Tuesday, September 30, 2014
Top Notch Care
Day 6 - Passed!
Off to nap now
I was also insanely spoiled today by two girlfriends (Ellen and Sarah) who visited with gifts and food and laughter. That fills my tank up so much, it's hard to describe how good it feels after a good friend visits.
Baby Steps
I woke up this morning and for the first time in 6 days, I did not cry! When first waking up this last week, reality hits and before my brain can even process that I'm awake, my body seems to respond on its own and I've woken up basically sobbing, sometimes with anxiety and fear.
Today I woke up, my normal time (5:30 for those night owls) and not one tear. I got up to go to the bathroom, laid down and was able to lie still in the darkness without the emotional flood forcing it's way out of me.
That's a small victory today. It starts my day off in a way that shows me I'm strong enough to do this.
I know it must feel silly to those who have never been on bedrest. Like I'm making a big deal out of something that should be easy. This is the most terrifying and awful thing Greg and I have ever been through, without a doubt. We are strong enough and we have our family, faith and love to get through it. Noah is worth this and so much more. But it's crazy hard.
This morning is a victory.
Monday, September 29, 2014
Thankfulness
Tonight, I got to Skype with Greg and Grace and just being able to 'be' there was amazing. Grace is really good at Skyping since we do it with Greg when he travels for work. I was able to get virtual kisses and snuggles as well as act silly and just have FUN together. It really felt like I was right there with them for a minute. I even got to talk to Max the cat. I miss them so much but this made it almost okay. And it was nice to talk to Greg face to face without one of us having to make sure Grace wasn't getting into something she shouldn't, like my IV line or playing with my bed. :) She was there, in our home, where she is comfy and calm. AND, all the parents out there will appreciate this, she'll get to bed on time tonight with her normal routine. Did I mention I got to stare at my husband for a minute? :) God, I love that man.
I'm extremely thankful for Skype.
I'm also thankful for the nurse I had today - Cindy - who made it a point to touch my shoulder or brush the hair from my face. What a difference those small touches made this morning. Nurses are a special kind of angel, especially those who take care of you physically, emotionally and mentally.
I'm thankful for my church family, who I was able to chat with today through a Facebook group we are part of. They offered love, support and some daily bread. I know I'll lean on them over the next few months for spiritual support and they're a strong group of women with open hearts and wide open arms.
I'm thankful for Liz and the awesome Kopps lunch she brought, with a milk shake! And her company. I felt so centered when she left and almost NORMAL for a minute. I really felt like me again.
And of course, I'm most thankful that Noah is still an inside baby. Grow little man, grow!
Let's Break It Down
I'm 27 weeks, 3 days pregnant with Noah and early on in the pregnancy he was diagnosed as Asymmetrical Severe Intrauterine Growth Restricted.
Let me break that down further - IUGR means less than 10th percentile for growth. Severe means less than 5th. Asymmetrical means that his head is measuring larger than his abdomen, which is actually BETTER for his long term survival because it means his brain is getting most of the nutrients. I can come back to this later this week when I research it more.
They don't always know what causes IUGR. Sometimes it's chromosomal abnormalities that cause this. We had blood work that extrapolated my DNA and the baby's DNA, as well as met with geneticists and all of that came back clear. I had tests to rule out viral infections, my blood pressure has been stable and I don't have any other health issues that were red flags. Noah has no markers or indicators that he has Down's Syndrome or any other noticeable birth defects. His lungs, heart, brain and all other organs are functioning and have no discernible abnormalities or cysts.
Sometimes babies are just small. We thought this was the case with us because we had no other indicators that anything was REALLY wrong. Grace was small - born 38 weeks and measured 36. For weeks, he was growing, albeit slowly, and there were no"ah ha" moments. Last week Thursday, I went in for my weekly ultrasound and growth scan and it was determined that the blood flow to my placenta is actually decreasing or absent at times. This was our "ah ha" moment. And total "oh shit" moment at the same time. I had an hour to pack a bag and get to Aurora Sinai in Milwaukee, where I've moved in to a long-term stay bed and will be here for as long as God allows Noah to stay inside and grow.
Daily, I am monitored in a few different ways. The first 48 hours, I was giving steroid injections and Magnesium Sulfate to boost vital organ function and reduce the risk of preterm labor and Cerebral Palsy. I was on IV fluids and had 24/7 belly band testing, as well as oxygen, a blood pressure cuff and pulse ox on my finger. I was locked, loaded and stuck in bed. :)
Today, I am down to the daily ultrasounds, meeting with both my doctors and the maternal fetal medicine team and I have non-stress test (belly bands) every 4-6 hours. Today I got my IV line out and am no longer hooked up to any machines continuously. Great news!
Every day, when they do the ultrasound, Noah is scored on a Biophysical Feedback Scale of 1 to 8. The lowest we have gotten is a 6 and he typically gets 8 out of 8. If he drops below a 6, our risks are elevated. So each day, I look forward to the ultrasound and dread it at the same time. I'm sure it will get more routine and less scary, but that's when the what-ifs start to creep in. He will probably need oxygen and a feeding tube. The odds that he'll be more than 2 or 3 pounds are slight, but I'm doing all I can to bulk him up. He's coming in at 1 pound, 6 ounces right now. I was born at 29 weeks, 2 pounds, 11 ounces. I've already challenged him to beat that and I know he's working on it. :) He is our little fighter, ya know.
Our prognosis is this:
I will not be going home. The situation is serious enough that I must be here 24/7.
If everything stays EXACTLY like it is today, we have a fighting chance to make it to 34 weeks. It's not likely but it can happen!
If he drops to daily scores of 6/8, we will deliver at 31 or 32 weeks. This is realistic.
If something happens, we deliver immediately.
Noah will be a preemie. He will be in the NICU but we will not know the extent or how long until he makes his grand appearance. Our journey truly has just begun.
I have a strong faith that God put many wonderful, amazing blessings in place so that when we reached this fork in our journey, we would have the village and the strength to make it through. When I focus on His love and His plan, I am strong and able. There are times when I am beaten down, but this is a marathon, not a sprint and I know we will make it through, no matter what.
If you have questions, please let me know! All of this is in my head, so I just assume at times you're all inside there too and know what's what.
Again, your support means the world. You are keeping us strong and sane. Love you!
Doctor Gracie Is In The House!
On Mondays We Rest
Happy Monday!
I didn't get to sleep until around 12:30 last night after my last round of belly bands and vitals. Woke up at 6am when the MFM Doctor came through on her rounds and promptly fell asleep until 8 am!! Wahoo!
Had our daily ultrasound right away this morning, Noah scored an 8/8!!! I'll try to break down all of these testings and whatnot in a post later for everyone.
I'm on the monitors now and once the MFM comes in for our daily chat, I'm planning on showering and then sleeping some more. Might as well actually rest while on bed rest, right? ;)
Sunday, September 28, 2014
Noah Needs Me More
We were able to get in a lot of snuggles tonight - we walked around the hospital and went to a waiting area with couches. Somewhere other than my room. That seemed to help a lot and she was more comfortable. Parent guilt is the biggest hurdle right now for me emotionally. I can handle the fear, I'm learning to overpower that. I can handle the changes. Those are only short term. But what's going on right now is affecting Grace in a profound way, whether we make it as routine or fun as possible. She still doesn't have her Mommy at home at night or in the mornings and she needs me. And I'm not there. Greg needs me too.
Above all, we know that Noah needs me more right now and that we are in the best possible place to ensure that we all make it home safe and healthy. We KNOW that but it doesn't make it hurt any less.
I have coped with the reality of our situation by saying these things daily:
Noah will survive his birth. He will be in the NICU for 8-10 weeks. We will take every day as it comes and he will grow up to be a strong, normal and perfectly healthy son. Our family is growing and although it's not how we expected, it's okay. It's only temporary. Long term, this will only be a blip on the radar.
I think I need to really start adding in there that I will not be home with Grace and Greg for at least a month. I am going to miss out on the fall pictures we had planned, the pumpkin farms, the next 30 mornings and 30 nights. This is our reality.
Noah needs me more right now. It's not about me.
This week will be a week of working on being stronger for everyone. For mentally processing what's causing so much heartache and for really focusing all the positive and good energy we have around us into growing this little guy.
Today was tough. We'll have tough days, I know this. But tomorrow will be better. Tomorrow has to be better.
Practice makes perfect
Noah took practice breaths today! Big milestone and shows he's bulking up those muscles for when he makes his grand entry. Very happy Momma.
No changes in blood flow, so same bat time, same bat channel.
More routine blood work today and the usual monitoring.
Greg and Grace are coming up soon, can't wait to see them. :) And a Packers win, life is good!!!
Sunday, Sunday
Enjoying the view today! Looking forward to an ultrasound soon (love seeing pictures of Noah!), lunch, Greg and Grace coming up and hopefully a Packers win today!
The notes, the visitations, the gifts, the outpouring of love: it keeps us going. This is probably the hardest thing I've ever done in my entire life. It's easy to get sucked into the fear and what-ifs and your love and support seriously keep all of that at bay, you keep my tank full and keep me going. Thank you!!!!!!!!!!!! Keep those prayers coming please!
Ache.
I wake up, forgetting where I am and then all of a sudden it kind of crashes back into me. Why I'm here and what we are up against. I have to remind myself that today I am still pregnant and Noah is safe. I wonder if I'll get used to this...
Saturday, September 27, 2014
Who Knew Bed Rest Was Exhausting?
I have a new accessory - special leg blower-upper-thingies to keep me from getting clots while I am on bed rest. The good news is that I can get up, within reason, and walk around, so I get a break from them. :) But I have to have them on while I'm in bed. Remind me to paint my nails when I get a breather!
I had a nursing student shadowing me today for most of the day, so things were BUSY. Sarah and I hit it off really well and she even came back later to meet Greg and Grace. Looking forward to seeing her back here throughout my visit (I'll need to get a picture!) She has to do a case study on a high risk, long term stay patient and the poor thing drew the short straw. ;) (Really, she's an absolute angel and we were instant friends)
The ultrasound tech came in this morning and spent a long time going over things - I was getting worried because she was having trouble getting some shots she needed. Specifically she couldn't get him taking practice breaths. But she assured me it's not abnormal for a 27 weeker to NOT do them all day long.
Later on, the MFM Dr. came in and while he wasn't all smiles, we didn't get any BAD news. Noah is still not getting the blood flow he needs, but it has increased some. They feel it's because of the steroids and similar to getting a false-negative. It's GOOD that it's increased but it's not sustainable. He also gets tested on a scale of 1-10 every day. Yesterday he was an 8 and today he is a 6. That's... okay. But again, not sustainable. But the good news is that he is still okay to stay put. Even if it gets WORSE, he can stay put until they say it's time to take him. They'll increase the amount of ultrasounds and monitoring we do and then take it hour by hour.
But for now, he's staying put.
The four of them came up and brought me hope, friendship, love and good cheer. They also spoiled me today with donuts, Kringle, bagels, flowers and gifts. My tank was full once again and just having them here helped more than words can express. Please excuse my silly faces. Ha!
The best part of my morning was a visit from four special people. This weekend is little Owen's first birthday party. As a surprise, our friend Amber was flying up from Texas with her daughter Madelyn so that they could surprise Owen's momma Bridget. (Follow me?) Little Madelyn is just over 6 months old now and her Wisconsin family has been dying to meet her. Little did we know I'd be here in the hospital at the same time. Talk about being a huge blessing just when I needed it. Amber has always brought peace to my life, she's a huge calm in the middle of any storm. And Bridget? You just know she'll always take care of you and she's got this huge, amazing heart and always just knows the right thing to say or do to make you feel special - she always seems to know what's in my heart as well.
New Digs
I'm officially in my new digs!
I'm at Aurora Sinai in Milwaukee, Labor and Delivery, Room 237.
This is my home for hopefully the next 5 weeks (possibly more if I'm here for the NICU stay).
We are 27 weeks today!!! Per the NICU Doctor, he has a real fighting chance if he comes now for survival. He will be on breathing and feeding tubes but I will be able to breastfeed (pump) and stay with him for Kangaroo care. He will most likely be in the NICU until around when he would have been 40 weeks.
The steroids and magnesium have decreased his odds of cerebral palsy and brain bleeds, our biggest risks.
Keep those prayers coming, we need this little guy to stay put until 31 weeks for sure! 4 more to go! (Which reminds me, anyone have a calendar I can use? If like to check off days)
You guys are amazing. Love you all!
Friday, September 26, 2014
Update: 9/26/14 3:30 PM
Much To Be Thankful For
God knew I had a rough journey coming - and He seriously paved the way by putting so many things in place that all led up to this. Greg just got a huge raise at work, we just got a ton done around the house. Hard days are ahead but seriously, there is so much to be thankful for!
I'm headed to bed to catch up on the sleep I've missed, especially while hooked up to 5 different machines and under checks every hour on the hour. I'm free of constraints tonight and leaving my worries on the counter to pick up and address tomorrow.
Thank you for your love and support, it's truly carrying us forward through it all.
Love you, Missie
This is my normal day :)
The Diagnosis - How We Arrived Here
My pregnancy started off normal - REALLY normal. No major morning sickness, only one HG flare up that landed me in the ER for fluids. But the baby measured small throughout my pregnancy. Eventually we had a growth scan and it was determined that he was less than fifth percentile for growth. He was officially Severe Intrauterine Growth Restricted. That means a few things: More than 95% of babies at that gestational age are bigger than he is. t can be caused by a few things - he could just be small - or there was something wrong.
Something was wrong. For the next 3 weeks, we did weekly Doppler ultrasounds at a hospital 20 minutes from our house.
This week, there was a red flag - blood flow to and from the placenta is not what it should be. We now can 100% say that this is what's causing him to be so small. It's what's called "absent bloodflow" and it's pretty dang serious. It means that not enough blood is getting to him or his organs, which can cause his organs to fail if it gets worse. Not good. Or even worse, he could go into heart failure and die. So we are here, under constant care, in the best hands possible. Each day we will have an ultrasound. And each day that he shows no decrease in blood flow, we will continue on. If and when that changes, we will talk delivery. He won't improve - we just have to basically wait for him to show signs of distress - and hope that it takes WEEKS to get there.
I met with the NICU Doctor today. He has a slightly less than 90% chance of being totally okay. That means he'll survive, but he will have to stay in the NICU and he will have to have a breathing and feeding tube until 34 weeks minimum. Right now we are shooting for 31 weeks, but realistically he can come at any time.
This is where I'll update everyone on our progress. A place I can also share our thoughts and fears and hopes, so that the next person who goes through this, knows they aren't alone.
This was my Facebook update for everyone this morning -
Is there such thing as a normal pregnancy?
Our daughter Grace was conceived 100% by chance and God's planning. About 7 months prior to our wedding, I started taking Lupron injections for my Endometriosis. Lupron puts you into a fake menopause and allows your body to heal and stops lesions from growing on your uterus. Shortly after, I took Provera to start my period and Clomid to ovulate.
We weren't trying but we certainly held no illusions that I could even GET pregnant. A month after we were married, I found out I was 1 month pregnant. We were both terrified and over the moon. Grace is an amazing ball of fascination and wonder, kindness and compassion, sass and spunk, all rolled into a tiny little 2 1/2 year old body.
She was born in the middle of a blizzard at 38 weeks. She was IUGR but just barely. She came out 5 pounds, 9 ounces and has surpassed all milestones. She's amazing and just an absolute joy in our lives.
The hardest thing, so far.
For this child, we have prayed.
I'm Missie. I'm 32, married to an amazing partner in crime and we have a 2 1/2 year old bundle of amazing joy named Grace Elizabeth. I type this from my hospital bed at a hospital 45 minutes from our home where we will journey together, day by day, to bring Noah into this world hopefully 5-7 weeks away from today. Every day will be a battle for he and I and I thank you for coming along on our incredible journey with us.
Here is where our story begins...