Having Hard Days
As we have gone on this journey we have had the opportunity to reach out to some people who have gone through similar experiences. I’m grateful that I have been able to talk with these people because it has allowed us to not only prepare for what’s to come but to ask them what they did and what they wished they did. Although it’s a terrible tragedy what these families have been through I’m so glad that I’m not alone and that we can prepare as best we can for the unknown.
This pregnancy has taken an unexpected turn; I at least have the opportunity to prepare for what’s to come. I can plan for a photographer for maternity, birth, and funeral services, for a memorial baby book, for a funeral that will be all prepared so when Stetson does pass I don’t have to grieve and plan that all at the same time. I have the advantage of being able to process it little by little. In a strange way this is a blessing, although it’s difficult.
I’m especially grateful to my loving sisters who paid for Levi and I to get a 4d ultrasound so that Georgi could see her baby brother alive and well. I never would have gotten one of these ultrasounds if I didn’t know how this pregnancy might end. Even if Stetson lives for a short while Georgi wont be able to be in the NICU to see him. Her only opportunity to possibly see him alive is through this ultrasound.
It was nice going to an ultrasound to see Stetson, knowing I wouldn’t get any bad news at the end. Although it took awhile for Stetson to move his hand away from his face so we could get a good look; and Georgi was a bit of a disaster it turned out great. Stetson was so cute yawning, sucking his thumb, moving his mouth and pursing his lips, he acted just like any newborn would act. The facility where we had this done said the best pictures are at 34wks because your baby has put on a bit of chub so their features are more defined. Stetson was only 24wks but he was chubby. Full cheeks and full lips. He looked like a fully developed baby. I know its because he is swollen from fluid, which is why I’m glad we got these photos done when we did.
Waiting for my next ultrasound and doctor appointment has been difficult. As I try to navigate all the things I need to plan and prepare for I find myself becoming very angry, impatient, and more and more devastated. I sometimes feel distant from the situation, when I’m talking to doctors, or counselors, even trying to figure out where we will eventually lay Stetson to rest; it is almost like I’m planning for someone else. Then reality hits, its not someone else its me, its my baby that I’m planning for. Realizing, I wont get the opportunity to see my baby smile for the first time, to walk, to say his first words, to be able to wrap his arms around me and give me a hug. He’ll never open a Christmas present or taste birthday cake or put his shoes on the wrong feet, while insisting that there on correctly. There is a whole life of a person that I’ll miss. I may only have him live for a short time and then watch the life that he could have had disappear. Yet at the same time he may not make it to a live birth. I may never see a potential life disappear because he may already be gone when I see him. People have told me that I’m strong and I have handled everything so well. Honestly, I want nothing more than to lay in bed all day and just let despair wash over me. But I have a little girl that needs me. I have to keep going and moving forward because she needs me.
My life has been full of unmet expectations as I’m sure many people experience this in small and sometimes extraordinary degrees. And I of course don’t want to sound ungrateful (for I still have a great many blessings) or selfish but, truthfully, I worry what other unexpected situations may come my way through all of this. I fear more stay at home orders and lockdowns or more restrictions on hospitals. I worry no one will be able to come to my babies funeral, or I wont be able to have a photographer in my hospital room because they’ll restrict the two person limit to one or even none. As I worry about these restrictions I become angry on behalf of the families and people who at the beginning of this whole Covid fiasco were affected by these extreme measures. I just pray restrictions improve or disappear and it doesn’t have to be a factor I need to worry about.
Levi and I decided our next ultrasound we really needed to stress our wants, needs, and concerns, we need to be diligent to advocate for Stetson regardless what the end result may be. Along with a two page list of questions and a wish list of what we want or hope to achieve we headed to our next appointment. While we waited for what seemed like a century in the waiting room we saw three other couples there. They all seemed to know each other as they talked about their reasons for being in a high-risk clinic. The entire time I thought to myself I will take all your risk factors in exchange for mine; advanced maternal age, twins, and risk of anemia. None of the couples seemed concerned or even slightly daunted by the fact that they needed a bit more monitoring. They held light conversation and laughed, it was just another appointment. The women with the twins even had an induction date in a matter of days. I was jealous; I wanted their pregnancy over my own.
This time I didn’t cry during the appointment. I knew I wouldn’t get good news, I was just determined to get more clarity on why monitoring was infrequent? Why we couldn’t do shunts while in utero? Why we weren’t having Non-Stress Test weekly? Understanding why we couldn’t get a clear answer on his chances if he was born alive. I just needed more information and Levi and I wanted to be clear we want to give Stetson the best chance of survival, although we understand his odds are very poor.
Our doctor was patient and answered all our questions. I asked for clarity on what exactly would take Stetson’s life. The doctor explained to me that while it is true built up fluid can collapse other organ function causing the babies passing, this is only true if the fluid is in the chest cavity around the heart and lungs, as it doesn’t expand. For Stetson, this isn’t a concern because fluid in the abdomen stretches and expands unlike the chest. Again, she stressed that Hydrops is the signal that something is wrong but will not necessarily be the cause of him passing. Unfortunately, we still don’t know the cause of his Hydrops and won’t know until after he’s born but all causes are severe and often cause passing of the baby in a very high percentage of cases. Stetson’s outlook hasn’t improved from what we were told before.
The doctor explained that placing shunts in utero is often not done anymore because of other severe risk factors involved and if they were to be done it would be done in the chest to compensate for lack of expansion. She explained that the location of Stetson’s fluid, is the reason for fewer ultrasounds. She said we could start weekly Non Stress Test at the earliest 28 wks. but cautioned us, explaining that earlier than 32 wks. can give very difficult to decipher results. Especially because the value they will compare Stetson’s results to will be a normal baby, due to his condition his numbers will be off anyway. She also explained that we could start steroid shots to help the development of his lungs but only the week before we anticipate delivery because they will be the most affective. We don’t want to just pump Stetson full of steroids if he is going to continue to do well on his own because all medications have some degree of risk and side affects. The doctor also stressed that if we want Stetson to have the best odds, keeping him in utero as long as possible will be best so we could avoid pre-term issues on top of whatever is causing the Hydrops. For this reason our goal, for now, is to get Stetson to at least 34wks.
As she explained all of this we felt more informed and that our doctors really were having our best interest in mind, though it didn’t feel that way at first. We also shared with the doctor that although we hope for a live birth we understand that he could pass at any moment. If he does, it is very important to us that we deliver him as soon as possible because I do not want him looking decayed. I already know that because of the swelling he isn’t going to look right. He will be somewhat distorted and I don’t want to aggravate his appearance in anyway.
I don’t even know what clothes to bring to the hospital because of his poor swollen belly he may not fit in much. Not to mention trying to get something over his head. This ultrasound, he had an increase of fluid in his face and belly. I’m very glad for that 24 wk. ultrasound because looking at the 3d images from the doctor’s visit makes me sad. His poor nose, lips, and cheeks are so full that the bridge of his nose is becoming distorted and not as defined. The doctor did indicate that although he has gained more fluid it doesn’t seem to be as big of an increase as it was from week 20 to week 23. However, I doubt that gives him any kind of improved odds.
The doctor visit left us with more information but not any more hope. We still feel defeat and still have to make difficult decisions. We also have to now communicate with a Neonatologist to create a NICU plan for Stetson. However, the treatment and care Stetson will get will all be dependent on if the doctors can get him stable. If they can’t stabilize him for care they will bring him back to us so we can give him comfort care and be with him as he passes. Another unknown that we will need to prepare for.
We still are debating about doing an autopsy. We decided to do chromosomal testing after birth but, there is a chance that it could be negative, meaning that the Hydrops was metabolic. This is a very difficult decision for me, I don’t like the idea of someone taking my little and fragile baby and cutting his chest open and taking pieces of him like a frog from science class. On the other hand I would hate to learn that the Hydrops could be prevented with pre-pregnancy intervention. I just worry about seeing my poor little baby at the funeral home with a stitched up Y on his chest and a swollen belly and face (maybe he wont look swollen). I dis-like the thought of him looking disturbed in a way. I can’t seem to fully explain it. I just know I’ll be going to the funeral home to dress Stetson for the service and I don’t want him to look like he has been abused or harmed. Another decision we have to organize and plan for. Levi said he could clothe him so I don’t need to his body but I want to do it. I want to be able to dress him with Levi and have that moment just our baby and us.
In some ways I know this tragedy isn’t even comparable to what others may experience or have experienced. I feel selfish at times when I feel miserable; in someway I need to recognize that I’m shielded from some other tragic scenario. However, although there are blessings that I have recognized through all this I can’t just remain positive all the time. It becomes exhausting and I just want to fall down and quit but, I can’t, what would quitting even look like in this case?
I’m reminded this tragedy isn’t just happening to me its happening to Levi and Georgi and other family. In some capacity everyone close to me is impacted in some way and at various degrees. I find myself feeling guilty for feeling depressed. I find myself feeling guilty because I have a little girl who needs me who I have been impatient with lately. I have apologized to her more times than I care to admit. She deserves better. I can’t change my circumstances they are what they are. I don’t know why I have been given this trial and I do not believe its punishment. Bad things happen to good people all the time and we may never know why. But I do know that God loves me and wants me to be joyous. For whatever reason, that joy just might be a little hard to come by. One day this pain and misery will be a distant memory and I’ll only remember that I have a special little boy who was destined for so much greatness that the earth couldn’t contain him. Life is and always will be unpredictable.
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