Thursday, October 15, 2015

Losing our son: Part Two

On Monday, September 28, 2015, we went to the Maternal Fetal Medicine doctor’s office for our scheduled ultrasound appointment at 9:00 am after our 3 PUBS procedures the week before. This is when my husband and I heard that our precious son Jackson no longer had a heartbeat. Our doctor brought in a second doctor to double check and he confirmed that Jackson didn’t have a heartbeat. They then have us two options for our next step:
1.     D&E and be able to go home after an hour. This option would most likely have our son come out in pieces much like a late term abortion.
2.     Check into Labor & Delivery and be induced to deliver.
We chose option 2 because I wanted to see my son whole and deliver him naturally.
            By 10:00 am, we were at the hospital getting checked into Labor & Delivery. I had my blood drawn, received my IV for fluids, had a band around my belly to check for contractions and had many nurses and doctors come in to tell us how things were going to go through the process of giving birth to a stillborn.
            Besides all of the medical decisions we had to make for myself during labor (pain meds, inducing meds, etc) we also had to make decisions and hear all of the options for Jackson. For myself, after having multiple epidurals and spinal blocks days before during the PUBS procedures, I was pretty much over those and wanted to give my back a break! I opted to see how long I could go without any pain medicine and when I needed some I only wanted to have a drip through my IV (which would only allow medicine every 10 minutes). They also offered me medicine to relax me during labor where I wouldn’t be fully aware of what was going on and I declined that as well. In a strange way, I wanted to be able to feel everything and remember every single moment of giving birth. I knew that Jackson was already in his forever home in heaven and I wanted to remember every single second that I had with him (his body).
Then, Jon and I had to decide if we wanted to have an autopsy performed on Jackson and if so, just a partial autopsy or a full one. Did we want to bury his body or have him cremated? What funeral home would his body be released to? Where would he be buried? These are things no parent should have to go through and decide. We don’t even know the answers to these questions for ourselves! We didn’t need to decide until before we left of any of those questions thankfully, so we were able to process and make decisions. We did decide to do a full autopsy and then have him cremated. We didn’t have any answers to why he was severely anemic or the hydrops (which most likely was due to the severe anemia). We know that even with the autopsy we still may never know the cause. Hopefully something will come from the autopsy so we will have answers, or maybe something from the autopsy will trigger a light bulb in one of the doctors. All of our doctors in the MFM team were amazing and we felt like they were truly trying to solve this mystery and save our sweet Jackson. Jon and I also hope for the doctor’s sakes that the autopsy would reveal something since they tried everything to find answers for us!  Every doctor/nurse knew our case and genuinely cared for us and Jackson!
            By 11:30 am I had my first round of cytotec (vaginal inducing pill). At 4:00 pm I had my second round of cytotec, and at 8:00 pm I had my third round. Nothing really seemed to happen with the first three rounds. I only dilated to 1 cm and I was having some mild contractions that didn’t really hurt. The doctor said that since I was only 22 weeks into my pregnancy I only needed I dilate to 3 cm. Since he was so small there was no need to dilate to the full 10 cm. That was kind of a relief to me otherwise we might be there for days at the rate I was dilating. At midnight, I had my fourth round of cytotec. By this point my contractions were pretty regular and becoming more uncomfortable, but I was still only 1 cm dilated. By 12:30, I asked for the pain medicine drip that went through my IV. I figured that getting it now would help me relax some to hopefully get some rest to gear up for a long night/second day of labor. Luckily, Jon and I were both able to get some sleep and at 3:30 am I got my fifth round of cytotec. Within the next hour, my contractions were constant and painful, even with some pain meds.
Around 4:30 am the doctor came in to check me and said I was dilated to 7 cm and my water would break soon. He walked out the door and I could feel the baby coming out. Jon rushed to get the doctor and he came in time as Jackson was in fact coming out. My water never broke and I delivered Jackson without pushing. Tuesday, September 29, 2015 and 4:49 am, Jackson Aaron Mueller was born. He was born still inside the amniotic sac (why my water didn’t break). The doctor and nurses said that was very rare to see a baby born still inside the sac. We didn’t hear him cry, which is the only sound a new parent wants to hear and it was such a bittersweet moment. Once he was delivered, the physical pain wasn’t as bad, all the pressure I had was gone and now I was just sore. I threw up a few times shortly after giving birth and once more hours later.
My OB arrived seconds after Jackson was born and was there to check on me. One of the doctor’s biggest concerns for me was if I’d be able to deliver the placenta on my own or if I’d have to go to the OR and have it removed. With early deliveries and the fact that the baby was smaller there was a risk that it wouldn’t come out on it’s own. After my OB checked me, he thought it was low enough for me to deliver it on my own and with one push it was out! Finally, one thing that wasn’t worst-case scenario during the last three weeks of our lives! Not going to the OR meant quicker recovery for me, which was great news.
After about an hour or so, I was exhausted both emotionally and physically from giving birth to a stillborn. The two nurses suggested that Jon and I get some sleep while they took Jackson to weigh, measure, and get foot/handprints as some of the only keepsakes we have of our sweet son! My sister in law also went with them to capture precious photos of Jackson and I have about 150 photos that I will cherish forever! I won’t be sharing too many online in respect for our family. I’m happy to show anyone who would like to see them, but want to keep them private (off the internet). Jackson was born at 22 weeks on the dot weighing 14 oz and measuring 9 ½ inches long. He really weighed less than 14 oz but due to the hydrops he had so much fluid throughout his entire little body. His entire body was red and the first layers of skin were just beginning to form. Jackson was perfect in every way; he had the cutest hands and feet, chubby and adorable! His body was FULLY formed, including having fingernails on every finger. Even at this age, he resembled his Daddy and his older brother in many ways. He was cute, I just wanted to hold him and kiss him and never let him go. At the same time, he was so fragile that I was afraid to hold him for too long. Obviously he wouldn’t feel any pain, but with his fluid filled hydrops body I was afraid of popping him (as crazy as that sounds). Trying to explain it is similar to a fluid filled blister, but instead it was his entire body.

We decided that we wanted Jared to meet his baby brother, so that maybe it would help him understand that his brother was born, no longer in Mama’s tummy, and was now with Jesus in heaven. Jared was so sweet meeting his brother and then snuggling Mama and Daddy. I’m so glad that we had Jared meet Jackson and I really believe it helped Jared (and us). As hard as it was, it was the right thing for our family! 

Jackson had many visitors that day and is one loved little boy! By 8:00 pm, I was ready to be discharged. Jackson needed to get a couple samples taken for biopsies, but I was ready physically to go home. I couldn’t wait to go home and leave the hospital where so many sad things happened. Jon and I were not prepared for the emotional turmoil of leaving the hospital without our son! Walking him to a room to leave him at the hospital for an autopsy was the LONGEST, SADDEST, HARDEST walk of our lives! We just wanted to be able to take our son home, but obviously couldn’t.  Leaving the hospital alone was the most difficult thing of the entire process. I thought giving birth to a stillborn would be the hardest, but leaving him forever was by far harder! 
On Thursday evening we had a beautiful service at our church for Jackson, which was so hard and so beautiful at the same time. Our Pastor did an amazing job and I’m sure it wasn’t easy for him either, preaching to a group of crying people. As hard as it was, it also gave us so much comfort. Knowing that Jackson is in heaven and not in any pain makes it easier to cope. I know that days will get easier. Right now I’m pretty much living minute by minute. Having Jared helps me keep busy because a 3 ½ year old boy who is always on the move doesn’t allow for down time.
Two weeks after giving birth I still have the constant reminders of giving birth (moms, you know what bodily things I’m talking about). My pregnant belly is no longer there, which happened quicker than I thought and makes me sad. I still could cry at any minute and still don’t have the courage to go out in public where I know lots of people. Going to the store for errands is hard but not as hard as going somewhere where I know pretty much everyone. That is something new to me because I have always been a social person. I appreciate everyone’s support and love everyone who has prayed, helped, or just been there for us during the last month, but it’s just hard to face everyone! I don’t mind talking about Jackson and I’m happy to tell his story, but just know that if you see me in person and we talk about him, I will most likely cry! Which is also new to me, because I’m not normally a crier, I’ve cried more in this last month than I have my entire 30 years.
On Saturday, October 10, 2015, we had a small burial service for Jackson at the church where Jon’s grandparents are laid to rest. Jackson is buried in between them and it is so special. It was a beautiful day and Jared was so sweet. He never left his brother’s side and took part in the entire process. We lit a lantern and sent it up to heaven for Jackson and the day brought us all such peace!

We will never forget Jackson and never fully “get over” or be able to “move on”, but I know that it will get easier and that eventually I won’t just burst into tears at every little thing. It took us 2 ½ years and one miscarriage to conceive Jackson and he brought so much joy to our lives in the 22 weeks he lived inside my womb! Our lives will always be better because of him. Our lives will always feel incomplete without him, but know that God has a plan for him. We might not know His plans, but something good will come from this!
Jeremiah 29:11
For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
Also, knowing that we will see Jackson again in heaven is so reassuring and comforting. Jackson is in heaven with his brother or sister we lost before him and his many family and friends who are already there.
Throughout this journey my dear husband had been by my side. We have been together for almost 10 years and I didn’t think I could love him more. After losing Jackson, I feel even closer to him and love him more than I did before! I couldn’t do this without him and know that we will get through this together and be stronger parents for Jared. I even feel closer to Jared and I’m trying to enjoy every moment with him even more than I did before. My relationship with God is even stronger and I know that our family will get through this together with God’s help! 

Again, thank you all for your continued prayers and support for our family! It means more than you'll ever know!

Updates: Losing our son: Part One


         For those of you that follow me on different social media accounts, you know that my husband and I lost our second son Jackson on September 29, 2015.  I kept a journal during the three week downhill spiral of the pregnancy. I am going to backtrack as I rewrite my journal during those three weeks into this blog post. I will also post a second post about the day I gave birth to Jackson. 

It’s insane as a mother (and parent) the extremes we would go to for our children. From the instant I found out that I was pregnant (each time), I was in LOVE with my child and get an overwhelming sense to do everything that I can to keep them safe!
This pregnancy has been hard from the beginning. We had a miscarriage two months prior to conceiving this miracle and while I was thrilled, I was also nervous to miscarry again (I don’t think that feeling will ever go away, no matter how many times I am pregnant). You don’t ever get over losing a child no matter when it happens. You get “on” with your life, but you NEVER forget! We miscarried due to me having low progesterone and didn’t catch it in time. The day I found out we were pregnant again, I went to the doctor immediately. We found out that I had low progesterone again but luckily caught it early enough that taking progesterone pills everyday fixed the problem. I was able to stop taking the pills after 12 weeks. I finally felt a little less nervous, but it didn’t fully go away.
At 19 weeks, our lives were turned upside down with the news that our sweet baby had non-immune hydrops fetalis.
Non-immune hydrops fetalis occurs when a disease or medical condition upsets the body's ability to manage fluid. There are three main causes for this type: heart or lung problems, severe anemia (e.g. from thalassemia or infections), and genetic or developmental problems.
The next day, I had the first procedure done called amniocentesis.
Amniocentesis is a prenatal test in which a small amount of amniotic fluid is removed from the sac surrounding the fetus for testing. The sample of amniotic fluid (less than one ounce) is removed through a fine needle inserted into the uterus through the abdomen, under ultrasound guidance. The fluid is then sent to a laboratory for analysis. Different tests can be performed on a sample of amniotic fluid, depending on the genetic risk and indication for the test.
One and a half weeks later, after multiple blood draws and ultrasounds, we had all of the results which all came back normal. Due to rapid blood flow in the baby’s brain, the only thing left was anemia and the only way to find out for sure was through a PUBS procedure.
Percutaneous umbilical cord blood sampling (PUBS) is a diagnostic procedure in which a doctor extracts a sample of fetal blood from the vein in the umbilical cord. This blood can be analyzed to detect chromosomal defects or other abnormalities.
At 21 weeks, we had our first PUBS procedure to confirm that our baby was severely anemic. I walked myself to the operating room and sat on a table. I had a full epidural and a partial spinal block. They gave me numbing medicine and some medicine to help me relax, but I was partially awake during the 2-hour procedure. I could hear the doctors but only truly remember towards the end. I didn’t feel too bad after the first procedure and was able to walk quickly after the numbness wore off from the epidural. I had six needle poke marks on my belly, a shot mark on my back from the spinal block and an epidural port left in my back to be used again the next day.
The next day, we had our 2nd PUBS procedure. Since they left the port in my back, they gave me the epidural in my room before taking me to the operating room. They checked the baby’s heartbeat and felt that it as low and made the doctors nervous which immediately made me scared and cry, but I knew that I had to be strong for my child to give him the best chance! They wheeled me to the OR and realized the epidural wasn’t working on my entire body, just on one side, and then decided to give me a full spinal block as well. They checked the baby’s heart rate and it was back to a good rate to proceed and I made sure they went to tell my husband so that he wouldn’t be as nervous as when they wheeled me out. They put me completely out for this procedure so I don’t remember much during the 2 hours. I remember waking up and being told they couldn’t transfuse due to Jackson’s heart rate dropping at the end. Since I had a full epidural and full spinal block, it took me longer to recover than the day before. My back remained sore all night. I had a few more needle pokes on my stomach, another shot mark on my back and a small hole from where the epidural port was on my back. It was a little rough to sleep that night, but I finally fell asleep and slept knowing that Jackson’s heart rate was good after being checked 3 more times that day.
The next day, we had our 3rd PUBS procedure. I again, walked myself to the OR and sat on the table. I saw all of the blood and platelets ready to go for our precious child and had a good feeling about the day. Since the epidural didn’t work the day before, they only gave me a full spinal block and calm down medicine.  I could hear the doctors during the 1 ½ hour procedure but really only remember the end. The spinal block started to wear off at the end and I could feel them sticking my stomach with a giant needle but they said they were almost done and that Jackson was doing great and transfusing him now. So, I didn’t ask for more medicine because they would have needed to stop. I could fully hear them and remember the last, what seemed like 15 or so minutes. I had six more needle poke marks on my stomach and a new shot mark on my back. I was able to walk 4 hours after the procedure and my body remained painfully sore for days after. Having all of that done to my body three days in a row really took a toll on me, more than I thought it would. The crazy part is that I would do it every single day to save my unborn son.
 It’s amazing the lengths a mother will go through for their child, and in our case there is no guarantee that our baby will even survive to birth or after. Termination is never an option for us (even thought we were strongly advised by many doctors). I have a stronger doctor on my side and know that God has a plan for our precious child and I will do everything that I can to fulfill His plan.  We will have to go through many PUBS procedures before this baby is born and know that he is very sick and if he survives and makes it through birth he will spend a lot of time in the NICU. It makes it even harder going through this while taking care and worrying about our older son. No matter what the outcome, I know as a mother that I’ve done everything possible to save my son. He is a perfect child of God and is already so loved by many!
My loving husband was by my side during this entire process. He never left my side except for one hour to meet our other son and grandma at the playground.  There is no way id be able to be strong for Jackson if Jon wasn’t strong for me! I’m sure he feels scared and not sure what to do, but him just being by my side makes all the difference in the world. He’s my rock and no matter what life throws at us, we will remain strong together! I didn’t think I could love him anymore than after getting married and having our first son, but I love him even more after all of this and our faith is stronger through this as well.
Psalm 139 13-16
 For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful,
I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.
Phillipians 4:13
I can do all things through Him who gives me strength.