Finding New Hope

(Photo Credit: Savannah Merrill Photography) 

After my appointment with the “substitute” doctor (Dr. A) I began stressing more and more about having a C-section. This weighed heavily on my mind as well as the need to speak to a neonatologist. Although the doctor told me to wait a week before contacting the genetic counselor, as the point of contact, ensuring that the referral to the neonatologist was indeed made, I couldn’t wait. I decided to call her the following day. There was no answer. I left a brief message telling her I wanted to make contact with the neonatologist. I gave it another day, waiting for some sort of response and then again reached out, once again no answer and I left a message for the second time. 

After realizing that the “substitute” doctor was surprised we had yet to get in contact with the neonatologist I became frustrated. Not only was I staring down the path of C-section and not understanding why, I felt like I couldn’t get any clarity on the plan of action for Stetson after he was born. By this point it had been almost four weeks with no word of when a neonatologist could get in touch with me.

I called “Angel watch” so I could at least express how I felt to my counselor. I was frustrated and told her that I felt like because our baby has such a bleak outcome no one cares. They have given up on him and I’m now the delusional mother who can’t seem to understand my reality. But, I do understand! I understand that his odds are not great and his condition is very serious. Levi and I have already begun the process of planning his funeral. We selected a funeral home that will pick his body up from the hospital and take care of him before burial. We decided where the service would be held as well as the viewing. We have organized a guest list. We selected a casket. We designed his headstone. We discussed at length if he will still be swollen at the time of the viewing (he will be)  so we know what size clothing to prepare for. We have almost all details ironed out to prepare for the death of our baby. We wouldn’t do this if we were naive to the seriousness of his condition. My medical team cannot help me make arrangements for his death; they can only help me by fighting for his life. I felt like the only people fighting for him were Levi and I. The counselor listened and completely validated my feelings. She asked if I had another appointment soon. I told I had one with my regular OB but not my specialist. She told me to tell him all that I had been feeling and have him help relay the message to hopefully get a move on things.        

During the appointment with my regular OB (Dr. P) I decided to unload all my concerns on him just as the counselor had said. Out of all the doctors we work with, Dr. P is my favorite. I feel he listens and takes the time to address my concerns. I wish he were my specialist; it would make all of this easier to handle. However, because of travel and lack of specialists in our area I’m limited. 

I first told him about my concern of C-section and that of course I would agree to one if it meant the difference between Stetson being born alive vs. passing in Labor. However, the “substitute” doctor (Dr. A) made it sound like C-section was my only option and I wasn’t sure why. In previous appointments Dr.P stressed that we should try to keep our specialist consistent. (The specialist travel, causing some inconsistency.) Our current specialist (DR.C) in his opinion explains things a little more clearly. 

Dr. P was amazing at helping me understand why Dr. A would advise a C-section. He pulled up Stetson’s measurements from his last ultrasound. Stetson’s head is at 9%, on the small end of the spectrum for his gestation. However, his torso is above the 99% making him measure 36wks gestation. Dr. P explained this does not mean I need an automatic C-section but that we need to continue monitor Stetson’s growth. With his head no longer being the largest part of him it could make a vaginal delivery difficult. This means that my cervix has to compensate for more room after the head is delivered, possibly causing Stestson to get stuck leading for him to pass during delivery as a high possibility. This causes not only detrimental risk for him but also to me with severe tearing and longer than anticipated recovery. 

Dr. P’s explanation left me feeling more accepting of a C-section. I was so grateful for the time he spent explaining to me and helping me feel more at ease. I also explained to him my frustration with the lack of communication/ follow up from our specialist Dr. C and getting us into seeing a neonatologist. Dr. P said he would do the referral himself and to wait a little while to hear a response. 

(Photo Credit: Savannah Merrill Photography) 

A little more time passed and I finally got a returned phone call from the genetic counselor. I must admit I was short with her because I was bitter by her delayed response. It had been approximately a week. She informed me that she had been in contact with Dr. C and would ensure that the referral was made. Then she asked if I needed anything else. In my mind I answered “not from you” but gave a flat “no” instead. 

(Photo Credit: Savannah Merrill Photography) 

Some more time passed and I still had not heard from a neonatologist. I decided to call Primary Children’s Hospital to see if a referral had been made as well as Dr. C’s clinic. Primary Children’s had not received a referral and Dr. C’s clinic had informed me that one hadn’t even been made yet. I was fuming by now. A month! and full month! had gone by from the time the referral was intended to be made. I expressed my frustration to the receptionist and told her I wanted to be informed once the referral was made. 

The following day Dr. C called informing me that she made the referral. When I questioned her on why it took so long I wasn’t very satisfied with her answer. She basically said that she only mentioned the referral but didn’t plan on actually making one until we were closer to delivery. Then she mentioned that Dr. A was going to make the referral himself. This didn’t make sense because he was surprised we had not yet heard from the neonatologist during our appointment. Not to mention the genetic counselor told me that Dr. C was in the process of making a referral about 10 days previous. Although I was happy a referral had been made I didn’t think any of her excuses were acceptable. However, there was nothing more that could be done except wait for a phone call from the neonatologist. When she asked me if there was anything else, I brought a possible induction date at 35wks for Stetson. She quickly shot that down and said we really should go as close to term as possible. I voiced that I was worried the closer we got to my due date the more likely he is the pass to which she responded, “well that is just the nature of your situation”. This response shocked me and I couldn’t say anything. She said we would discuss it more at my next appointment. I was left stunned and hoping I’d have a referral soon.  

I waited a day and half and finally got a call. The receptionist suggested some names to me but I had some specific neonatologist in mind. When I asked her about the names I had found, she responded by saying she didn’t recognize any of the names. This seemed strange so I asked her to list the doctors she did have. She rattled off about five names and then said DR. C. “DR.C? That's my current doctor.” This made the receptionist and I very confused. I told her I was supposed to get a phone call to make an appointment with a neonatologist not a Maternal Fetal Specialist. To which she responded and said that they work closely with neonatologists. “You don’t understand I have a Maternal Fetal Specialist, Dr.C. I need an appointment with a neonatologist so that I can make a NICU plan for my son.” She said she would figure out what went wrong and get back to me. 

I was beyond frustrated at this point. Did my doctor make a referral to her own clinic? I struggled believing making a referral should be this difficult. It should just be a phone call! I called Levi just fuming from the ordeal and told him that I was done with Dr. C and wanted to search for a new doctor even if it meant driving two hours away each week. I began doing some research and called the Clinic and asked what was the earliest appointment they had. Only one doctor was available in the first week of February. I told the receptionist I wanted that appointment. At the time she couldn’t make it and would get back to me. I suppose each Doctor has their own scheduler. So once again I was stuck playing a waiting game. 

The last time I saw Dr.C was mid December. I had an appointment with Dr.A at the beginning of January and an appointment with Dr. P a week after. By now it was the 20th of January. Over a full month had gone by with little to no contact with Dr.C and no word about the referral. I had become overwhelmed and just tired of the lack of communication. I typically cut Doctors a lot of slack, I understand they have many patients to take care of and I’m sure there are things that go on behind the scenes that we just don't understand. I generally believe that most doctors really truly care. However, the lack of communication with Dr.C made me feel defeated. I was frustrated because every time we actually met with her we had great appointments although the reality is we have met with her very little and her follow up every time has been less than satisfactory. I was done! I had one more appointment with her scheduled for the 27th, which I was not going to cancel because I wanted to ensure that I didn’t miss an ultrasound. I figured one more appointment and then I could start fresh with someone new. I worried about getting the new doctor caught up with our goals and wishes for Stetson but overall felt that it would be better for my sanity and of course all my records would be handed over to the new specialist anyway. I couldn’t focus any more energy on the referral fiasco. I just needed to make it to my next appointment and pray that by then a referral would be made correctly. 

THURSDAY

The next day I woke up thinking that Stetson hadn’t moved very much the day before and he typically moves a ton in the morning, but this morning was quite a bit less. He still moved so I wasn’t too concerned and felt like maybe it's due to his swollen belly getting so large. I decided to go to Dr.P’s office just down the street. I would go in and have them check his heart beat (Dr. P said I could come in anytime just for that purpose). I waited until late afternoon to do so because I wanted Gerogi to have her nap and he still occasionally moved so I just chalked it up to being overly paranoid. I took Georgi with me because it would be such a short appointment and the office knows that my options on childcare are limited, us being fairly new in town, so even with Covid they let her in. I carried Georgi through the parking lot because I didn’t bother putting on her coat and wanted to get her inside quickly. But when I got in I was so out of breath, like I just ran a marathon. Then my side cramped a little. It was just a little uncomfortable and not uncommon for me nowadays trying to carry a toddler while sporting a big pregnant belly. The Covid police asked if I was all right and if I had an appointment. I told them I was fine and just wanted to check my baby’s heart rate. They asked if I wanted to go to my clinic before trying to go to labor and delivery. I decided with being out of breath and looking flush I might as well go to Labor and Delivery just in case the office sent me there anyway. So Georgi and I took the elevator to the second floor to Labor and Delivery. I checked in and told them that I was sorry I had Georgi with me and I could try to have someone come get her but the front desk said not to worry about it. 

A nurse greeted us and asked what seems to be the problem. Before I could answer her Gerogi throws her hand out in front of her and shouts “NO, don't touch him, don’t touch Stetson.” The nurse just laughed as I explained to Georgi that it was okay for the nurse to touch my belly so she could ensure Stetson was okay.

I didn’t get in a gown, The nurse said lets just hook you up to monitor to see if anything is happening (we both thought it would be a quick check). Well the monitors told a different story. Stetson was fine but I was having contractions and fairly frequent. I couldn’t believe it. Other than being slightly out of breath walking into the building I felt nothing. The nurse called the doctor after I gave her the run down of Stetson’s condition and what that means for him and delivery. As I waited for the nurse to return I called Levi to come get Georgi as it had been awhile now and she was not sitting still and of course I literally couldn’t do anything with my pants down at my ankles. 

The nurse came in and said the doctor wanted to do a cervix check just with my history of quick labor and with Stetson being high risk. I called a friend to take Georgi so Levi could stay with me at the hospital. When I got checked I was 1cm dilated and 80% effaced and Stetson is head down. I couldn’t believe it. I was convinced Stetson wouldn’t turn because every ultrasound we had up until then he was in the same spot, breech hugging the placenta like a pillow. But the nurse confirmed it with ultrasound he was head down. I also couldn’t believe I was in labor because I truly felt nothing. The nurses were pretty stunned by this but I told them with Georgi I couldn’t feel contractions until I was a 4cm or a 5cm dilated. The doctors also felt it was important to monitor me over night because of how quickly my first labor went. I was only in labor for six hours with Georgi and typically your second labor is half the time of the first. Also my sisters have a history of precipitous labor.   

I had mixed feelings at this point. I was only 31wks. I always felt that I wouldn’t make it to 32wks and so far my mother's intuition hadn’t been disproven yet. I also became angry that we hadn’t met with the neonatologist to set up a plan for Stetson and now he was trying to come. I told the nurse and doctor we still were waiting to hear from the neonatologist and would like to desperately get in contact with one so we could discuss our plan for delivery as well as our plan for his care in case he came. The doctor said she would get on that and would discuss any plan of action with the on call specialist down at the U of U hospital. 

The doctors decided to monitor me through the night and if there was change to arrange for emergency transport (to hopefully avoid delivering in Logan). They also decided to give me Steroid shots to help the development of Stetson’s lungs. I also was given an oral medication to help stall labor. They were thinking of giving me a shot of terbutaline however it can cause a rapid heart rate and throughout this pregnancy I had elevated heart rate so we decided against this intervention. Levi contacted his grandmother and she took the two hour-long trip so that she could help with Georgi and Levi could be with me. 

We let Georgi stay the night with our friends since it was late and she had already fallen asleep. Levi would bring her to Nana in the morning. In the meantime I had Levi make me a hospital bag as I didn’t have one put together yet. Levi stayed with me most of the night but I told him to go home and sleep because he would be more comfortable and we live literally up the road, so he could get to me fast if anything changed. 

FRIDAY

The next morning Levi came straight over and spent the day with me. My labor had slowed to almost nothing and I hadn’t made any progress in the dilation department. However, we still were waiting to hear from the specialist and the neonatologist. While we waited we created a list of approximately ten questions to ask them.  

Georgi’s pediatrician was making his rounds to all the new babies when he discovered that I was there. The nurses gave him some background and he decided to come see me. He asked me how I was doing and I told him our stress of not getting to speak with the neonatologist but we had a list of names of some in mind. Without missing a beat he said I can make that referral for you. Then he continued and said “we don’t have a neonatologist here today because they travel up as needed but we have a NICU nurse practitioner who has worked at Primary Children’s and I’ll be sure that she pays you a visit today.” 

I felt like crying with gratitude. My daughter's doctor who has just barely gotten word of our situation was going to ensure the referral was made and that we could meet with someone face to face. This made a world of difference and I believe it was his push for the referral and intervening that allowed us to finally get in contact with the neonatologist that day.  

We received a phone call from the Neonatologist mid morning. A few hours after Georgi’s pediatrician had left us. Dr. Y who was one of the names we had requested. He was very sympathetic to our situation and what we were dealing with. He really tried his best to answer our questions as thoroughly as he could asking at the end of each response “does that make sense?” or “Did I answer your question fully?”. He explained to us that the team at primary children’s really does want each baby to make it and that they are well trained and well equipped to handle difficult situations. He also explained that Hydrops are difficult to treat at times because there are “literally hundreds of causes”, some more manageable than others. He mentioned that there may come a point where the doctor will turn to us and say “we have done all we could and he’s not responding. What do you want us to do?”. He also mentioned that progress no matter how small is always a reason to keep trying and fighting. He was honest and I appreciated it. He said “sometimes despite our best efforts it's not enough.” Dr. Y said he would call us back that afternoon as some question we had he couldn’t answer without consulting the medical team as it had to do more with the plan for delivery. We told him we were going to switch doctors so if he consulted with Dr.C we would like another specialist involved as a second voice. I gave him the name of the doctor I was planning on scheduling with. 

As he talked I began to cry. Levi immediately took my hand and told me it was okay to cry. When we got off the phone I looked at Levi and said, “I can’t give birth to a dead baby, I need him to live.” Levi still holding my hand comforted me and told me that he’s confident that won't happen and that according to the monitor he is doing good and that he was still here with us.

I began imagining all the difficult things that would greet my baby as he enters the world. His journey has barely begun and already he is climbing mountains to slay dragons. Unfortunately, his tale may not have a happy ending, but may end up being a battle he can’t win. I know we all go to bed assuming we will wake up in the morning. Very few of us are aware of when our life on this earth will end. More often than not I think this is a good thing. It has become emotionally and physically exhausting wondering when this journey will end for Stetson and planning for as many scenarios as I can. Part of me feels like it could be days while another part of me feels it could be just hours. It wasn’t until Wendy the nurse came in that I finally felt like maybe my baby actually has a chance at surviving this battle. Maybe he'll come out fighting and he will slay the dragon. 

Nurse Wendy couldn’t be described as anything less but an angel. She truly had given me the ability to finally feel hopeful for Stetson’s outcome. Throughout this journey I have wanted to fight for Stetson but I just felt like he wouldn’t make it. I truly was hopeless and as a mother that is a really sucky feeling. I’m supposed to champion for my child but I emotionally couldn’t get there.

Wendy is a NICU nurse practitioner that worked at Primary Children’s Hospital. She came in to visit us and just let us talk about all our concerns. I told her that I was struggling with not having an induction date or not allowing Stetson to come when I went into labor (maybe it was a sign that he needs to come to get here alive). I explained that even if Stetson lived for an hour It would make all the difference to me. I just can’t bear the thought of giving birth to a dead baby. I told her I understood that him being born closer to term would mean that he was more fully developed. However, as we got closer to term that meant we were also getting closer to that 10% chance of life. I worry that if we continue to push closer to term we could potentially have his life end before he could be born. Wendy looked at me very sincerely and said, “I don’t want to give you false hope but I feel like that 10% number is low. I can tell you haven’t been given very much hope at all. Your doctor is good at what they do but they deliver the baby and that's it. Sometimes they never know what happens after that. The doctors and nurses in the NICU want your baby to live more than an hour and we will fight for him.” Of course I’m paraphrasing, but Wendy finally gave me some hope that maybe Stetson would make it. She even talked about some other babies' journeys and how some of them go home after a long NICU battle. She even said one baby had Hydrops Fetalis and stayed 8 months in the NICU and went home and they never were able to discover the cause of the Hydrops. While Wendy was talking to us Dr. Y called back, Wendy stayed with us as we listened to him on speaker. He explained how the medical team would take care of Stetson when he is born. Wendy chimed in a few times asking about any further scans or testing that may be beneficial before birth. Dr. Y said he believes we are past that point and should continue to try to get Stetson more to term to increase his chances. Levi and I were grateful for Dr. Y’s call and glad that Wendy came and stayed with us through it all. If anything it was worth staying in the hospital for the night just to get to meet Wendy and finally be given hope that I otherwise lacked. 

After Wendy Left us the doctors informed us that with contractions slowing and no progression towards labor I could be discharged. I was happy to go home and see Georgi and having this new hope I felt more confident going home. I also was grateful to at least get the steroid shots to help Stetson’s lung development, although no one ever told me how incredibly bad they sting! I also felt more confident now that our Medical team was finally communicating together. It's a bit tragic that it took me going into preterm labor and my daughter's pediatrician to light a fire under them to get together. Levi and I felt maybe that was the reason we were meant to have that scare and it was all worth it. 

Georgi was so happy to see me when we got home. I was really only gone for a night and a day but I’m sure that felt like forever to her. She shouted “Mommy your back. I missed you.” 

SATURDAY

The next morning she ran in my room making sure I was still there. It was hard trying to remind myself I was instructed not to pick her up especially when she is saying with her arms stretched out “hold you Mommy, Hold you”. I just told her I would hold her on the couch. That morning Levi went to do some shopping while grandma and I stayed with Georgi. I decided I better “perfect” my hospital bag just in case anything happened again. Levi did a great job but I made sure I packed some makeup and contact stuff, as well some extra “hospital” wear. Levi told me I was doing too much and should sit down. I told him I really wasn’t doing much and I would sit down and relax soon.

Levi went out to get groceries; I stayed behind with Georgi and grandma. The day had just begun when I started feeling tightness in my belly. Typically tightness isn’t an issue, I feel it all the time it seems like. However, I definitely knew these were contractions because it would release and tighten again coming in waves. It wasn’t very painful but uncomfortable. I decided to sit a while hoping it would subside. Of course it didn’t stop. I called Levi and told him to hurry home. Georgi was down for her nap when Levi arrived. I left my bag at the door deciding that Levi could come back and get it later if needed, but rushed back to the hospital. I just kept saying, “I hope I’m just crazy and nothing is happening.” I walked into Labor and Delivery and told the nurse that I felt like contractions started again but wasn’t entirely sure. Luckily it was the same nurse that checked me in the first time I came in on Thursday. I told her “I hope I'm just paranoid.” But when she checked me my fears became real. I was contracting frequently and dilated to a 3. I began crying worried about Stetson and not being at the hospital that could tend to his needs. The nurse immediately called the doctor to ask about transport. The doctor came in to talk to Levi and I. They called for transport to ensure I would get to the U of U hospital. They started me on Magnesium to stall labor as well as the oral medication they gave me before. They also inserted a catheter because they have to measure urine output while on Magnesium, which is awful and uncomfortable by the way. I started crying again, “I told Levi I felt embarrassed.” Levi held my hand and told me everything would be okay. 

The nurse came in and told me that I wouldn’t be going by life flight but by ambulance because of the snow and fog. She seemed a little worried but was telling us “its’ okay we’ll make it.” When she came back again she said they actually decided to go by plane after all. Meaning that an ambulance would take me to a small airport to salt lake then another ambulance would take me to the hospital. Later we found out the plane was for a child that got injured. So several hours later the ambulance was how I left the hospital. Levi unfortunately couldn’t come with me. He walked with me to the ambulance then rushed home to grab my bag and a few things for himself and to prep Grandma with a car seat so she could take Georgi to her house. 

The ambulance came with a full team for Steston and I, an OB Doctor, nurse, and a Neonatologist. One of the nurses said the ambulance was able to set up an entire ICU unit if they needed it. Luckily I was stable enough they didn’t need to ever turn on the lights and race to the hospital. When we got there Levi was just behind us by about 10-15 minutes. We actually made it the same time as the life flight due to the fog they were unable to land for forty minutes. 

I still had Magnesium in my IV and would stay on it for quite some time. I wasn’t allowed to eat in case I ended up needing a C-section. Luckily the nurses sneaked Levi a dinner plate. It was evening by now and Levi and I met with several doctors including an OB, Neonatologist, anesthesiologist, and several nurses. I had to essentially make a birth plan right then and there in case labor wouldn’t stop. We discussed the risk of C-section, epidural, and Stetson’s care. I also got an ultrasound to measure Stetson’s belly. Stetson measured full term in the waist so we decided vaginal delivery would still be the best choice at this time, since he isn’t larger than full term. I told the anesthesiologist that I would still like to go epidural free “I feel like I can get him out faster if I don’t have one.” to which he responded “you probably can.” We ironed out more details just in case Stestson decided to make his appearance but luckily the Magnesium seemed to stall things.

I spoke frequently with the neonatologist and OB about the pros and cons of C-section versus vaginal delivery. I could tell the doctors were still really pushing for a vaginal delivery though it was totally my choice. I told them that I just wanted to do what was best for Stetson. The neonatologist and OB both admitted that they couldn’t tell me what would be easiest on him until delivery even began, Stetson could go into distress during labor and during a C-section but it's near impossible to predict. The OB was able to clearly lay out why vaginal is overall better for my health. She said she doubted a 4th degree tear would happen to me at this point because Stetson wasn’t larger than a full term baby and most people don’t tear that far, not to say it couldn’t happen. However, she said fourth degree tear is still better than C-section because there is less risk to vital internal structures, which you risk damaging with a C-section. I still can’t imagine a 4th degree tear is a better recovery compared to a C-section but I understand there is more risk overall with C-section than vaginally. Of course I’d prefer a vaginal delivery. I just worry about the consequences to Stetson and myself. After talking more we decided at least for now to try vaginal. The neonatologist said that if delivery didn’t happen soon and Stetson got more fluid by the time of delivery they would drain his stomach while in utero right before to shrink him down to a more deliverable size. The Doctor said typically they don’t like to drain fluid because the more intervention you do (that breaks the skin) the more risk there is of infection. However, in Stetson’s case he is so large they would drain it at least once and have the fluid tested. It just depends on whether they do it during delivery or when he is fully delivered.      

SUNDAY

I thought for sure Stetson was going to come the next morning. It felt odd trying to stop labor, almost unnatural, of course we knew 31wks isn’t long enough and later would be better. The nurses tried stopping Magnesium several times but every time they did contractions would start again. It wasn’t until 6am the next morning that I was finally able to get off the Magnesium with no contractions and thank goodness for that. Magnesium didn’t make me feel fuzzy at all but oh my goodness; it makes you feel like you're dying of heat and you can’t sweat to cool down either. I was grateful to finally have that stupid catheter out and to be able to feel like my blood wasn’t boiling. 

After the doctors were confident I wasn’t going to start labor again they moved me to the postpartum room where I would have frequent interval monitoring and be kept for observation. I finally got to eat as well and I was starving since I only had a muffin before rushing to the hospital Saturday morning. Levi and I also were able to get some sleep. The possibility of delivery weighed heavily on us through the night making sleep near impossible. We didn’t leave the hospital until Tuesday afternoon. During that stay we talked to several doctors about our options, had an in depth ultrasound, and spoke to a social worker about the Ronald McDonald House. 

MONDAY

Levi and I were hoping that the Ronald McDonald house would be an option for us as it was basically part of the U of U hospital. It would allow us to be near the hospital that we needed and if anything were to happen we could guarantee that Stetson would be able to get the care that he needs in the NICU and with the doctors that he needs. The social worker crushed all our hope in an instant. She said we didn’t even qualify for a referral because the qualifying factor is living 100 miles away from the hospital, we live 87 miles away. This mile requirement is because they are trying to disqualify people due to Covid to decrease the amount of residents. The original mile restriction was 35miles. I became super overwhelmed and started crying. She handed us a sheet of hotels or extended stay hotels that work with the hospital for discounts but none of these were options for us. It’s possible that I could be pregnant for one more week or several weeks. Paying for hotels all that time would essentially cause Levi and I to pay double rent. Not something that we could reasonably afford. I felt like every possible option we had could have dire consequences. If I went home and went into labor I risk having to give birth at that hospital and praying that they can stabilize Stetson for transport. If they can transport him I'm stuck at the other hospital until I get discharged and then Stetson has a possibility of not living long and I wouldn’t be able to be with him as he dies. Staying with Levi’s grandma although we are closer but still 40 minutes away and depending how fast labor happens I risk giving birth at another hospital and Stetson may or may not make it to the U of U hospital. Not to mention Levi has to go back to work, he can’t just stay with Georgi and I waiting for a baby that could come in a week or six weeks. Plus he will need to take time off to be near us while Stetson is in the NICU. Any option I had could lead to Stetson dying alone, Being transported alone, me giving birth alone (because Levi can’t make it in time), Or us not being able to get to the hospital in time if Stetson takes a turn for the worse if he lives for a while. All these consequences flooded my mind and the social worker basically told us she wished she could do more. 

I was so upset by the news and just thought my baby could die all alone without Levi or I there to hold him as he takes his last breath. Or Levi could miss the birth; miss seeing him in his final moments. I don’t know if I would have the strength to deliver on my own or worse not have the voice to properly advocate for Stetson on my own.  As I was trying to gain my composure a small woman walked in the room. She was truly genuine as she told me everything was going to be okay and it would all workout. She even told me I looked so pretty in my nightgown and robe and that I had just the perfect belly. Had she not been so genuine and sincere I would have rolled my eyes. Despite what she and Levi saw I felt and looked like a dump truck. Her name was Jody and she is some sort of recreational therapist, essentially a person to bring patients such as myself things to do so we don’t get bored in the hospital. She was truly one of the sweetest people on the planet. I told her I didn’t need anything but she came back later that day with a new nightgown for me to wear. She said, “I picked this color because it is similar to some of the colors you have on and it will look so pretty on you.” I was so grateful to see someone who you could tell genuinely loved what she did.    

Jody helped Levi and I reflect on the news that the Ronald McDonald house wasn’t an option and we were able to more clearly discuss what we could do to prevent catastrophe. Stupid Covid just ruins everything. Isn't the Ronald McDonald house, I don't know, essential? At least families here could stay together whereas in some other locations they don’t allow siblings. After processing all our options we decided it would be safest to have Georgi and I stay with grandma so we are closer to the hospital and I could have help with Georgi since I’m on pelvic rest which means avoid picking Georgi up, no exercise, no heavy lifting, no sex, and no long walks. Levi will travel down on the weekends to see us.                

TUESDAY

The ultrasound showed the same as before, increased fluid but staying contained under his skin and in the abdomen. Dr. C actually read our ultrasound and came to talk to us about the findings. She, as well as several other doctors find it so strange that the fluid is staying in the belly area so dramatically. They are glad it’s not in his lungs but are not sure if this containment gives him a better prognosis or not. This makes them feel pretty confident that the fluid will not move to his lungs. Although his fluid is in the belly he still will need intervention to expand his lungs because the pressure will weigh down on his diaphragm preventing him from breathing on his own. She again mentioned the possibility of draining the fluid in his belly right before labor to help give him room through the birth canal. We decided that our tentative plan is to still try for a vaginal birth. Before she left we informed her of our plan to stay with Levi’s grandma so we could be relatively close to the hospital in case preterm labor started again. She agreed that would be a good idea and changed all my future appointments to her partner office near grandma’s house. 

Although we were intending to “fire” Dr. C it felt unnecessary at this point because I was going to be seeing another doctor at her partner's practice from now on. Also she no longer would be making decisions alone but would need to consult a whole medical team. I’m also at the mercy of the specialist on call when I go into labor.   

After a very long unexpected stay at the hospital I was so happy to finally be discharged. I couldn’t wait to get back to Georgi. I was feeling so guilty that I had to leave without telling her goodbye or giving her a kiss. I called her every night before she went to bed and it just broke my heart hearing her voice sounding sad saying “mommy I miss you. Hold you mommy.” I also sent her short little videos letting her know how much I missed her. Although Levi and I were stressed about being far from the hospital I was at least grateful I was stable enough to go to grandma’s home and be with my little girl. 

(Photo Credit: Savannah Merrill Photography) 

Although the days spent in the hospital were filled with all kinds of struggle both emotionally and physically I was able to finally get some encouragement that maybe Stetson has a chance. Perhaps his life won't end in hours or days but maybe I’ll be able to bring him home. It's still a difficult place to be in because I’m staring down a dark tunnel with only a small candle leading the way. Every step I take I get a little more clarity but as I walk this path I get more twist and turns and an endless possibility of potential outcomes. 

I didn’t expect my life would turn out as it did. In fact I wouldn’t have been able to predict probably 5% of what my life has been like over the last 10yrs. I have had quite the unexpected journey. However, I’m glad for my husband, who I swear has such thick rose colored glasses he couldn’t see me as anything else but beautiful even if he tried. I’m so thankful that I took a leap of faith and agreed to move to a state that I didn’t want to ever move to. Now I’m near one of the best hospitals in the world that could take care of my baby. I’m so grateful for all the nurses that came in and tended to me. They were all amazing! Sympathetic and genuine in their care and conversation. 

This pregnancy with Stetson has been physically and emotionally daunting. All the while though people, friends, family, and strangers have reached out to help and have tried to carry us through it. I don’t know how this journey will end but I can already see angels around me and my family, helping us get through it. For that I am forever grateful.