Learning Baby's Fate
After leaving our first anatomy scan our doctor requested Stetson’s ultrasounds so she could compare them to this baby’s. We also decided for now we are not going to fetal maternal medicine but would continue doing anatomy scans every four weeks with our current doctor.
As I waited for our second anatomy scan I found myself comparing Georgi’s and Stetson’s ultrasound pictures to this baby’s. Of course I don’t have the skills to understand what I’m truly looking at but I could certainly tell a massive difference in the profile. Georgi and Stetson both had such cute little button noses completely visible on the scan. Baby boy on the other hand looked as if he had no nose at all. I felt like his face was practically smooth with very minimal divots and ridges to bring out any prominent features. I truly wish I could stay positive but to be honest I felt like no matter how much I asked and prayed for a good outcome I wasn’t going to get it.
I found myself going through all the possible scenarios in my head of what chromosomal abnormalities could mean. How it would affect our baby and his relationship with Georgi and our family. The possible outcomes are endless. No chromosomal abnormalities are alike, they differ in appearance and severity, even “experts” in the field for many years admit that it’s difficult to pinpoint a precise list of symptoms and indicators of chromosomal abnormalities. What might be true for one person may not be the case for another.
For example, down syndrome, not all children with this diagnosis have heart issues, not all have hydrops fetalis in utero, they differ in cognitive abilities as well as physical abilities. How they participate in their families and society are drastically different because of the spectrum of severity is different for every person who has been diagnosed with Down syndrome. This spectrum of severity is true of every possible chromosomal abnormality diagnosis.
This wide spectrum of severity is what frightens me the most about having a child with possible chromosomal issues. I honestly will not know his capabilities and limitations until he is born and even then new information will come to light as he grows. It will be a constant cycle of new information and adaptation and I’m not certain I’m ready to take on the task. I am in awe of the saintly parents who willingly chose this challenge for themselves and family through adoption. I’m here with the possibility of this being my reality and I feel a sense of grief that is different from the grief I felt with Stetson and in some ways more challenging and it's not even a diagnosis, just a really unenthusiastic maybe.
About a week before my next scan my doctor called. Not the receptionist, not the nurse, but my doctor. I was surprised but grateful for the personable response. She wanted to inform me that she had received Stetson’s anatomy scans and compared them to baby boy. In her words ``I'm sure you're just going crazy with anxiety, I know I would be” she explained that Stetson had very obvious indicators of health problems and there were quite a number of them. However with this baby he was not showing anything similar to Stetson at this stage. Baby boy’s “red flags” are minor in comparison from what she can see on ultrasound. She hoped this news would bring some sort of comfort or relief for me.
Anatomy scan #2
2/16/2023
When we went in for our second anatomy scan I fully suspected we wouldn’t hear anything new, just more of the same uncertainties I was partly correct. The scan took much longer than expected because baby boy really had no interest in holding still. However, when we got to speak with my doctor she mentioned that baby’s head was slightly misshapen which is also a soft indicator of neural tubal defect. She said that this wasn’t new news but it was seen at the first scan. Levi and I aren’t sure why it wasn’t mentioned before, perhaps it was and we didn’t catch it or perhaps Dr. P wanted to ensure that this abnormality was truly there because the baby's position improved. Whatever the reason it was being brought to our attention now. Dr. P still did her best to prevent us from being discouraged. She said the rest of baby still looks really good and with ultrasounds there is a margin of error and technology is limited in its abilities. She gave examples of baby’s weight/growth predictions being off, baby doesn’t seem to be growing so they induce and baby is over 7lbs. Or amniotic fluid being low and they break mom’s water and it floods the room. “We all feel a bit silly when this happens.” She went on to say that I should avoid Googling things but also knows if she were me she would go home and do just that, so she tried to satisfy my curiosity by letting us know that although it’s a possible sign of a defect, the baby isn’t showing any other indicators for a diagnosis. I could tell my doctor was being as transparent as she possibly could while also trying to ensure us that nothing too frightening is being seen at this point.
After the appointment I began to really doubt the health of the baby. I know from experience it's difficult to gauge how concerned health care workers are about your health. Of course this is all for a purpose. It would be terrible going to the doctor to get screened for cancer and your doctor is showing signs of nervousness in the corner waiting for test results. They have to be the calm voice of logic, data, and reason in difficult situations.
I was still confident that baby more than likely doesn’t have galactosialidosis but felt like something wasn’t right. As we waited for our third anatomy screening I became very frustrated and angry. I didn’t want to be pregnant and I felt incapable of bonding with the baby I was growing. I was just upset that after all we have been through with Stetson I could have a medically complex child that lives and that dynamic would be so challenging and incredibly different than what we went through with Stetson. I thought about how the one thing that gave me peace about Stetson’s passing was I specifically asked God to not have Stetson be a vegetable, being so medically complex and disabled that he is a prisoner in his body. I didn’t want that for Stetson and I worry that this may be the reality of this baby and it made me so angry. Mad at the situation, disappointed at the possible outcome.
I began to wonder what life would be like for our family with a medically complex child. How Georgi’s life would be impacted. How different our lives would be. I felt hopelessness and anger. I just so desperately wanted a healthy baby.
I felt distant and began to loath my pregnancy even more than I previously had. My anger and my disappointment were encased with feelings of guilt. I felt horrible, how could I feel this way. How could I possibly be a caring loving mother to this baby if I all I was feeling was disappointment and anger?
I wish I could have just focused on the confidence of the doctor that truly everything may be okay. But I just felt like a walking kinder egg waiting to pop open to see what I was holding inside. I was given the possibility that everything would be fine or the baby having pretty serious health conditions, nothing in between.
Sunday
2/26/2023
Sunday’s are often difficult for me because I struggle hearing all about “good things to come” or peoples stories of overcoming adversity. I feel like my grief will never be relieved in this life. I’ll always feel broken, never whole again. How can I? How can I move forward feeling like I’ve become fulfilled or improved when my baby lies in the ground and the one I’m growing has an uncertain future?
The Lesson in Relief Society was on a General Conference talk “Are You Still Willing” by Elder Kevin W. Pearson of the Seventy. During class I couldn’t stop thinking about Stetson and what we went through with him. I felt anxious and upset and spent the majority of the class quietly crying in my seat. I couldn’t shake the feeling that God will take all my children away from me. I texted Levi and said “I feel a lack of trust and right now I don’t feel very willing to follow Him (God) in all things. –I don’t want to turn away but I don’t want to go to Him I just kinda want to stand still.”
As I waited for Levi’s reply a woman spoke about how after all her mother went through in life, the difficult times, she believes that she would choose to do it all again for the sake of the person she is now and the things she has been able to teach her children. I reflected on her comment and felt like for myself I wouldn’t choose to go through what I did with Stetson, I wouldn’t do it all again. I don’t like the person I am now, broken and overwhelmed. I thought about the saying “Better to have loved and lost than to not love at all.” I don’t know if that’s true. I often think had I never experienced this heartache my life would be better, I’d be a better person. I struggle believing the loss of my son is for “Thy good” what does that say about me. That I’m so terribly distant from God the only way for correction is for God to reprimand me by taking one of my children and possibly others.
Levi’s Reply came through
"I think/feel we have been turning away and or just standing still, causing us to slip. I think we need to seek to turn back unto God and Christ. I feel that we could strengthen our faith and hope through just starting with the small simple things. We should really pray together more often, just me and you. Read our scriptures together. I know it’s gonna be hard and tough and we will potentially have feelings of guilt or hardship and possibly anger but I think as we humble ourselves we may find that the spirit enters our lives again and hope and peace will come. I think we have become superficial, at least I know I have."
I responded, “Ya you’re right”
Levi texted, “I want to be better. Do you want to embark on becoming better together with me?”
Initially I wanted to say no but agreed. Levi sent over a couple of quotes from the talk we were discussing. Bringing our conversation to an end.
"Mortality, by divine design, is not easy and at times can be overwhelming. However, “[we] are, that [we] might have joy”! Focusing on the Savior and our covenants brings lasting joy! The purpose of mortality is to prove our willingness. “The great task of life [and the cost of discipleship] is to learn the will of the Lord and then to do it.” True discipleship leads to a fullness of joy. Are we willing to pay the price of discipleship?"
"Our determination to center our lives on Christ, therefore, must be consistent—not conditional, situational, or superficial. We cannot afford to take vacation days or personal time off from our willingness to “stand as witnesses of God at all times and in all things, and in all places.” Discipleship is not cheap, because the companionship of the Holy Ghost is priceless."
Anatomy Scan #3
Our third anatomy scan finally came. I told Georgi that this time I would request photos of baby since she had been asking. I lay down on the table and this time the tech turned the screen so I could see a little better. Levi and I asked questions this time around, knowing the techs share more of what they are seeing when they know we as patients are aware of the circumstances surrounding our baby’s health.
This time baby cooperated so we could see his head better. We could see clearly the misshapenness, clear divots dimpled baby’s temple on either side of his head. It was discouraging to see and Levi’s demeanor changed a little somber after we could recognize these abnormalities without the tech or a doctor pointing them out.
After the ultrasound we once again made our way to Dr. P’s office to talk about what was being seen on the ultrasound. The nurse mentioned she was with the radiologist and it would be a little bit of a wait. Levi and I both got concerned to hear this as Dr.P typically visits with the radiologist after our appointment and calls us if he notices anything that she didn’t. However, we both kept this concern to ourselves.
While we waited I told Levi how I was feeling about what someone had said in Sunday school that bothered me, the comment made was that trials and sufferings happen due to sin. While this may in fact be the case in some scenarios (after all there are consequences to our actions), I absolutely reject this concept as a reason for all suffering. I had been reflecting on a clip from a devotional given by Jeffery R Holland (watch here). I voiced to Levi that I its silly to think that suffering and trials are simply a consequence to sin (even though we all do sin) I sincerely doubt that the best of us the Prophets and Apostles who suffered immensely (and there families) was do to sinfulness when there lives were taken in the service to God. Of course I have a long way to go but I just was trying to remind myself that God’s best suffered far greater than I in many ways. Knowing this still doesn’t make the loss of Stetson easier to endure, I’m not in less pain or less angry. However, I just know that this life is never free of suffering or trials. I just wish ours was different.
Dr.P after several minutes came into the room and immediately said “I’m sorry you guys I’m sure you saw it on the screen.” I started to say “Oh no worries.” But I stopped myself as I realized she wasn’t apologizing for her tardiness and said, “wait what do you mean?” With a sigh she said that the baby has fluid in his abdomen. Levi and I were in shock, I don’t think we said much. She went on to say, “It’s not a lot but it’s obvious”. She asked if we wanted to see the images and we agreed. She pointed out baby’s abdomen and the dark shadows on both sides of his belly. It didn’t look significant but it was clear there was fluid where fluid shouldn’t be.
Dr. P was incredibly apologetic as she explained that with our history the likelihood of this baby not having Galactosialidosis is incredibly slim. She told us that she wants us to meet with the neonatologist at the hospital and talk about how we want to move forward and plan for baby’s care. She also said that now I had to be seen weekly to closely monitor my health and watch for mirror syndrome (especially because I had developed it with Stetson).
The rest of our appointment was talking about how my care could change, whether or not I wanted to go to Maternal Fetal Medicine and see the specialist. She talked about closely monitoring the baby so I could continue with the plan for a VBAC (vaginal birth after c-section) delivery. She said that with a second c-section a VBAC delivery wouldn’t be plausible and she wants to help me achieve that goal for when we plan to have more children. I interrupted her at that moment and told her that we were planning on Levi getting a vasectomy after this baby, she responded with “oh that makes me sad” knowing full well that Levi and I want and ache to grow our family. She then went on to say that she would help us in any way she can to help us with IVF when the time was right and when we were ready to pursue that journey.
Before we left Dr P. said she would get in contact with the neonatologist at the hospital and have us meet with him later that day. We appreciated Dr. P thoroughness and eagerness to get us the support we needed and would need. Before she left us she once again expressed her sympathies.
Once alone Levi and I just looked at each other and crumbled as I said, “I can’t believe it, I can’t believe this is happening again.” I felt so defeated, there was no sign of Hydrops until now and I felt like I had been deceived. Once again I’m in this world of losing a baby, talking and planning with doctors for end of life care, no need to set up a nursery, no need to have a baby shower, anything I would need for a baby I no longer have use for.
Levi and I sat in the car for a while in surprise. I felt like I had given a little bit of faith to God when we exercised a “not protecting not trying” state of limbo. Now I just felt guilty and naive to think that God would protect our children. I expressed to Levi that I prayed that if this baby were sick I would just miscarry, I can’t go through it again, burying a child, seeing them for a small moment and then placing them in the ground. I begged God to please let me raise the rest of my children on this earth, not just for a small amount of time but to actually witness them growing up and building their own families. How silly I was to think that I could ask for such protections. I felt so guilty for the lack of bonding I lost during those four weeks between ultrasounds. The anger and despair I felt towards my pregnant self during that time. I regretted ever feeling that way.
Driving home I said, “What are we going to tell Georgi? She is going to be so crushed.” Levi suggested we wait, plan a time and the right words to tell her. When we picked her up I couldn’t stop myself from crying. She looked at me and put her hands on either side of my face and gave me a kiss and smiled and said, “I love you mommy.” I couldn’t speak, just cried and Georgi asked, “Why is mommy crying?” Levi replied, “Mommy just loves you so much.”
When we got home we sat Georgi on the couch. I couldn’t compose myself and knew that we needed to tell Georgi right away especially because she kept asking. She was eating a fruit snack and I spoke first “Georgi, mommy and daddy went to the doctor today to check on baby brother and it turns out he is sick like Stetson was sick.” Georgi didn’t react, just kept shoving fruit snacks in her mouth without taking a breather. She nodded and made agreeable sounds but not words. We weren’t sure she truly understood. Levi spoke next “Georgi, baby brother is only going to stay with us for a short while and then he’s going to live with Stetson and Jesus. Do you understand sweetheart?” Georgi nodded but just continued to eat her fruit snacks.
Levi and I looked at each other and knew she wasn’t understanding but didn’t know what else to do. We decided to inform our families before we went to meet with the neonatologist later that day. We decided to do so separately. Levi informed his family individually while I decided to inform my Dad to spread the news with other family members and to not contact me at least for the day.
I did however inform my sister because she had to come watch Georgi so we could leave for our appointment. All I remember saying was “I’m just trying to give Georgi a sibling and I can’t even do that.”
Levi and I walked the hospital hallways to meet the neonatologist Dr. H. It felt agonizingly familiar. We were directed to the NICU first where Dr. H first greeted us and then we were directed to a small room down the hall from the NICU entrance.
Dr. H met us in the room with a box of tissues under his arm and two water bottles that he placed right in front of us. He first expressed his sympathies and although he was pleased to meet us the circumstances were far less than desirable. He then went on to say that he has seen the scan of Baby Boy and that it does appear in all likelihood that this baby would be diagnosed with galactosialidosis. He continued, by telling us to start thinking about how we want to plan and prepare for baby’s care, whatever we feel is best and what our desires and goals are.
Galactosialidosis has no cure and is a life limiting disease meaning that depending on how aggressive we treat baby at the end of the day we will more than likely have less than a year with him. Dr. H frequently mentioned that they will do whatever our wishes are while also mentioning that a lot of care done in the NICU is painful but its done in hopes that baby will improve and eventually get to go home. He frequently mentioned the phrase “dying with dignity”.
Levi and I voiced that we would not have put Stetson through so much intervention had we known his diagnosis long before. We voiced that although we need to discuss it further, we tend to agree to not put baby through unnecessary procedures and stress.
As we discussed Dr. H mentioned the possibility of doing an amniocentesis to rule out the slim possibility of immune hydrops such as anima or RH incompatibility. However, we called Dr. P to voice the possibility of an amniocentesis to check for this type of issue. Dr. P expressed that an amniocentesis for this purpose would likely be an unnecessary intervention as I have already been screened for these specific concerns.
Dr. H again reiterated that we need to plan for baby’s care and it would be best for us to discuss this further with him and a case manager and asked if we could meet tomorrow to put together a tentative plan. We agreed and set an appointment for Monday as it was the weekend.
When Levi and I got in the car I felt annoyed by the fact that all the doctors are making the assumption that this baby indeed has galactosialidosis. However I totally understand why that is the default diagnosis and knew if I were in their position I would be drawing the same conclusions.
We already have a confirmed diagnosis of galactosialidosis with Stetson. Based on our own genetics we have a 25% chance that our current and future pregnancies will have galactosialidosis. Based on our NIPs screening we have a very low estimated risk of any other chromosomal abnormalities. Stetson presented in a similar pattern as baby boy just at an earlier onset. All logic points to the conclusion that this baby is just as sick as Stetson and now we are faced with all the same decisions that we did two years ago.
The weekend was incredibly difficult for us. I especially felt disconnected from everything. I was angry and sad and spent much of my time crying and hating the decision Levi and I had made approximately 28wks ago. I kept telling myself that there is no way this was happening again. We took a leap of faith and gave my little mustard seed of faith and trust that if pregnancy were to happen our baby would be protected. I was approximately two weeks too late when we decided IVF would have been the better path to take. I prayed that we would be protected from having to lay another baby in the ground. I couldn’t be in this place again!
I reflected on how I told people I didn’t want a baby shower, how I would go to the store and see the perfect little baby outfits and be close to purchasing them but stopped myself thinking “I better wait, just in case”. How I have a car seat that is a year away from expiration and now I don’t even get to use it. A car seat that I saved for Stetson and then this baby, I saved a car seat for two different babies, I saved the car seat but no one could save my babies. I hated how I was feeling. I hated my situation and even through all my crying and anger and frustration I still kept telling myself this couldn’t be true.
March 20th, 2023
After the appointment I began to really doubt the health of the baby. I know from experience it's difficult to gauge how concerned health care workers are about your health. Of course this is all for a purpose. It would be terrible going to the doctor to get screened for cancer and your doctor is showing signs of nervousness in the corner waiting for test results. They have to be the calm voice of logic, data, and reason in difficult situations.
I was still confident that baby more than likely doesn’t have galactosialidosis but felt like something wasn’t right. As we waited for our third anatomy screening I became very frustrated and angry. I didn’t want to be pregnant and I felt incapable of bonding with the baby I was growing. I was just upset that after all we have been through with Stetson I could have a medically complex child that lives and that dynamic would be so challenging and incredibly different than what we went through with Stetson. I thought about how the one thing that gave me peace about Stetson’s passing was I specifically asked God to not have Stetson be a vegetable, being so medically complex and disabled that he is a prisoner in his body. I didn’t want that for Stetson and I worry that this may be the reality of this baby and it made me so angry. Mad at the situation, disappointed at the possible outcome.
I began to wonder what life would be like for our family with a medically complex child. How Georgi’s life would be impacted. How different our lives would be. I felt hopelessness and anger. I just so desperately wanted a healthy baby.
I felt distant and began to loath my pregnancy even more than I previously had. My anger and my disappointment were encased with feelings of guilt. I felt horrible, how could I feel this way. How could I possibly be a caring loving mother to this baby if I all I was feeling was disappointment and anger?
I wish I could have just focused on the confidence of the doctor that truly everything may be okay. But I just felt like a walking kinder egg waiting to pop open to see what I was holding inside. I was given the possibility that everything would be fine or the baby having pretty serious health conditions, nothing in between.
Sunday
2/26/2023
Sunday’s are often difficult for me because I struggle hearing all about “good things to come” or peoples stories of overcoming adversity. I feel like my grief will never be relieved in this life. I’ll always feel broken, never whole again. How can I? How can I move forward feeling like I’ve become fulfilled or improved when my baby lies in the ground and the one I’m growing has an uncertain future?
The Lesson in Relief Society was on a General Conference talk “Are You Still Willing” by Elder Kevin W. Pearson of the Seventy. During class I couldn’t stop thinking about Stetson and what we went through with him. I felt anxious and upset and spent the majority of the class quietly crying in my seat. I couldn’t shake the feeling that God will take all my children away from me. I texted Levi and said “I feel a lack of trust and right now I don’t feel very willing to follow Him (God) in all things. –I don’t want to turn away but I don’t want to go to Him I just kinda want to stand still.”
As I waited for Levi’s reply a woman spoke about how after all her mother went through in life, the difficult times, she believes that she would choose to do it all again for the sake of the person she is now and the things she has been able to teach her children. I reflected on her comment and felt like for myself I wouldn’t choose to go through what I did with Stetson, I wouldn’t do it all again. I don’t like the person I am now, broken and overwhelmed. I thought about the saying “Better to have loved and lost than to not love at all.” I don’t know if that’s true. I often think had I never experienced this heartache my life would be better, I’d be a better person. I struggle believing the loss of my son is for “Thy good” what does that say about me. That I’m so terribly distant from God the only way for correction is for God to reprimand me by taking one of my children and possibly others.
Levi’s Reply came through
"I think/feel we have been turning away and or just standing still, causing us to slip. I think we need to seek to turn back unto God and Christ. I feel that we could strengthen our faith and hope through just starting with the small simple things. We should really pray together more often, just me and you. Read our scriptures together. I know it’s gonna be hard and tough and we will potentially have feelings of guilt or hardship and possibly anger but I think as we humble ourselves we may find that the spirit enters our lives again and hope and peace will come. I think we have become superficial, at least I know I have."
I responded, “Ya you’re right”
Levi texted, “I want to be better. Do you want to embark on becoming better together with me?”
Initially I wanted to say no but agreed. Levi sent over a couple of quotes from the talk we were discussing. Bringing our conversation to an end.
"Mortality, by divine design, is not easy and at times can be overwhelming. However, “[we] are, that [we] might have joy”! Focusing on the Savior and our covenants brings lasting joy! The purpose of mortality is to prove our willingness. “The great task of life [and the cost of discipleship] is to learn the will of the Lord and then to do it.” True discipleship leads to a fullness of joy. Are we willing to pay the price of discipleship?"
"Our determination to center our lives on Christ, therefore, must be consistent—not conditional, situational, or superficial. We cannot afford to take vacation days or personal time off from our willingness to “stand as witnesses of God at all times and in all things, and in all places.” Discipleship is not cheap, because the companionship of the Holy Ghost is priceless."
Anatomy Scan #3
3/17/2023
Our third anatomy scan finally came. I told Georgi that this time I would request photos of baby since she had been asking. I lay down on the table and this time the tech turned the screen so I could see a little better. Levi and I asked questions this time around, knowing the techs share more of what they are seeing when they know we as patients are aware of the circumstances surrounding our baby’s health.
This time baby cooperated so we could see his head better. We could see clearly the misshapenness, clear divots dimpled baby’s temple on either side of his head. It was discouraging to see and Levi’s demeanor changed a little somber after we could recognize these abnormalities without the tech or a doctor pointing them out.
After the ultrasound we once again made our way to Dr. P’s office to talk about what was being seen on the ultrasound. The nurse mentioned she was with the radiologist and it would be a little bit of a wait. Levi and I both got concerned to hear this as Dr.P typically visits with the radiologist after our appointment and calls us if he notices anything that she didn’t. However, we both kept this concern to ourselves.
While we waited I told Levi how I was feeling about what someone had said in Sunday school that bothered me, the comment made was that trials and sufferings happen due to sin. While this may in fact be the case in some scenarios (after all there are consequences to our actions), I absolutely reject this concept as a reason for all suffering. I had been reflecting on a clip from a devotional given by Jeffery R Holland (watch here). I voiced to Levi that I its silly to think that suffering and trials are simply a consequence to sin (even though we all do sin) I sincerely doubt that the best of us the Prophets and Apostles who suffered immensely (and there families) was do to sinfulness when there lives were taken in the service to God. Of course I have a long way to go but I just was trying to remind myself that God’s best suffered far greater than I in many ways. Knowing this still doesn’t make the loss of Stetson easier to endure, I’m not in less pain or less angry. However, I just know that this life is never free of suffering or trials. I just wish ours was different.
Dr.P after several minutes came into the room and immediately said “I’m sorry you guys I’m sure you saw it on the screen.” I started to say “Oh no worries.” But I stopped myself as I realized she wasn’t apologizing for her tardiness and said, “wait what do you mean?” With a sigh she said that the baby has fluid in his abdomen. Levi and I were in shock, I don’t think we said much. She went on to say, “It’s not a lot but it’s obvious”. She asked if we wanted to see the images and we agreed. She pointed out baby’s abdomen and the dark shadows on both sides of his belly. It didn’t look significant but it was clear there was fluid where fluid shouldn’t be.
Dr. P was incredibly apologetic as she explained that with our history the likelihood of this baby not having Galactosialidosis is incredibly slim. She told us that she wants us to meet with the neonatologist at the hospital and talk about how we want to move forward and plan for baby’s care. She also said that now I had to be seen weekly to closely monitor my health and watch for mirror syndrome (especially because I had developed it with Stetson).
The rest of our appointment was talking about how my care could change, whether or not I wanted to go to Maternal Fetal Medicine and see the specialist. She talked about closely monitoring the baby so I could continue with the plan for a VBAC (vaginal birth after c-section) delivery. She said that with a second c-section a VBAC delivery wouldn’t be plausible and she wants to help me achieve that goal for when we plan to have more children. I interrupted her at that moment and told her that we were planning on Levi getting a vasectomy after this baby, she responded with “oh that makes me sad” knowing full well that Levi and I want and ache to grow our family. She then went on to say that she would help us in any way she can to help us with IVF when the time was right and when we were ready to pursue that journey.
Before we left Dr P. said she would get in contact with the neonatologist at the hospital and have us meet with him later that day. We appreciated Dr. P thoroughness and eagerness to get us the support we needed and would need. Before she left us she once again expressed her sympathies.
Once alone Levi and I just looked at each other and crumbled as I said, “I can’t believe it, I can’t believe this is happening again.” I felt so defeated, there was no sign of Hydrops until now and I felt like I had been deceived. Once again I’m in this world of losing a baby, talking and planning with doctors for end of life care, no need to set up a nursery, no need to have a baby shower, anything I would need for a baby I no longer have use for.
Levi and I sat in the car for a while in surprise. I felt like I had given a little bit of faith to God when we exercised a “not protecting not trying” state of limbo. Now I just felt guilty and naive to think that God would protect our children. I expressed to Levi that I prayed that if this baby were sick I would just miscarry, I can’t go through it again, burying a child, seeing them for a small moment and then placing them in the ground. I begged God to please let me raise the rest of my children on this earth, not just for a small amount of time but to actually witness them growing up and building their own families. How silly I was to think that I could ask for such protections. I felt so guilty for the lack of bonding I lost during those four weeks between ultrasounds. The anger and despair I felt towards my pregnant self during that time. I regretted ever feeling that way.
Driving home I said, “What are we going to tell Georgi? She is going to be so crushed.” Levi suggested we wait, plan a time and the right words to tell her. When we picked her up I couldn’t stop myself from crying. She looked at me and put her hands on either side of my face and gave me a kiss and smiled and said, “I love you mommy.” I couldn’t speak, just cried and Georgi asked, “Why is mommy crying?” Levi replied, “Mommy just loves you so much.”
When we got home we sat Georgi on the couch. I couldn’t compose myself and knew that we needed to tell Georgi right away especially because she kept asking. She was eating a fruit snack and I spoke first “Georgi, mommy and daddy went to the doctor today to check on baby brother and it turns out he is sick like Stetson was sick.” Georgi didn’t react, just kept shoving fruit snacks in her mouth without taking a breather. She nodded and made agreeable sounds but not words. We weren’t sure she truly understood. Levi spoke next “Georgi, baby brother is only going to stay with us for a short while and then he’s going to live with Stetson and Jesus. Do you understand sweetheart?” Georgi nodded but just continued to eat her fruit snacks.
Levi and I looked at each other and knew she wasn’t understanding but didn’t know what else to do. We decided to inform our families before we went to meet with the neonatologist later that day. We decided to do so separately. Levi informed his family individually while I decided to inform my Dad to spread the news with other family members and to not contact me at least for the day.
I did however inform my sister because she had to come watch Georgi so we could leave for our appointment. All I remember saying was “I’m just trying to give Georgi a sibling and I can’t even do that.”
Levi and I walked the hospital hallways to meet the neonatologist Dr. H. It felt agonizingly familiar. We were directed to the NICU first where Dr. H first greeted us and then we were directed to a small room down the hall from the NICU entrance.
Dr. H met us in the room with a box of tissues under his arm and two water bottles that he placed right in front of us. He first expressed his sympathies and although he was pleased to meet us the circumstances were far less than desirable. He then went on to say that he has seen the scan of Baby Boy and that it does appear in all likelihood that this baby would be diagnosed with galactosialidosis. He continued, by telling us to start thinking about how we want to plan and prepare for baby’s care, whatever we feel is best and what our desires and goals are.
Galactosialidosis has no cure and is a life limiting disease meaning that depending on how aggressive we treat baby at the end of the day we will more than likely have less than a year with him. Dr. H frequently mentioned that they will do whatever our wishes are while also mentioning that a lot of care done in the NICU is painful but its done in hopes that baby will improve and eventually get to go home. He frequently mentioned the phrase “dying with dignity”.
Levi and I voiced that we would not have put Stetson through so much intervention had we known his diagnosis long before. We voiced that although we need to discuss it further, we tend to agree to not put baby through unnecessary procedures and stress.
As we discussed Dr. H mentioned the possibility of doing an amniocentesis to rule out the slim possibility of immune hydrops such as anima or RH incompatibility. However, we called Dr. P to voice the possibility of an amniocentesis to check for this type of issue. Dr. P expressed that an amniocentesis for this purpose would likely be an unnecessary intervention as I have already been screened for these specific concerns.
Dr. H again reiterated that we need to plan for baby’s care and it would be best for us to discuss this further with him and a case manager and asked if we could meet tomorrow to put together a tentative plan. We agreed and set an appointment for Monday as it was the weekend.
When Levi and I got in the car I felt annoyed by the fact that all the doctors are making the assumption that this baby indeed has galactosialidosis. However I totally understand why that is the default diagnosis and knew if I were in their position I would be drawing the same conclusions.
We already have a confirmed diagnosis of galactosialidosis with Stetson. Based on our own genetics we have a 25% chance that our current and future pregnancies will have galactosialidosis. Based on our NIPs screening we have a very low estimated risk of any other chromosomal abnormalities. Stetson presented in a similar pattern as baby boy just at an earlier onset. All logic points to the conclusion that this baby is just as sick as Stetson and now we are faced with all the same decisions that we did two years ago.
The weekend was incredibly difficult for us. I especially felt disconnected from everything. I was angry and sad and spent much of my time crying and hating the decision Levi and I had made approximately 28wks ago. I kept telling myself that there is no way this was happening again. We took a leap of faith and gave my little mustard seed of faith and trust that if pregnancy were to happen our baby would be protected. I was approximately two weeks too late when we decided IVF would have been the better path to take. I prayed that we would be protected from having to lay another baby in the ground. I couldn’t be in this place again!
I reflected on how I told people I didn’t want a baby shower, how I would go to the store and see the perfect little baby outfits and be close to purchasing them but stopped myself thinking “I better wait, just in case”. How I have a car seat that is a year away from expiration and now I don’t even get to use it. A car seat that I saved for Stetson and then this baby, I saved a car seat for two different babies, I saved the car seat but no one could save my babies. I hated how I was feeling. I hated my situation and even through all my crying and anger and frustration I still kept telling myself this couldn’t be true.
March 20th, 2023
Meeting with Care Team
Our meeting with the neonatologist and case manager finally came. Levi couldn’t come due to work but asked that I call him to be a listening ear. Again I was directed to a room with four professionals, Dr. H neonatologist, Courtney, a case manager, Tiana Hospice/Home health consultant, and the charge nurse of the NICU.
Again an unwelcoming feeling of déjà vu crept into my body as I sat down to discuss end of life care for my baby that hasn’t even been born yet. I got Levi on the phone and the team introduced themselves to us. As we talked I felt like I struggled making eye contact with anyone. I kept my head down and wrote notes of what was being discussed while Levi asked the majority of the questions. Discussion was mainly about deciding to do home care vs. hospice care and to do genetic testing on baby’s cord blood to get a confirmed diagnosis.
Levi chimed in and said that over the weekend we had discussed an amniocentesis even though we understand why the assumption is baby boy has galactosialidosis. We just felt like we can’t make any care decisions without knowing for sure. We completely understood that in all likelihood this baby has galactosialidosis but we would feel a lot of regret if we didn’t check for sure. Genetic testing of cord blood seems like a mute point sense it takes 10-14 days to gain results and by that time baby likely would pass and there would be no ability to change care.
The team said they completely understood our want for an amniocentesis and Dr. H walked to the end of the room to call Dr. P to get it set up before she left for vacation.
We ended the meaning with the understanding that as soon as we got the results of the amniocentesis we could move forward with goal setting and care planning for baby boy.
After our meeting I had an appointment with Dr. P, which involved an ultrasound and a blood pressure check. The ultrasound didn’t show any increase of fluid from the previous week and my blood pressure was good so our concerns remained stable. We also explained to Dr. P why we wanted the amniocentesis as more of a procedure to give us our peace of mind, we could eliminate any room for doubt. Dr. P completely understood our desire and supported us in our decision. She informed us that we would need to go to a Maternal Fetal Medicine doctor instead of her simply because this specific amniocentesis is more involved than the amino. Procedures she typically performs. However, she said that we did not have to continue with MFM doctors for our regular appointments if we didn’t want to. We said we were comfortable going to MFM solely for this procedure but would like to continue our care with Dr. P. She would send out the referral right away so we could be seen as soon as possible.
The day before our appointment Levi asked me “will you do something for me? Will you allow Bryce (bro-in law) and DeLynn (Bryce’s father) to give us priesthood blessings before our appointment?” I agreed and informed him that I thought it was a good idea.
I don’t remember much of what was said in either of our blessings but I do recall one sentence “if there is a miracle to be had, allow others to witness it”. I don’t know what it means or how I even feel about it but I do know that I felt better after the blessing even though I was incredibly nervous about the procedure.
When the office called us back I laid on the table and felt my heart racing. I felt uncomfortable and found myself wanting to call out. The first part of the procedure is an incredibly scrupulous ultrasound that took approximately an hour. During the ultrasound Levi and I could visibly notice the swelling around baby. As I watched the screen we could more clearly see baby boy’s misshapen head, his teeny tiny nose, and obvious swelling in the belly and scrotum. I couldn’t help but feel uneasy about the procedure that would take place once the doctor would come in and if I was making a mistake. Even without confirmation from the doctor it was clear that baby boy was exhibiting very similar signs as Stetson.
After the ultrasound tech left the room, Levi and I sat side by side. I told him that I was feeling uneasy and that maybe we were making a mistake. He said he was feeling the same way. Before we could discuss it further the MFM doctor stepped in, Dr.S. She revealed to us that she had gone through the medical records of our last baby from the University of Utah hospital and she can confidently say that this baby does have Hydrops in the abdomen, scrotum and under the skin (all the same regions as Stetson) She also went on to say that the possibility of it being anything other than galactosialidosis was slim but that she would continue with the procedure if we desired.
I voiced to her that originally we had wanted the amniocentesis to remove any doubt that this baby could have something else that perhaps our plans for care would change. However, after seeing the ultrasound having the hydrops diagnosis confirmed we have begun to feel uneasy about the amniocentesis. I explained I was really concerned about putting baby in stress and going into labor.
Dr.S explained in detail about the procedure along with the risk, which included spontaneous abortion, infection, water breaking, fetal stress, and more that I’m sure I have forgotten. Although these risks are extremely low. She then went on to say that the amniocentesis would take approximately two weeks for results.
We asked if we could have the room to discuss our decision further and she was happy to oblige. Levi and I discussed further how the odds of us winning another medical lottery is incredibly slim and that the reality is the baby has a very low chance of survival with hydrops regardless of the cause. We had to ask ourselves if we walked away would we regret it? Would we wonder if we made the right decision? We decided to say a prayer together and we prayed that we would feel confident with the decisions whatever we chose, that we would be guided to the right one. After we prayed and discussed further Levi and I decided to no longer move forward with the amniocentesis. We called Dr. S back in the room and informed her of our decision. She supported us in it and said that we could change our minds at any time.
Levi and I left feeling confident in our decision to not move forward with the amniocentesis. That however long baby decided to stay with us would be up to him. We felt comfortable with the decision but heartbroken that we are accepting the reality that this baby truly does have galactosialidosis and we once again find ourselves in the difficult position of planning a funeral for our unborn child.
There are days where I still don’t believe this is my reality. Preparing for the death of another child is an impossible task. I can prepare for all the logistics but the emotional toll is something I find myself ignoring. I’m constantly in denial, I told Levi that logically I know this baby is sick, I logically know he is going to die, but there is a part of me that says it's not true that this isn’t really happening to me. Almost like I’m in the audience of a really horrible film and I’m hoping for the happy ending even though I know it's not going to happen, I still hope for it.
There are days where I’m in so much denial that it doesn't even phase me as I’m making lists that are associated with end of life care. Other times I’m so incredibly overwhelmed and angry at my situation that taking a shower is difficult. It’s rare that I emotionally feel balanced in this process, I feel nothing or I feel everything, one extreme to the next.
I’m becoming greatly overwhelmed with the planning of everything and the timing of it all. In a matter of days we are reminded of our son Stetson and the difficult short life he lived as we reflect on the anniversary of his coming home. While simultaneously receiving news that our baby boy will be joining him in heaven being crippled by the same disease that took his older brother. Georgi once again being excited to be a big sister again is no longer going to have that earthly experience. She once again is going through feelings of confusion and pain that her little 4yr old mind can barely sort out.
Again I find myself worried about the days to come. Stressed about having baby boy staying in utero risking death before birth or being born and living only hours. I’m completely in awe that again we are facing the reality of losing another child. My fear that God is going to take all my children from me is becoming dangerously closer to reality than misplaced anxiety.
I don’t know how long baby boy will live, what things we will be able to do with him, if I’ll be able to nurse him, if he’ll be able to come home, if we will have the opportunity to bless him. I don’t know what power prayer truly holds but I do know there is nothing anyone can do but pray. Levi and I are forever grateful for those who pray for us. For this purpose we decided to give baby boy a name BuckLynn Beckett Barker. Those who wish to pray for BuckLynn and us know that we do appreciate the sentiment.
Again an unwelcoming feeling of déjà vu crept into my body as I sat down to discuss end of life care for my baby that hasn’t even been born yet. I got Levi on the phone and the team introduced themselves to us. As we talked I felt like I struggled making eye contact with anyone. I kept my head down and wrote notes of what was being discussed while Levi asked the majority of the questions. Discussion was mainly about deciding to do home care vs. hospice care and to do genetic testing on baby’s cord blood to get a confirmed diagnosis.
Levi chimed in and said that over the weekend we had discussed an amniocentesis even though we understand why the assumption is baby boy has galactosialidosis. We just felt like we can’t make any care decisions without knowing for sure. We completely understood that in all likelihood this baby has galactosialidosis but we would feel a lot of regret if we didn’t check for sure. Genetic testing of cord blood seems like a mute point sense it takes 10-14 days to gain results and by that time baby likely would pass and there would be no ability to change care.
The team said they completely understood our want for an amniocentesis and Dr. H walked to the end of the room to call Dr. P to get it set up before she left for vacation.
We ended the meaning with the understanding that as soon as we got the results of the amniocentesis we could move forward with goal setting and care planning for baby boy.
After our meeting I had an appointment with Dr. P, which involved an ultrasound and a blood pressure check. The ultrasound didn’t show any increase of fluid from the previous week and my blood pressure was good so our concerns remained stable. We also explained to Dr. P why we wanted the amniocentesis as more of a procedure to give us our peace of mind, we could eliminate any room for doubt. Dr. P completely understood our desire and supported us in our decision. She informed us that we would need to go to a Maternal Fetal Medicine doctor instead of her simply because this specific amniocentesis is more involved than the amino. Procedures she typically performs. However, she said that we did not have to continue with MFM doctors for our regular appointments if we didn’t want to. We said we were comfortable going to MFM solely for this procedure but would like to continue our care with Dr. P. She would send out the referral right away so we could be seen as soon as possible.
March 22, 2023
Amniocentesis with Maternal Fetal Medicine
The day before our appointment Levi asked me “will you do something for me? Will you allow Bryce (bro-in law) and DeLynn (Bryce’s father) to give us priesthood blessings before our appointment?” I agreed and informed him that I thought it was a good idea.
I don’t remember much of what was said in either of our blessings but I do recall one sentence “if there is a miracle to be had, allow others to witness it”. I don’t know what it means or how I even feel about it but I do know that I felt better after the blessing even though I was incredibly nervous about the procedure.
When the office called us back I laid on the table and felt my heart racing. I felt uncomfortable and found myself wanting to call out. The first part of the procedure is an incredibly scrupulous ultrasound that took approximately an hour. During the ultrasound Levi and I could visibly notice the swelling around baby. As I watched the screen we could more clearly see baby boy’s misshapen head, his teeny tiny nose, and obvious swelling in the belly and scrotum. I couldn’t help but feel uneasy about the procedure that would take place once the doctor would come in and if I was making a mistake. Even without confirmation from the doctor it was clear that baby boy was exhibiting very similar signs as Stetson.
After the ultrasound tech left the room, Levi and I sat side by side. I told him that I was feeling uneasy and that maybe we were making a mistake. He said he was feeling the same way. Before we could discuss it further the MFM doctor stepped in, Dr.S. She revealed to us that she had gone through the medical records of our last baby from the University of Utah hospital and she can confidently say that this baby does have Hydrops in the abdomen, scrotum and under the skin (all the same regions as Stetson) She also went on to say that the possibility of it being anything other than galactosialidosis was slim but that she would continue with the procedure if we desired.
I voiced to her that originally we had wanted the amniocentesis to remove any doubt that this baby could have something else that perhaps our plans for care would change. However, after seeing the ultrasound having the hydrops diagnosis confirmed we have begun to feel uneasy about the amniocentesis. I explained I was really concerned about putting baby in stress and going into labor.
Dr.S explained in detail about the procedure along with the risk, which included spontaneous abortion, infection, water breaking, fetal stress, and more that I’m sure I have forgotten. Although these risks are extremely low. She then went on to say that the amniocentesis would take approximately two weeks for results.
We asked if we could have the room to discuss our decision further and she was happy to oblige. Levi and I discussed further how the odds of us winning another medical lottery is incredibly slim and that the reality is the baby has a very low chance of survival with hydrops regardless of the cause. We had to ask ourselves if we walked away would we regret it? Would we wonder if we made the right decision? We decided to say a prayer together and we prayed that we would feel confident with the decisions whatever we chose, that we would be guided to the right one. After we prayed and discussed further Levi and I decided to no longer move forward with the amniocentesis. We called Dr. S back in the room and informed her of our decision. She supported us in it and said that we could change our minds at any time.
Levi and I left feeling confident in our decision to not move forward with the amniocentesis. That however long baby decided to stay with us would be up to him. We felt comfortable with the decision but heartbroken that we are accepting the reality that this baby truly does have galactosialidosis and we once again find ourselves in the difficult position of planning a funeral for our unborn child.
There are days where I still don’t believe this is my reality. Preparing for the death of another child is an impossible task. I can prepare for all the logistics but the emotional toll is something I find myself ignoring. I’m constantly in denial, I told Levi that logically I know this baby is sick, I logically know he is going to die, but there is a part of me that says it's not true that this isn’t really happening to me. Almost like I’m in the audience of a really horrible film and I’m hoping for the happy ending even though I know it's not going to happen, I still hope for it.
There are days where I’m in so much denial that it doesn't even phase me as I’m making lists that are associated with end of life care. Other times I’m so incredibly overwhelmed and angry at my situation that taking a shower is difficult. It’s rare that I emotionally feel balanced in this process, I feel nothing or I feel everything, one extreme to the next.
I’m becoming greatly overwhelmed with the planning of everything and the timing of it all. In a matter of days we are reminded of our son Stetson and the difficult short life he lived as we reflect on the anniversary of his coming home. While simultaneously receiving news that our baby boy will be joining him in heaven being crippled by the same disease that took his older brother. Georgi once again being excited to be a big sister again is no longer going to have that earthly experience. She once again is going through feelings of confusion and pain that her little 4yr old mind can barely sort out.
Again I find myself worried about the days to come. Stressed about having baby boy staying in utero risking death before birth or being born and living only hours. I’m completely in awe that again we are facing the reality of losing another child. My fear that God is going to take all my children from me is becoming dangerously closer to reality than misplaced anxiety.
I don’t know how long baby boy will live, what things we will be able to do with him, if I’ll be able to nurse him, if he’ll be able to come home, if we will have the opportunity to bless him. I don’t know what power prayer truly holds but I do know there is nothing anyone can do but pray. Levi and I are forever grateful for those who pray for us. For this purpose we decided to give baby boy a name BuckLynn Beckett Barker. Those who wish to pray for BuckLynn and us know that we do appreciate the sentiment.
My heart sank deeper and deeper as I read about this heartbreaking journey you are on 😓🥺 I can only imagine your desperation for a miracle. I wish there was something I could do or say for you and your sweet family. But there is nothing. Oh how my heart aches for you and for your family 😥 The pain you describe in this blog is tangible and heart-wrenching 🥺 I want to wrap my arms around you and cry together. I cant even begin to imagine your heartache and anger. I will pray for BuckLynn 🙏 and for you 😥
ReplyDeleteCandace expressed many of my feelings. I can't imagine what you are feeling and going through. All I can say is I know you are in the watchful eye and care of our Savior. Just as He cried at seeing the sorrow of Mary and Martha at the death of Lazarus, He cries for your great sorrow. He alone knows every pain in your heart, and I know there is a reason for everything you are experiencing. Lean on your good husband, family, friends, but mostly, your Heavenly Father and Savior. Someday, you will be with your sweet babies and raise them. Until then, they will watch over you and help you through this life. For now, I will pray for you and your sweet Buckland. ❤🙏❤
ReplyDeleteHello, As I read through your story my heart aches for your pain. I have never felt your pain and I cannot imagine it even with 5 miscarriages in my past. but something I read bothered me... I lived by this quote many nights when I sat and cried over my lost babies, so I am sharing it with you I hope it brings you some comfort. Trials are not always the result of sin. Elder Richard G. Scott "Just when all seems to be going right, challenges often come in multiple doses applied simultaneously. When those trials are not consequences of your disobedience, they are evidence that the Lord feels you are prepared to grow more. He therefore gives you experiences that stimulate growth, understanding, and compassion which polish you for your everlasting benefit. To get you from where you are to where He wants you to be requires a lot of stretching, and that generally entails discomfort and pain."
ReplyDeleteMany times during those years I wished Heavenly Father didn't think I was capable of so much growth, as I look back now... 12 years since my last miscarriage. I can see his hands molding, guiding, and shaping me into who I am, and though my growth has not yet ended... I love this version of me already. It doesn't take the pain away, but it is not your fault, or your sin, or whatever the person in RS said it was. I wish people understood more about sensitive subjects when making comments at church. I don't know you, but I pray for your family. I pray that angels will carry you through this and that someday you can look back and see just how far you have come. Hold on to the knowledge/hope that you will have all of your family reunited someday.
Just finished reading all your posts. It's been heartbreaking and I have no words to react to your trials. As someone in school to be a psych nurse practitioner, I will be amiss if I dont recommend your family meet with a grief counsellor. Especially for your daughter. And maybe family therapy. I am a member of the church as well, my faith has wavered at times due to health reasons. At times, I completely dissmiss the gospel and turn to the bleak idea of the non-existence of the afterlife. Just know your relationship with heavenly father is determined by you and its a very personal choice how you go about it. I hope someday, you find peace and I pray that day is not far off. Thank you for letting others get a glimpse into your life's journey.
ReplyDeleteI wish I had something helpful to say - I'm sorry you're in this incredibly difficult situation. ((((hugs))))
ReplyDeleteI just found you on Instagram. I had never heard of galactosialidosis. I'm so sorry it is affecting your beautiful family. I want you to know that by sharing you have educated people. Hold your children tight, in physical form and in your heart. If you need help reach out.
ReplyDelete