Wednesday, February 28, 2018

Preparing for Stafford: Your Questions

Over the past few months I have received several messages and questions about preparing for Stafford from readers and friends who live far away. People have been wondering what they can do to help if they don't live nearby.

I thought there might be more questions, so I asked on Instagram and Facebook what questions you might have about preparing for Stafford, dysautonomia and pregnancy, etc, and y’all came up with a lot of questions! Today I am here to answer them. This will be lengthy, but feel free to skip over any question you aren’t interested in.

If you missed any of the other posts in the Preparing for Stafford series, you can find them here:

Preparing for Stafford: Your Questions

How do doctors handle labor and delivery when someone has dysautonomia?

It varies a lot from one doctor to another and from one patient to another. Some doctors are nervous about it; others are ready to take on the challenge. Some women with dysautonomia do well during pregnancy; others get worse during pregnancy. One doctor told me that some women with dysautonomia choose to have a C-section because it won’t require the physical exertion of labor. Other women want to do things as naturally as possible. If heart rate, blood pressure, and other symptoms are under control, from what I have heard, doctors will let a woman go through labor. However, they will probably monitor her more closely.

I don’t know many more specifics about how doctors handle labor and delivery with their dysautonomia patients, but I can share some from my personal experience. I have lived in a different place with each birth, so I had a different practitioner each time, and each one went about things a little differently.

I went to a Certified Nurse Midwife with William. She delivered in a hospital, and she worked closely with an OB and a high-risk OB, so I was very comfortable with the situation. When I had William I wanted to avoid all medications and interventions if possible because I didn’t know how my body would respond. I especially wanted to avoid an epidural because it can lower blood pressure, and mine was already low. 

After laboring through the night and all day long, I was so sleepy and fatigued that I couldn’t continue. The only options were to either get an epidural and take a nap or have a C-section. I opted for the epidural. I was also given Pitocin to help my uterus contract better. I’ve always wondered if it wasn’t contracting well because of my dysautonomia, but we really don’t know. Once the epidural kicked in, I took a nap, and just a few hours later William was born. It was tiring, but it all went very smoothly, and I didn’t have any complications with the epidural or Pitocin.

I went to an OB with Adelaide. The doctor referred me for a consult with a Maternal Fetal Medicine specialist just in case, but after the MFM specialist gave her okay, I was allowed to stay with my OB for the remainder of my care. My OB also had me go for a consult with anesthesiology a month before my due date. She wanted them to be familiar with my illness before I went into labor.

My OB and I had planned to induce so that I could go into labor after a full night of sleep. We wanted to avoid the sleepless night that I’d had during my first delivery in order to help relieve some of the intense fatigue I experienced that time. However, Adelaide grew so big so fast that I had to have a C-section. The delivery and recovery went well. 

The first OB I went to when I was pregnant with Stafford was very uncomfortable with my dysautonomia. Having a doctor who was so nervous about my health conditions was unsettling, so I found a new OB. She is the sweetest doctor, and she gladly takes high-risk patients. She did refer me to a Maternal Fetal Medicine specialist just to make sure it was okay for me to stay in her care. We received the okay from MFM, so I have continued in the care of this OB who has an interest in high-risk cases.

She is being extra cautious with me because of my age, dysautonomia, and Ehlers-Danlos Syndrome. The nice part about this is that I get to have a lot of ultrasounds! It is fun to have a peek into the womb every few weeks. If I feel well enough, I would like to try for a VBAC, but because of my age, a prior C-section, big babies, and EDS, it would be risky. My doctor is willing to let me take this risk, but I would be monitored closely throughout labor. 

Because it is risky for me to go into labor, I will need to go stay in a hotel close to the hospital when my due date gets close. I live a couple of hours away from the hospital, and it could be dangerous for me to be in labor on a long drive to the hospital since doctors wouldn't be nearby to intervene if needed.

I will likely end up having a C-section with Stafford. I can’t be induced because of EDS and my prior C-section. If my pregnancy goes past 40 weeks, Stafford will probably be so big that I would have to have a C-section anyway. My body may be tired, but it sure can grow big babies! I have been praying that if a VBAC is best for Stafford and me that I will go into labor early. And if I don’t, then I will trust that a C-section is the safest option for us.

Is your recovery time longer after childbirth?

Based on what I have seen and heard from other moms, it does take me significantly longer to recover from the lingering pain and exhaustion of childbirth. After William was born I couldn’t even get out of bed to pick him up or change his diaper. When Will wasn’t in the room, I had to call a nurse if William needed care. 

I had a C-section with Adelaide, and that made the initial exhaustion less than if I had gone through labor. However, the physical toll of taking care of a newborn soon tired me out anyway.

How will you deal with a newborn baby feeding all night long while having chronic illness? Will you bottle feed so others can help with that? 

We have always had to primarily bottle feed in the past. Based on my past experience, we will most likely be doing some bottle feeding early on, and we will probably have to switch to exclusive bottle feeding sometime in the first few months. 

When we had William, Will and I took turns feeding him at night. When we had Adelaide, I was only able to do night time feedings for the first two weeks. After that, Will did all of the midnight feedings.

Who is in your support team? You’ve mentioned you’ll be handing Stafford to others to care for. Do you get paid help or family/friends or a combination of both?

I will take care of Stafford as much as I possibly can, but I know that I will need significant help from others. We won’t have paid help, but we have received offers of help from friends and from our church. Our family will also be helping as they are able. Most of our extended family lives far away, so family help will be limited, but it will be there too. 

My parents will be coming up to help out for a while before and after Stafford arrives. They will also come to take care of the children and me while Will has to be gone for a week for the on-campus portion of law school this semester.

When we don’t have family living with us to help, local friends and our church family will be helping with meals and in-home care.

Do Will, William, and Adelaide have a good support system?

They do. We are pretty close as a family, and we talk to each other and support each other a lot. Our children will probably be more open with Will and me than they are with others, but they do have other friends and homes they can go to for an escape from the stress of severe illness if they need to. They also have a good school and amazing teachers, and they enjoy their time at school each week.

Will's dad and stepmom live nearby. Will has a very kind and understanding boss, and we are grateful for that. Our pastor also checks in with Will regularly to see how he is doing and if there is anything we need.

Preparing for Stafford: Your Questions

In terms of needing help, are there any options for people with disabilities, who have a child, for in-home help? What does your level of disability have to be? Or is there an option for subsidized daycare for someone with a disability?

As far as I know, there isn’t any help like this in my area. Anytime I have looked into it, both parents had to be working, or looking for work, in order to qualify for childcare assistance. Unfortunately, being disabled and unable to work does not qualify a parent for childcare assistance.

It sounds like you’ve let your church know, and your close friends know, what you need. I’d be curious to know what those things were that you asked for.

Back in September we told our church that we had a baby on the way. We also told a few people how hard life was now that Will had started law school. He was struggling to keep up with full-time work, school, and taking care of his family. It was impossible for him to do all that needed to be done. One of the deaconesses came to me and asked me to send her an email to let her know what we needed. I sent two long emails. The first email detailed what kind of help we needed right away. 

The needs that I mentioned in that first email were:
  • Help with yard work
  • Meals once or twice a week
  • Someone to go grocery shopping for us
  • Someone to take me for short errands in town
  • Help with house cleaning
  • Baby items (I had given away all of our baby items except for the few I kept for sentimental reasons.)

The second email gave details about my health, what a crash is like for me, what happened after William and Adelaide were born, and what kind of help I would likely need after Stafford is born.

The specific needs I mentioned in the second email were all of the same needs from the first email, plus:
  • Women to come into my home to take care of both Stafford and me while Will is at work
  • Help with nighttime feedings 

I also mentioned that I will not be able to have visitors after Stafford is born, and I explained that I will need to have a lot of quiet when people are here to help. 

I forgot to mention in my emails that we need to do all we can to avoid colds and other viruses, but this is something I have told many people since then. If someone has a runny nose or cough, we kindly ask that they not come into our home to help. We have had a baby with RSV and whooping cough, and it was hard to go through that. It would be even harder now that my health has declined more, but it isn’t just the “big” things we need to avoid. We also need to avoid simple cold viruses. What is a slight cold for a healthy person can cause me weeks of extra fatigue and weakness as my body puts energy toward fighting off the cold.

I wasn’t quite as specific with a list of needs when talking with my friends. Most of these things came up naturally as we were talking. I did share details about what is likely going to happen sometime in the months after Stafford is born. I didn’t live in Minnesota when either William or Adelaide were born, so my friends here have never seen me at my worst. It was important that I let them know ahead of time what was likely coming in the next year. 

I didn’t even have to ask my two closest friends for help; they just offered. And they gave specific offers of help, which is always great because then I don’t have to wonder, “What do they want to do? What should I ask? What is too much?” These friends just poured out their love and shared what they could do for me. They also expressed that they wanted to do these things, which helped me to not feel like a burden to them, but to feel like a valued friend.

What are some things that I could do, or that someone else who doesn't live nearby can do? Are there tangible ways from far away for us to help? Are there gift cards we can send for restaurants with take-out near you? 

These are questions I have received a lot in the past couple of months from blog readers and friends who live far away. You all are so kind to want to help. I do not want anyone to feel like they have to help simply because they read my blog. Please know that you are under no obligation! But since so many of you have asked about this, and have even asked specifically about gift cards, I feel like I should answer this question too.

Here are some ways you can help if you live far away:
  • Pray for us. Many of you have already told me that you are praying for us regularly, and we appreciate that so much! Thank you! If you would like to know specific prayer requests, I mention several of them in this blog post.
  • Send encouraging notes and messages. Many of you already do this as well! Thank you! I am always grateful for encouragement that comes through your emails, Facebook messages, snail mail cards, Facebook and Instagram comments, and blog comments.
  • Share an uplifting song. Some of my favorite songs have come from friends far away who send a link to a YouTube video. These songs have encouraged me on my hard days.
  • Sending a gift card if you feel so led. But please do not feel obligated. I wouldn’t have mentioned this if you hadn’t asked. In fact, I wouldn’t have even thought of this if this hadn’t been asked about so specifically! But you are right that gift cards to local restaurants for take-out would be helpful for us. We do have two meals a week that are provided by our church. Even now it is helpful to buy an additional meal from a local restaurant when Will doesn’t have time to prepare supper for us. And I'm sure it is only going to get harder for Will to have the time and energy to prepare meals for our family after Stafford is born. There aren’t many restaurant options for us, but nearby we do have Pizza Ranch, Casey’s General Store, and Subway. If you want to send a gift card, you can send an e-gift card to
  • Your ideas could be helpful too! Often the best help and encouragement comes from someone who sees a need or has an idea, and then does that. So if there is a way you would like to give support or encouragement, that may be just what we need and don’t even know it!

Preparing for Stafford: Your Questions
The Lego Lundys 
by William and Adelaide

Thank you so much, friends, for caring about our family. Thank you for praying for us and for rejoicing with us in the gift of Stafford! I look forward to introducing you to him sometime next month!

No comments:

Related Posts Plugin for WordPress, Blogger...