Special Needs Spotlight || Piper Grace

I’m Meghan and my husband Ross and I live in Massachusetts and are parents to Piper Grace who was born 13 weeks early and is now 6 months old. We also have two dogs who were our babies before Piper came along. I am a Speech-Language Pathologist, though I am currently not working to be home with Pipes. I’m a Texan/Californian who moved to Massachusetts for graduate school, met Ross, and never left (and after last winter that means it’s true love!) Thank you so much for including our story in this spotlight!

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Miggy: Hi Meghan! Thank you so much for being here today and sharing your NICU journey with us today. Your daughter was born premature–3 months early–and while she is only 6 months old now (yay baby girl!)  and you don’t yet know how her premature status will affect her in the months and years to come, you did spend 95 days in the NICU with her and that is quite a story on it’s own. Lets start at the beginning, at what point did you realize your baby was going to be born very prematurely and can you tell us about that day? What was her birth like? How did you feel? Can you compare your feeling then, to how you feel now?

Meghan: This was my first pregnancy so I didn’t know exactly what to expect. I was pretty healthy aside from a little morning sickness right up to and including my doctors appointment at 26 weeks where my blood pressure was perfect. A few days later Ross and I had planned a weekend outing to the Berkshires and I was feeling very ill. I had a terrible headache and just felt “not ok”. We stopped at a small hospital on our way and found my blood pressure to be 206/117 (normal is about 120/80). They gave me morphine to dull the headache and magnesium sulfate to reduce my risk of seizure from the high pressures. They then transferred me back to a hospital closer to home, where I had initially chosen to deliver anyway, but which also has one of the highest performing NICUs in the world.  At this point I still thought that my pressure would get under control and at worst we just missed a fun weekend and maybe I was looking at some bed rest. The doctors tried every medication possible to get my pressure under control but nothing would keep it down for long. I remember a doctor sitting in my hospital room saying “you aren’t leaving this room pregnant, we just can’t say when that will be.” That’s when it hit home. That’s also when the team decided to begin inducing labor because my pressures were no longer safe. We tried induction for an additional 3 days before my lungs began to fill with fluid and I began to have clonus in my legs, a sign of impending seizures. So at 2am Piper Grace came into the world by C-Section. She was 2 pounds and 12.5 inches long. The surgery was intense and awful.  The doctor who delivered her said it was the most grueling in his 30 years of practice.  Apparently my uterus clamped down around her tiny body when the waters were removed. I ended up with a T shaped scar on my uterus because they had to keep cutting to get her out.  Her back was very bruised after this and the OB was convinced he had broken her tiny arm, but nothing showed in an x-ray. The most awful part of the delivery was the silence when she was delivered and the doctor looking around the curtain, he was white and sweating and just said “It doesn’t look good.” I thought I was going to crumble right then. Thankfully my husband was sitting beside me being very strong. Then, about 20 minutes later they rolled Piper by me in an incubator as my surgery was being completed. The NICU team said she only needed to be intubated for 12 minutes to get surfactant to open her lungs, but now she was breathing on her own. I was immediately calmed and in awe of her strength. I later learned her first APGAR score was 0–no signs of life. Piper was then wisked away to the NICU and I focused on enduring the rest of my C-Section since my spinal block had worn off and I could feel every stitch and staple. I was stunned and in pain during the experience and have a great deal of left over trauma (similar to PTSD) from her birth. It’s difficult to speak about the delivery without reliving it.

Miggy: So your daughter is born and she is in the NICU, now what? How did those first few days and weeks play out? How quickly did you realize that this was not going to be a short stay?

Meghan: As they tell you in the NICU, it’s a roller coaster. Nothing could be more true. While the first couple weeks were scary, Piper had a bit of a honeymoon where everything was going well and she was tolerating all her medications and they started giving her drops of breastmilk through her feeding tube to prep her gut for feedings, though at this point she was getting all nutrition intravenously. Since she was a 27 weeker we knew that we would be in the NICU until around her original due date (13 weeks after she was born). I was in the hospital for 4 days recovering from surgery so I could be wheeled up one floor to visit her, which brought a little relief from my fear and sadness but I also desperately wanted to be home with my husband and dogs and in my own bed. I first held her when she was 4 days old and it was perfect. It made leaving the hospital without her a little easier. I want to also mention that a local rotary club set up webcams (NICView) at each isolette and a system for parents to log in and see their babies from home. I cannot express how much this helped. I could call at 2am when I was in tears missing her and they would turn the camera on her and I felt a bit better. I cannot imagine a NICU stay without that system.

Miggy: Can you walk us through a typical day when your child is in the NICU? Did you have other children to care for at home? Jobs to balance? Were you able to come everyday?

Meghan: My husband took about a month off (unpaid) then went back half days until Piper came home from the hospital. My contract with the school where I worked ended at the end of the school year in June so I was luckily not torn between the NICU and work. A typical day at the NICU looked like this: wake up around 6:30 and pump (I pumped about every 2 hours at this point). Then call the NICU after shift change at 7am to see how her night was and who her nurse for the day would be. During this report I would ask her current weight (measured in grams) and how many bradycardia/apnea episodes she had overnight. I would generally try to make the 25 minute drive to the NICU around 8 am so I could be part of her morning feed (NG tube feeds in the first month or so then bottle/breast feeds). I would participate in all care including diaper changes, taking her temperature, etc. In the early days I would do hour long kangaroo care sessions where I held her skin to skin, and in the later days I would hold her until I went down to the cafeteria for lunch. One of the hardest parts of having a baby in the NICU is having to ask “permission”to hold your own child. After a quick lunch I would return to her bedside and either participate in rounds (where the doctors, students, and specialists meet and discuss the progress of each baby in the previous 24 hours) or feed her again.  After 5-6 hours in the NICU I was pretty much emotionally and physically drained (I was still recovering from a C-section and also had 3 kidney stone surgeries when she was in the NICU). My husband usually visited in the evenings and I would often join him. Though some days I needed to rest at home, which definitely caused the mom-guilt to rise up.

Miggy: Could you talk a little about what it was like emotionally to have a baby in the NICU? Was it a rollercoaster of emotions, did you and your spouse/partner cope well, did you find ways to cope? What was the hardest? Was there anything surprisingly pleasant?

Meghan: A rollercoaster is the absolute perfect way to describe the NICU. Babies tend to have a “honeymoon” period the first week or two after birth like Piper did. She did fantastic, needed minimal support, and generally tolerated everything well. The only hard thing in those early days was that micro-preemies drop weight after birth like any other baby so we watched her go from 2 pounds to 1 pound 8 ounces. After that time period she began to have more episodes of apnea and bradycardia. Basically her heart rate would drop and she would hold her breath. Sometimes she would turn blue then gray and limp and need to be “bagged” ( a few rescue breaths of oxygen with a mask and bag). Those were the worst episodes to witness and honestly once you see your child that way you can never get it out of your mind. It’s hard for me to convey the emotional difficulty of having a child in peril for 3 months. It feels like a constant state of heightened adrenaline. You are never really able to relax. We were always wondering when the next episode would happen, if a head ultrasound would show bleeding, if bloodwork would show something negative. Ross and I handled it differently and often found that we couldn’t be the rock the other needed at all times. It’s a really difficult thing to do as a couple, but in the end I feel like we are stronger and closer for this experience. We learned so much about each other because we chose to work through the issues that came up rather than ignore them. I don’t know if anything about the NICU is particularly pleasant, but I did enjoy the relationships we forged with the NICU doctors and nurses and one other family in particular.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Meghan: Piper is still on a pulse oximeter/heart rate monitor when she sleeps. It tells us that her oxygen levels and heart rate are ok during the night and naps (girlfriend sleeps 13 hours at night!) The sensor and cord are on her foot 24/7 then we just plug the cord into the monitor in her room.  We were at a Christmas party for Ross’s work and one of his coworkers asked if that was something we used to keep her warm.  Like we would plug in her cord and she had a tiny heating pad wrapped around her.  We had to laugh at that one.

Miggy: Sometimes friends and relatives don’t know what to do when someone is going through a situation like this. Can you give us some advice about appropriate and positive ways people can help when someone you love has a child in the NICU for a prolonged period of time? Is there something you wish other people knew so as to avoid awkward or hurtful comments or situations?  

Meghan: I know everyone is different when it comes to these things. Some moms don’t like when people comment on how tiny their baby is. But when Piper was 1 pound 8 ounces she WAS tiny. I didn’t mind those comments because it acknowledged the situation we were in.  Plus people usually followed it with “and she’s so cute.” I would suggest not comparing anything in your life to the life of a NICU parent. I know it is human nature to want to compare but saying things like “I know how hard it is for you to leave her every day because I miss my kids so much when they are at daycare” is a silly comparison. I would recommend an alternate like “I miss my kids when they are at daycare so I can’t even imagine what leaving her nightly is like for you.” It lets you try to sympathize without suggesting you know what it’s like. I also recommend not talking about future children. You may think it wouldn’t be a time people would bring that up but they do. I had a very traumatic delivery and feel as if future pregnancies are too much of a gamble, which is really sad for me. Other women may have had a traumatic delivery and hysterectomy and may be dealing with that. Lastly in terms of comments, I recommend not asking why a baby is early. There are many reasons that babies are born prematurely and in general, unless you are really close to someone, those reasons are none of your business.  (And if you are close to the family you already probably know the story). There are some great ways you can help people when they are enduring an extended NICU stay: 1. Understand that they might not know what to ask for.  My sister in law was great about saying “I’m bringing by dinner this week, you choose the day.” and she would drop dinner with no expectation of socializing. It was a huge help and we really missed home cooked meals.  2. Our daughter’s total NICU bill was roughly $1.1 million.  Much of this is covered by insurance but there are things that are not, like my husband taking that month off (his employer was unfortunately not very supportive of our situation). We set up a GoFundMe site and received very generous gifts through that which allowed us to be with our daughter when she most needed it. 3. Come to the NICU and let us show off our baby. We love showing off our baby like any other parents so if you can put the NICU scariness aside and visit it’s great.

Miggy: What is the biggest lesson you’ve learned since becoming Piper Grace’s mom?

Meghan: The biggest thing I’ve learned is to be grateful. We became friendly with a couple in the NICU whose son ended up passing at 4.5 months old. We take nothing for granted. There are days when motherhood is very difficult, as it is for any new mom, but I try to look at the bigger picture. We work on gratitude in our family daily and we credit Piper (and her angel friend) with this perspective. My daughter went through heel sticks multiple times a day, PICC lines, IVs, NG tubes, respiratory assistance, and so much more. I’m pretty sure if she can do all that then I can get through a my day without too much complaining.

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Meghan thank you so much for sharing this journey with us today! On a personal note this was perfect timing as I have a friend who is just embarking on this journey (again) and it was really good for me to read this and have a little idea of what they are going through and what lies ahead. This is really helpful for those of us who haven’t been in this situation to understand just how hard it can be and exactly what that rollercoaster looks like day-to-day. I appreciate your honesty with things like PTSD after childbirth–it’s so important for people to hear and be aware that it is a real thing that can have real ramifications in a woman’s life. Thank you for sharing an experience that was so difficult to revisit. And lastly, gratitude. What a wonderful blessing to have learned. I truly believe gratitude changes everything. 

Thank you lovely readers for sharing and reading another special needs spotlight. I always appreciate your continued love and support. If you or someone you know would make a great special needs spotlight please email me at thislittlemiggy at gmail dot com! I’d love to hear and share your story!

Have a great weekend. 

And Happy Valentines Day.

XO

Miggy