NF1 | Swanson Family Blog

Goldie’s Birth Story

Posted on October 21, 2021 by karalswanson

I love reading birth stories – every birth is so unique and unexpected! Goldie’s birth was definitely the most eventful of the three!

Eliza was breach and they tried an external version, but it didn’t work so they did a c-section at 39 weeks, 0 days.

With Oliver, I did a VBAC (vaginal birth after c-section). My water broke with no contractions going, so I went to the hospital and they started Pitocin. After about 2 hours of Pitocin my contractions were extremely painful (I remember feeling like I would do anything to try to escape the pain and feeling completely out of control). I remember the nurse coming in when my contractions were SO painful and she said she was going to turn the Pitocin up even more…I got an epidural around 10am and he was born at 7pm.

This time I was fully expecting to go into labor at 39 weeks since the last two babies were born early, but Goldie stayed in there a week longer! I was *really* hoping to go into labor before my water broke because I thought if I could labor at home for long enough, I could maybe have an unmedicated birth at the hospital. I knew that if I had to do Pitocin again I would want an epidural. I was trying all the tricks to get my body ready for labor including eating 6 dates a day, drinking raspberry leaf tea, etc. with the hope that contractions would start without my water breaking! I had sporadic contractions here and there but nothing consistent.

At 12:30am on Friday, October 15, I had just laid down in bed and I felt my water break. (Thursdays are our first “weekend” day since Seth has Fridays off so it is pretty normal for us to stay up until 11 or 12 on Thursday nights). I wasn’t having any contractions yet, but with a VBAC they want you at the hospital within the hour of your water breaking. I called my mom to come to our house to stay with the kids and we packed up the last few things we needed for our hospital bag. By the time we went to the hospital I started to have a few sporadic contractions that I could still talk through.

Seth had to wait in the waiting room while I went back to triage so they could assess if my water had really broken (it had…I got amniotic fluid ALL over the floor, bed, my clothes…it was everywhere). There was a spot to write how much amniotic fluid had come out on the board and my nurse just wrote “buckets.” Triage took forever (I’m not really sure why…but I was in the triage room for about an hour and a half while Seth was in the waiting room). I was dilated to 4 and about 70% effaced when I was admitted. Finally they took me to a room and got Seth from the waiting room at 2:30am.

I saw a group of midwives for this pregnancy and it was the BEST decision I could have made! Instead of making me start Pitocin right away when I was admitted, they let me labor on my own for about 4 hours. My contractions stayed relatively painless and about 8 minutes apart throughout the night. They were just often enough that I couldn’t sleep but didn’t really pick up in intensity or frequency. Seth was able to sleep on the side bed for a couple of hours.

At 6am the anesthesiologist came in and asked if I had NF1 and if I had a recent spine MRI. I’ve never had a spine MRI because my NF1 diagnosis was done genetically after the birth of both Eliza and Oliver. She explained that pregnancy hormones can cause (benign) tumors to form inside the spinal column and they always want a recent spine MRI before placing an epidural to make sure they don’t cause bleeding inside the spine. If they were to accidentally hit a fibroma it could bleed and cause permanent paralysis. She said I was not a candidate for an epidural and if they needed to do a c-section, it would be under general anesthesia.

I was already hoping to do the birth without an epidural but ALSO without pitocin. At 6:30am the midwife came in and was very apologetic that my chart had never been flagged for needing an MRI ahead of time – NF1 is so rare and my diagnosis was added after the last two pregnancies so it didn’t raise any flags. It was definitely not any person’s fault because I had seen 6 different providers during my prenatal care including an OB for signing consent forms for a VBAC. My midwife also said they really needed to start Pitocin to get my contractions closer together. She was SO encouraging and said they would start at the lowest possible dose and turn it off as soon as my body took over. She said to let them know if I felt like my body couldn’t handle the Pitocin anymore.

Once they hooked up the Pitocin, my contractions got more intense and were consistently about 4 minutes apart. I was able to sit on the yoga ball and lean on the side of the bed during contractions. I had a lot of back labor and Seth pushed really hard on my back during contractions which made a massive difference. The contractions were intense, but I was able to breathe through them pretty easily. My main nurse was also extremely supportive and gave me lots of tips for managing contractions.

At 8am my nurse said the baby’s heart rate seemed to be dropping during contractions so either there was a positioning issue with baby’s cord OR she had dropped lower and was almost ready for pushing. I thought there was absolutely NO way the baby was ready for pushing because my contractions were still 3-4 minutes apart and I still felt really in control of everything – so different than I felt with Oliver’s birth!

My midwife came in to check and said I was 8cm dilated and 95% effaced so to just let them know when I felt like my body was ready to push! I couldn’t believe it! It gave me so much encouragement that I could be so close! My nurse suggested moving to my hands and knees on the bed so Seth could push on my back more easily for contractions. The contractions picked up even more and got way more intense. Seth thought I looked like I was ready to push and asked me and I whispered “yes.” Thankfully he notified everyone else that I was ready because baby came FAST after that! They moved me to my side and she was out in only 4 pushes! This was the only time during the labor where I was kind of yelling but I still never felt like the pain overwhelmed me at any point!

They lifted Goldie onto my chest and let her stay there for about an hour while they delivered the placenta and stored the cord blood since we chose to bank it. I had some really minor tearing so the midwife did a couple stitches (again SO different than the 22 stitches I had with Oliver and the c-section with Eliza!). We were able to be discharged 24 hours later!

This recovery has been the quickest of all 3 births and I think a lot of it had to do with how quickly she came and that my body was really ready to go into labor when I got to the hospital. I’ve given birth by c-section, VBAC with an epidural, and now VBAC without an epidural and the hardest recovery for me personally was the VBAC with the epidural. I’m realizing everyone’ s birth and postpartum experiences are so different and even all 3 of mine were so different. It makes a huge difference to feel heard and supported by your care team!

No matter how babies are born, they are such a gift. Welcome to the world Goldie! We’re so glad you are here!

Update on Oliver: July 1, 2020

Posted on July 1, 2020 by karalswanson

I’ve hesitated whether or not to write a post with an update on Oliver since there isn’t really anything “new” to update and things can change so quickly, BUT I’ve also had pretty close friends and family ask what is going on with Oliver right now so I’m going to write a quick summary and update!

Oliver had his bone marrow transplant December 22, 2018 (about a year and a half ago). He has done really well since then, but in October, 2019 Oliver’s labs showed that his donor bone marrow cells were going away and his old cells were coming back. Almost always with JMML or a transplant, old cells coming back means the cancer is coming back…except that isn’t what has happened with Oliver. They tried to give him “boosts” of his transplant cells to try to save the transplant, but it didn’t work. At his last check, he only had 16% of transplant cells left.

Oliver wasn’t allowed to touch sand/dirt/ocean for a year after transplant. He LOVES getting to dig his toes in the sand now.

Somehow his old cells seem to be coming back with no sign of cancer. Our doctors have told us they know of 3 other cases where this has happened – the child had old cells take over the transplant and they didn’t have cancer come back. My mind can’t fathom how rare Oliver’s case is. His type of cancer already only occurs in 1 in 1 million kids…and then to have this happen is even more rare.

He is currently getting monthly lab draws and bone marrow biopsies every 3 months. When they do the bone marrow biopsies, they send the cells to UCSF in San Francisco, California for genetic analysis to check for any cancer mutations. Our doctors tell us the longer he goes without the cancer coming back, the more likely it is that it will not come back. So far his monthly labs have looked normal.

Unfortunately, because Oliver had a transplant, he is at a much higher risk of other types of leukemia and other cancers down the road. He will need regular monitoring for his whole life. If Oliver did show any sign of relapse, he would immediately head in to a second transplant.

It is such a strange place to be in…Oliver seems just like a “normal kid” right now for the most part, but we always have this shadow hanging over our heads. He only takes 1 medicine to help protect him against viruses.

Oliver and Eliza have such a special relationship

Oliver did really well through all of transplant. I follow two other children who got bone marrow transplants at Seattle Children’s right around the same time as Oliver and BOTH kids had inpatient stays this past week from massive complications from transplant. I am fully, fully aware of the huge blessing it is to have Oliver home in Bellingham with us.

We just try to live each day praising God for the gift of Oliver and hoping for the best while knowing life on Earth is often broken and imperfect. Of course I worry about Oliver – are the bruises on his legs normal toddler bruises or something else? Is he napping longer than a normal toddler? Is he eating enough? Is he eating healthy enough? Most of the time I’m able to put these thoughts away and just be thankful for Oliver. We are SO incredibly thankful that Oliver is pain-free, nearly medicine-free, tube-free, and full of so much life.

One question we get asked every so often is if Oliver is immune-compromised. He is and he isn’t…the common cold shouldn’t be deadly to him anymore like it could have been right after transplant, BUT cells do weird things sometimes after transplant and we are never 100% sure if his immune system is totally functioning normally. We still try to be fairly careful with germs (and so many other people are now too with COVID!).

We are so thankful for everyone who has faithfully prayed for Oliver and our family! I wish I could express my gratitude in a better way but I don’t know what else to say other than thank you!