me I was carrying a precious baby girl.
A little while later, you followed the perinatalogist back into the small, dark ultrasound room that you had left me in. You knew then that I realized something was wrong as you handed me a box of tissues. You stayed quiet as the perinatalogist said to me, "Your baby has a severe congenital heart defect called Hypoplastic Left Heart Syndrome. It is the most severe I have ever seen."
I was shocked, in disbelief, as the perinatalogist flipped through the dozens of images you had taken of my baby's heart, showing me an image you saved that showed no left ventricle, no mitral valve, and a closed aorta.
Thank you, ultrasound tech, for seeing through my blissful ignorance and diligently doing your job. You gave me the opportunity to plan and have my baby in a hospital that is equipped to handle HLHS, rather than finding out after birth and having her transported to a different hospital. You helped me to give my baby a chance at life, as short as it was I am thankful for the time I had with her.
Approximately half of congenital heart defects are diagnosed in utero. The rest are not diagnosed until hours or days after birth, or most unfortunately at autopsy.
To the moms out there who think, it could never happen to you- that is what I thought too. I did "everything right" too. Always ask at your baby's anatomy scan:
Do you see all 4 heart chambers?
Can you see all of the major blood vessels and are they connected where they should be?
Are the heart valves formed correctly?
Is the heart in the correct position?
Do you see both kidneys?
Is the stomach in the correct position?
Why should you care about congenital heart defect awareness? Because the day before my baby's CHD diagnosis, I wasn't a heart mom either.
This was one of my favorite outfits of Emoree's when she was a baby. At the time that I took this picture of Anya, I would have never dreamed it would be her last. I had so many more wonderful pictures to take of her, so many more adorable outfits for her to wear. If only...
Saturday, November 3rd, 2012. I got up at 6:30AM to get ready for work. I got dressed, took Anya upstairs, set up her meds for the day for my mom and gave her the lovenox injection. She was fussing, but I was running late for work so I gave her and Emoree a quick kiss before I ran out the door. My mom was sitting in the recliner holding both of my girls. At 7:50AM, I was almost to work and my mom called me, asking me how to mix Anya's formula because I didn't have time to do it before I left. I told her 25ml of water per can, shake it, put it in the fridge. I go to work and start my day. I started shaving down my first dog of the day, and my second dog didn't show so I took a phone call and took an extra. It was looking like a good day.
At 8:34AM, my cell phone rang. I answered it and it was my little brother, which is quite strange because we don't really talk on the phone, and he knew I was at work. Then he told me the words that will haunt me forever... "An ambulance is here. Anya is unresponsive." I could hear commotion in the backround. I don't even know what I said in response, or if I even said anything. I hadn't even hung up the phone when I looked up at Courtney and said, "I need to leave." She hugged me tight, and I ran out the door. In the car, I called my mom. She was hysterical and difficult to understand. I kept asking what happened, where are they taking her, should I come home or what hospital is she going to?? I finally got out of her that they were taking her to Franklin Square, so I drove there as quickly as I could. I think I even ran a red light...
I arrived at Franklin Square emergency room, and I was shaking and holding back tears as I walked inside. I asked if Anya had arrived yet, the lady at the podium told me she wasn't on the board yet but as soon as she was she would let me know. Finally, I saw the ambulance pull in followed by a cop car. I waited a minute before I went and asked the lady again if I could go see her. After what felt like forever, they walked me through a series of hallways to peds emergency. From that moment, my life changed forever. I walked down the corridor and immediately I knew where she was. There was police officers & paramedics standing outside of the open glass door, and inside I could see doctors and nurses rushing around. There were 18 people surrounding Anya, her lifeless little body, on the stretcher and they were all busy taking care of her. She was so pale, and her stomach severely distended. I paused outside of the door, until someone took my hand and walked me into the room. They had me sit on a chair behind the line of people who were trying to resuscitate Anya. The person who walked me into the room stood next to me and kept her hand on my shoulder. I got up the nerve to ask the question I was afraid to ask.. "Is her heart beating?" Quietly, the lady told me no. She didn't have a pulse. She stayed with me until a social worker came, then the social worker stayed with me. Finally, my mom and Mrs. Kathy showed up. My mom was not calm enough to drive so she waited for Mrs. Kathy to come get her. Someone pulled up a chair for my mom and she sat next to me and we both cried. Mrs. Kathy waited out on the hallway talking to the police officer. Meanwhile, there were so many people rushing around. I think I remember answering questions about Anya's medical history. Every 3 minutes someone would tell the nurse to give another dose of epi, and the whole time they were doing chest compressions and bagging her (pumping air into her mouth and nose with a manual vent). Nurses and doctors took turns doing chest compressions. At this point, I felt like she was gone.
A doctor came over to me and explained that she has not had a pulse for nearly an hour, and that after the next round of epi that she would have to "call it." I said okay and cried. I prayed silently with my mom, and I am not the kind of person who prays. A minute later, I heard someone say, "I found a pulse." At that moment, I felt relief. They continued to "bag" her, but chest compressions were no longer necessary. Within a short amount of time, they did a chest x-ray, put in a central line and an arterial line, put in an NG tube to try and suction her stomach (because they were having difficulty with her g-tube), and called University of MD for transport. When the transport team arrived, they decided to cut her g-tube (rubber hose) short so they could better suction it because her belly was severely distended and getting worse. The lady from the transport team told me that even though Anya wasn't stable, they needed to get her to University of MD as quick as possible to get her on ECMO (heart & lung machine). Soon after, they told us to leave and to meet them at University of MD PICU. Before I left I picked up Anya's hand to hold it and kiss it, and it was so cold and limp.
The drive over to University of MD was quiet. I silently thought about Anya's risk of brain damage, considering she was nearly an hour without oxygen. We got to University of MD before Anya did. We went up to the PICU and was greeted by her nurse, who was rushing around getting the room ready for her. I asked her if Dr. Kaushal was around, and she said he was on his way. She then told us we could wait in the Family Waiting Room, and that we would see Anya go by there when she arrives. It felt like forever until that actually happened, and I was more and more on edge until I saw them rush her down the hallway. I quickly got up and followed them to her room. They were still bagging her. They got her in the room and moved her off of the stretcher and onto the bed quickly. There was a bench/couch in the room that was out of the way from the commotion, so my mom, Mrs. Kathy, and I stayed there and sat and watched quietly. Ocassionally doctors came over to us and asked us what happened this morning. Over and over again, my mom had to repeat the morning's events and each time she cried. Anya was fussing, she was sitting in the recliner rocking her, she had pooped in her diaper and she got up to change her. While changing her, she checked her pulse ox and it was 88, and she was happy with that (Anya's goal sats were 75-85, so acutally 88 is a little high. Her norm is 78). She sat back down in the chair and rocked her. She thought she had fallen asleep, but didn't hear her usual loud, rapid breathing so she tried to feel for a pulse and them immediately called 911. She layed her on the table and did mouth-to-mouth CPR as they told her to, until the paramedics arrived 5 minutes later and took over.
Quickly they hooked her up to the ventilator. They started so many medications in her IVs I don't remember what they were. There were so many people and equipment in the room. Dr. Kaushal showed up, and again my mom had to relay the morning's events. They did an echocardiogram, and other than severe tricuspid regurgitation (which was previously classifed at moderate), there was no change in her heart that explained why she went into arrest. He then asked us to leave the room, he wanted to assess her and see if she needed ECMO. While waiting again in the Family Waiting Room, a doctor from Infectious Disease Control came and talked to me, asking me about everyone Anya has had contact with, what medications she was on, and so much more. She asked if there has been any changes to her, etc. The only thing I noted was that when she woke up this morning her forehead felt cool and clammy, but I disregarded it to how frequently she sweats, and that her "reflux cough" has been happening more than normal.
After what I had decided was long enough to wait, Mommom (Mrs. Kathy) & I walked down to Anya's room, stood outside the door, and just watched. My mom soon followed. What we saw was the nurse was still working on Anya. Dr. K was sitting in a chair, watching her numbers on the screen. After awhile, they welcomed us back into the room. Dr. K told us he decided not to do ECMO, but he wanted to get a head ultrasound and EEG to check for any bleeds and to monitor any seizure/brain activity. The ultrasound technician came in to do the head ultrasound, and the cardiologist asked her to do a bladder ultrasound as well because they were waiting for urine output, because Anya hadn't had any. The tech was happy with the head ultrasound, she said she didn't see any bleeds. She spent a little longer on the abdominal ultrasound, and the only comment I heard was that the bladder was collapsed (empty). This was a worrying sign. They did so many tests and there were so many machines I cannot remember everything they did. I remember the lady who came in and hooked up the EEG machine to monitor brain activity, because she was standing there waiting for ultrasound to be finished. I remember a chest x-ray or two.
My mom was standing there when I took this picture. She asked me why I was taking it, and I told her, "So a year from now, I remember what we came back from."
I was sitting on the bench in Anya's room and my absolute favorite night nurse, Elizabeth, came in and gave me a hug. This was somewhere between 3-5PM. She came in early, she said she had heard some fuss that one of the cardiac babies was back and when she heard it was Anya she came in early.
Sometime during the course of the evening, Elizabeth did a nasal swab for a viral panel, and I think another one for a pertusis screening. I think it was around 6-7PM that Anya's blood pressure started dropping. They took her off the ventilator machine and hooked her up to an oscilator machine, which they explained to me puts more force behind each breath to help inflate her lungs. The PICU attending explained to me that usually for about 6 hours after arrest patients are typically more stable before they start to decline again, and we were now past that 6 hour mark. I remember them suctioning her breathing and her stomach, both of which came out with blood tinged fluid. I started noticing that all of her scars were looking bright red and fresh, no longer the faded scar look they were the day before. Elizabeth was doing something (I think she was having an argument with the IV pump machine at this time), when I noticed blood tinged fluid leaking out of Anya's nose. I told Elizabeth about it, then I just stood there and held Anya's arm. I didn't want to sit, no matter how many times they told me to, I wanted to stand there with my baby girl and let her know I was there.
It was about 8PM when my Mom & Mom-mom left, my mom was going home to stay with Emoree for the night but Mrs. Kathy refused to let me stay by myself (no matter how many times I said Id be fine) so she stopped home and picked up some clothes for me and came back with dinner for me.
A doctor from Peds surgery came in to take a look at Anya, at this point Elizabeth wasn't in the room. At this point, All of the gauze taped to Anya's legs and arms from the emergency IVs they put in at Franklin Square were now blood soaked. There was alot of blood in her diaper from where they put the central line in her groin. The doctor opened up her diaper and I noticed some bloody goo that wasn't there before. I pointed it out that it was new, and he only asked me if I had ever seen that before and I said no. Soon after he left the room, but I made sure to tell Elizabeth about it when she came back in.
Ever since they got her pulse back at Franklin Square, and successfully transferred her to UMMC, I never once thought that I was losing her. I talked about her being inpatient for awhile again, picking up a new parking pass on Monday morning, etc. It didn't cross my mind that I was going to lose her that night, which is why I was okay with my mom leaving to be home with Emoree. I don't know if I was in denial, or in shock...
Around 10PM Mom-mom insisted that I get some sleep. I obeyed, got my pillow, and layed down on the bench and she sat next to me. Apparantly I was only asleep for a few minutes when Elizabeth checked Anya's diaper and found the bloody goo, and insisted that she wakes me up, but Mom-mom let me sleep until absolutely necessary. Later on, the goo was explained to me as Anya's insides were dying and draining out. When Anya's blood pressure started to drop around 10:30PM, Mom-mom told me I had to wake up. Minutes later code blue was called, and nurses and doctors rushed into the room. I stood back and cried and held onto Mommom while again they tried to resuscitate Anya, bagging her and doing chest compressions, and pushing epi. The PICU attending who was there all day and night with Anya came over to me and told me that he believes that Anya died that morning, that she is already gone and it was just her body trying to hang on. I cried more and told Mommom to go call my mom to come back to the hospital. They continued with resuscitation efforts. Mom was on her way back and Mommom continued to hug me. I looked at the clock at 11:03PM. Just a few minutes later, The PICU attending came over to me again and just shook his head. I cried, "She's gone..." and with that resuscitation efforts were stopped. My baby girl was already gone.
No mother, or no parent for that matter, should ever have to stand there feeling helpless watching their lifeless child being resuscitated. No mother should ever need be given the opportunity to hold their lifeless baby. Children are supposed to outlive their parents. That is the way to world is supposed to work. No mother should ever have to pick out an outfit for their child to be buried in. No mother should ever have to bury their dead child's body.
One by one, in silence, they unhooked the machines. Dr. Kaushal came back in, he looked so sad. He told us that he is angry that he does not know why we lost my baby girl. He asked that I authorize an autopsy, which I did. He asked that we come see him in a month, and that hopefully he would have an answer for us as to what happened and to give us some closure.
They wrapped Anya up in a blanket and handed her to me. She was noticably heavier that she was that morning, when she was alive. She still had the vent tube in her mouth, and the NG tube and the pacemaker wire in her nose. She was so swollen it didn't look like she could have opened her eyes, if she were alive. She didn't look like Anya anymore. Nevertheless, I sat there and held her and cried. I layed down with her, and cried some more. Finally, my mom was back. I could hear her in the hallway talking to Dr. K. A few minutes later she came in the room, with my Aunt Chris who had picked her up and drove her. Then I cried with my mom. They came in and had me sign some papers, authorizing autopsy, etc. and I continued to hold her. She didn't look like Anya, but she was still my baby. She was cold when they first handed her to me but after awhile my body heat warmed her a little. After midnight my mom told me that I was going to have to give her back to the nurse. I cried and said no I wasn't ready. I needed to hold her longer. I requested a lock of her hair and her handprints and footprints, so about 1AM Elizabeth came back in with stuff to do her handprints and footprints, and a nice little box to put the prints in. It was just before 1:30AM when I handed Anya back to Elizabeth, and we left for home. Mommom drove me home, and during the drive I posted on Facebook about Anya's passing. We got home and I crawled into bed, my mom gave me Tylenol PM, and I cried until I was asleep.
The next few days were a bit of a blur. I felt numb. I cried sometimes, but others I just felt numb like I was waiting for the pain to creep up inside me and take over my body but I honestly felt nothing.
On Sunday I tried to keep myself busy. I got together Anya's Christmas presents that I had already purchased, her car seat that I still had the receipt for, and a few other unopened things and took them back to Toysrus and Walmart with Mommom. Poppy was able to take the pack n play back to Walmart too. I did some laundry, and hung Anya's clothes up in her closet. I'm no where near ready to take anything out of her room yet.
On Monday we made the funeral arrangements. We went to the funeral home, to the cemetary, to the florist, and a few other places. I cried a little at the funeral home, but after that I felt numb, almost robotic. I also took her bouncy seat and swing up to the attic.
On Tuesday Anya's obituary was in the Baltimore Sun newspaper. I clipped it out and put it in her baby book. We went to Sam's Club and the grocery store and bought food for Anya's wake. After that we came home and cleaned up the living room and dining room so that we could make room for all the people we were expecting the next day.
Today was Anya's funeral service. I was so nervous walking into the funeral home. Mommom stayed right by my side. Emoree took my hand and walked with me into the room where Anya's casket was. Emoree doesn't really understand what is going on. She keeps asking where Anya is. She only knows that everyone is sad. So many people I didn't expect sent flowers. They are all beautiful. We set up pictures around Anya's casket of Anya, me with Anya, and Anya with Emoree. I am a little upset that I do not have a decent picture of Anya and I together, so I printed the one my mom took of the two of us the first day Anya was discharged from UMMC. Soooo many people came to Anya's funeral. Other heart moms, including one special woman who is still pregnant with her heart baby that I hadn't previously met other than talking to her online. I felt so loved that they came. All of my friends from work came, and many other friends that I haven't seen in months/years. My mom's friends, cousins, were there. My dad's family traveled a bit further to be there. Two of Anya's nurse practitioners were there. I felt so loved, that Anya's story has touched so many people, yet I still feel numb. At the funeral home I asked that Mommom and my cousin Laurie gave speeches. Both of which were beautiful. My Uncle Lindy and my brother Michael were the pallbearers. We followed the procession to Sacred Heart of Jesus cemetary. The drive was so slow which I expected, but it was making me antsy. We got to the cemetary, the funeral director said a verse from Psalms, and that was it. It felt so quick. I didn't want to leave, but it was cold, and Emoree was getting antsy. So we got up and went back to our cars and most everyone came back to our house for the wake. It was akward at first, I didn't know what to do and I felt like everyone was staring at me. Then we started to eat and it felt a little more relaxed. There was so many people in my house, I don't think there has ever been that many before. Every room on the main level was filled with people.
After awhile people started to dwindle out, until eventually everyone was gone. My mom asked me if I wanted to go back up to the cemetary, I said yes. I wanted to take a flower from one of the arrangements and leave it at Anya's gravesite. When we got back there, Anya was in the ground and the hole was filled with dirt, as my mom had told me it would be. I left a single white rose on the stone.
Now I kind of feel like Saturday's tragic events were longer ago than just 4 days, and that the last 8 months (since I found out about Anya's heart defect) were like a dream with a horribly tragic ending that I just woke up from, that I feel deeply sad about... I just don't know what to do, or how to feel... my baby was alive for 2 months, 7 days, 19 hours, and 40 minutes. No matter what, it wasn't nearly long enough.
The outpouring of love I have gotten from all of my friends, real life and social media, has been overwhelming but also comforting. You all are helping me through this, and I thank you.
I am uncertain if I am going to continue to blog. This blog started with my fertility journey one year ago this month, and what an up and down year it has been. Right now I feel like this is the end, but I may pick it back up later about just Emoree and I. In spring I plan to go back to school. I would like to be able to apply for the respiratory therapy program at CCBC Essex in Fall 2013. I need to have some sort of plan, something to look forward to, and going back to school is something I've wanted to do for awhile. Eventually, I'll be okay. I'll get there.
and Heart Mommas, this one is particularly for you Sarah, I still look forward to watching your little ones grow up. We still need each other <3
"These are my footprints, so perfect and so small. These tiny footprints never touched the ground at all. Not one tiny footprint, for now I have wings. These tiny footprints were meant for other things. You will hear my tiny footprints, in the patter of the rain. Gentle drops like angel’s tears, of joy and not from pain. You will see my tiny footprints, in each butterflies’ lazy dance. I’ll let you know I’m with you, if you just give me the chance. You will see my tiny footprints, in the rustle of the leaves. I will whisper names into the wind, and call each one that grieves. Most of all, these tiny footprints, are found on Mommy's heart. ‘Cause even though I’m gone now, we’ll never truly part."
I want to keep this updated, but hardly ever find the time to! We have had a lot happen in the last two weeks. I'll start with Anya was home for 10 wonderful days, then on Friday night 10/26/12 her sats dropped into the 50-60s and wouldn't come up. It was like this for over an hour, so that earned us a trip to the ER. You know how you normally sit around and wait for 4 hours in an ER before anyone even calls your name? Well, thats not the case when you take a blue baby in and state that her sats are in the 50s. If anything, that gets people moving. They put her on oxygen right away, and did an echocardiogram and a chest x-ray. Both of which turned out unchanged from before. She does have a moderate leak on her tricuspid valve in her heart, but that luckily has not worsened. She was admitted and we were right back in her old room in the IMC/PICU unit at UMMC, luckily without a roommate. She even had her same crib. They did a viral panel, and that came back clear. Turns out her hematocrit was low and she needed blood, so they tried 4x Saturday night to put an IV in unsuccessfully, then Sunday they got an IV in her head and she was able to get her blood transfusion (I think she has had like 12 of them now?). Since Hurricane Sandy was headed up the coast, Emoree stayed with Grandma & Grandaddy and I packed a bag and stayed at the hospital with Anya. Monday morning Anya was taken off of oxygen and was doing very well. We were going to stay until Tuesday to ride out the storm, but then Anya got a roommate that wasn't very pleasant so I asked if she could be discharged. So we left Monday during the hurricane, and made it home safely.
It was nice to have Anya home for Halloween! Anya had a cardiology appointment in the morning, so I took her there while Grandaddy took Emoree to school and took pictures of her during her school Halloween Parade.
After we were all home we cleaned and carved our pumpkin :)
Grandma stayed home with Anya while I took Emoree trick-or-treating with her cousins, which she was most looking forward to.
Today we did handprints and footprints, and after bath time we had a mini photoshoot!
and we finish off with Emoree practicing to write her name :)
So here is the post I've been excited to finally be able to write... Anya is home! She came home on Tuesday, October 16th about 4:30PM. She is doing fantastic! She weighed about 8lbs 2oz when she came home, and is now 8lbs 8oz just 5 days later :)
Pictures from her hospital discharge:
I was so excited to FINALLY for the first time ever be able to pick her up, unattached from all wires and tubes!
The first night home was a little rough. Anya woke up at 5AM (1.5 hours before her contiuous feed ends) and started throwing up, 4x in an hour. I stopped her feed and elevated her bassinett mattress (so she is inclined and not laying flat), and she has had perfect nights ever since! She sleeps through most of her continuous feed, which means Mommy gets about 7 hours of straight sleep :)
I could not wait to give my stinky baby a bath. At the hospital, all they could do was sponge baths so I couldn't wait to give her a real bath! Pictures from her first and second baths:
Other pics at home:
Anya gets 7 different medications daily. She gets a lovenox injection twice a day, asprin 1x/day, multivitamin 1x/day, lasix 2x/day, captopril 3x/day, reglan 3x/day, and zantac 3x/day. Luckily, her g-tube makes giving meds easy, except for the lovenox injection. That goes in her thigh.
Emoree is a proud big sister :) She tells me whenever Anya is crying, whenever Anya poops, and when her feeding pump is beeping. She is very gentle with her and always washes her hands.
and finally, both my girls in their car seats :)
On Wednesday I took Emoree to Weber's Farm while Grandma watched Anya. It was fun just Emoree and me time :)
Some people say that breast feeding or holding your baby while bottle feeding them is the best way to bond with them. With some babies, that isn't an option. Anya is fed 95% through her g-tube and we have had no problem bonding. I sometimes even feel like I am bonding better with Anya than I did with Emoree at this age.
And here are some of the "newborn" pictures I've been waiting forever to take. :)
and here is her birth announcement I am going to be mailing out to family :)