Archive | April 2016

The “in between” Time

If you read my last post, you know a little about what was going on this time last year. If not, go back and check it out. I’ll wait. 
Ok. So now comes the interesting part. In three weeks, Little Miss Minion would be born. In that time, she would double her weight, get an inch taller, and have some impressive lung development that would shock the NICU team when she came out. 

There’s not a whole lot that is known about preeclampsia. Everyone knows that it’s high blood pressure and some people know that you have to have protein in your urine, but what do those two things really mean, on a practical level? There’s a theory that the issue is with the placenta. Maybe the blood vessels didn’t form right, maybe they are too thin, maybe there aren’t enough of them. This theory says that the baby realizes the issue, since it isn’t getting enough of what it needs through the damaged placenta, and sends a hormone to the mother that increases blood pressure, which in turn raises the amount of blood that should come through to baby. Except that the placenta is damaged on a microscopic level, so nothing changes for the baby, but the mother now has high blood pressure. Having high blood pressure causes many other problems, unrelated to pregnancy, but add another level of stress to a body that is already sustaining two lives. High blood pressure causes headaches, blurry vision, fatigue, swelling, and organ damage. It can eventually lead to seizures, and even death. 
There is another theory that involves hormones, but this time, it’s from the mother to the baby. If the mother or her body are under stress, she sends a hormone to the baby that speeds the development of vital organs like the heart, lungs, and brain. So if the mother has high blood pressure, for example, her brain knows that something is wrong and sends a hormone to the baby, in an attempt to get the baby as far developed as possible in case the baby comes early.

There isn’t enough research out there on preeclampsia to really know for sure if either or both of these are correct. However, I tend to agree with both theories, especially given my experience in going through preeclampsia and the premature birth of LMM. 

One Year Ago: How Quickly Things Change

One year ago today, I was on day two of a three day hospitalization for “brewing preeclampsia” and possible HELLP syndrome. I was 25 weeks pregnant. According to several very detailed ultrasounds, LMM weighed about 15 ounces. I received my first round of steroid shots, to speed her lung development in case they had to deliver her that day. 

One year ago yesterday started off pretty normally. I had done a round of bloodwork to check my thyroid levels again and to see if there was anything going on with some swelling, headaches, and slightly higher (for me) blood pressure readings of around 120/80 (normally was around 105/70). Around 2 pm, I got a call at work from my OB office. I snuck off to the hall to listen to the message, knowing it was probably the results of my bloodwork. When I heard my doctor’s voice on the message, I started swearing. My doctor never personally called me. Her nurse practitioner had always called. “Please give me a call about your blood test results.” I went back to my desk, since I was the only one there that day, and didn’t want the department to be unmanned. I called the office and got the nurse practitioner. She put me on hold while she grabbed my file and then came back on the line. “Ok, Mrs Minion, the doctor wants you to head to the hospital. Your bloodwork came back with some abnormal levels. You’ll come in the main entrance and then to the maternity welcome center. We’ve sent your file over already, so they will be waiting for you.” 

In shock, I went to my boss and told him that my doctor told me to go to the hospital. I grabbed my stuff and headed to the parking garage. I called Mr Minion as I walked, telling him that I was headed to the hospital. I made it to the maternity center and told them I was here. About five minutes later, Mr Minion walked in the door. The drive should have taken him about fifteen more minutes. 

Over the course of my hospital stay, I learned that my platelet levels, the part of your blood that makes clotting possible, were very low. My kidney levels and Uric acid levels were wrong too. My hemoglobin levels were also wrong. I had basically everything that makes up HELLP without the severity. My new high risk team also thought that I would probably end up with preeclampsia, which is high blood pressure and organ stress. They didn’t know if I would ever get officially diagnosed with it, since you have to meet several diagnostic criteria and I wasn’t technically meeting any of them. They didn’t know when it would happen, if it ever did. The hope was to get LMM and I to 37 weeks, the minimum threshold for full term. I would have weekly blood draws, weekly protein tests, and a high risk maternal fetal medicine team. I was under orders to take it easy, and I was able to keep working only because I have a desk job. 

I had no idea that my daughter would be born exactly three weeks after I was discharged. I had no idea that the following 84 days would be spent in a small room in the nicu, watching her learn to breathe, eat, struggle through infection, sepsis, meningitis, and hydrocephalus, watching her be wheeled away for brain surgery. I had no idea I would have to wait an entire day to hold my child, that I would have to wait for permission to hold her again. I didn’t know how enraged I would be to hear a pregnant woman bemoan her aching back and wish for an early baby. I had no idea of the level of jealousy I would feel with other people and their textbook pregnancies. 

I had no idea that I would be hooked up to an IV of magnesium, a substance that would keep me from having seizures due to sky high blood pressure, telling the nurses and the doctors that I would be fine, that we needed to wait because LMM wasn’t ready. I didn’t know that I would be waking up every three hours around the clock to pump instead of breastfeed. I didn’t know she would have four brain surgeries before the age of six months. I didnt know that any sound of beeping would trigger an adrenaline rush to get to my daughter’s side and stop the apnea or bradycardia episode in progress.

Without darkness, there can be no light. 

Slow and Steady

Little Miss Minion had her (almost) 12 month checkup this afternoon. She’s technically only 11 months, but close enough. She is now a whopping 16 pounds, 2.2 ounces, which is 8.6 times her birth weight, and 25 inches long. Her pediatrician said that she’s one of the happiest and social babies she sees, and that she’s very happy with her progress. She went over Little Miss Minion’s stats with me, as always, and she’s right on track. She’s on the regular growth chart now! Usually, we use the preemie growth chart because it adjusts for the slower growth and lower beginning weight of preemies, comparing them to each other instead of full term babies. But this time, we compared her to the chart for full term babies born on her birthday, and she’s at 6.6%! Her head circumference is perfect, which is good news for both brain development and hydrocephalus concerns. Stable head growth is good. 

Upcoming adventures include a March of Dimes walk in a couple of weeks, orthotics, and another neurosurgeon follow up and MRI. The March of Dimes walk will be her first real contact with The Public aka Germ Central. The good news is that the event is outside and the team I’m walking with is her NICU team, mostly nurses, who know all about Preemie Protocol. One of my coworkers and her husband are walking with us, plus my sister is coming! I’m touched that other people want to walk in support of LMM, and for all of the donations we’ve raised for the cause. 

Other than that, not too much else going on in the Minion household. 

Sunshine and Qdoba

It’s been another busy weekend at the Minion house, complete with a new milestone: our first time going out to eat as a family. We went to our local Qdoba,which has an outdoor dining space. We were the only people out there and there was plenty of purell involved. She slept through most of it, but we got a couple good pictures. It was very strange to have her outside, doing something normal.

On Saturday, we went for a walk. We need to figure out a better way to block her from the sunlight, since she seems to have inherited the pallor of her parents, plus she’s a baby. Although she does have more color than I do.

Today, we went to Mr Minion’s parents house for lunch. LMM had fun showing off her crawling and sitting skills, and got to see her great grandpa!

She has slept in her crib for three nights in a row!  This will help with her legs and feet, since she can stretch them out. Her orthotics fitting is in a couple weeks.

Other big things going this week: she’s got a pediatrician check up appointment, physical therapy, and being awesome. 

11 Months Old

It’s hard to believe that Little Miss Minion is already 11 months old. In the past couple of weeks, she’s said her first word (Mama), pulled herself up from sitting, started to crawl, and has tried lots of new foods. Current weight is 15 pounds, 8.6 ounces. She’s outgrowing most of her 3 month clothes and starting to fill in her 6 month outfits. In one month, we can start taking her places in public. We will still need to carefully monitor the germ situation, since her lungs are still catching up, but her immune system should be significantly stronger, although since she’s still just a baby, it still won’t be as strong as yours or mine. And it still won’t be caught up with her chronological age, but it will be strong enough that we can expose her, with extreme caution. Lots of Lysol and hand sanitizer, but she will be out in the world!

Almost April

Little Miss Minion said her first word tonight! Drumroll….it was “Mama.” So exciting. 

In other news, we are looking at getting orthotics for her feet. Due to her small areas of brain damage, she’s at a higher risk for hypertonia, or high muscle tone. Basically, this means that the muscles would be in the stretched position instead relaxed. She does this with her toes, so we want to get them fixed before she starts trying to walk on them. What will happen if we ignore it is that she will walk on her tiptoes. Right now, she stands up on her toes whenever we pull her to standing, and when she’s sitting down, her toes curl in frequently. 

The orthotics will be custom made, and will look kind of like shoes. They will stretch her foot muscles while she sleeps, allowing her to stand and walk normally. They are similar to the ones I wear for plantar fasciitis. When I manage to remember to wear mine, my feet always feel so much better, and I hope hers do too.

She’s getting one more Synagis shot, since rsv is pretty bad this year. I’ll have an updated weight on her then too. 

Other than that, not much to report. She’s rolling herself everywhere these days, and starting to get into everything at floor level. Time to start putting things up.