20perfectdays

Life after NICU and losing my baby girl

Where to start…

on 09/26/2011

Well, logically, we start at the beginning. I’m a 26 year old stay at home mom who works very few hours at her husband’s store in town and spends her days chasing after the most energetic little man ever to walk (Nay, RUN!) this Earth. I’ve been with my amazing husband for over 9 years now, married for just over 4 of those. We (well, I have, he helped obviously) have been pregnant 3 times. Our first pregnancy (spring 2008) ended in an early miscarriage 3 days after discovering the pregnancy. We then struggled for 11 long months to get pregnant again. Finally, after being blessed by Father Mark, going to see the ob/gyn, and getting a hormonal test done, we discovered we were pregnant again in March 2009, due in November, just after Thanksgiving. We were blessed with an amazing little boy who lights up our lives all the time. He was a fairly easy pregnancy. Morning sickness, crazy cravings, hot flashes, stretch marks, and one false alarm were the highlights for this trip down pregnancy lane. We both thought that we wanted to have our kids close together, so just before Anthony’s first birthday, we discovered we were pregnant again. We were actually waiting for that cycle to end before we were going to try again. I guess once again, God had other plans for us!

After the same start to the pregnancy (not as intense of morning sickness, but felt sick all day long), we participated in the quad screen (a blood screening done around 16 weeks to test for birth defects such as Down Syndrome, Spina Bifida, Neural Tube Defects, etc, not 100% accurate, just gives a better idea of the risks of having any of those defects) and came back elevated for Down Syndrome. We ended up going in to a perinatologist (dr for babies yet to be born) around week 20 for a genetic analysis and level 2 ultrasound (much more detailed, more specialized). It was discovered at this appointment that our little love had a very serious heart defect called Atrial Ventricular Septal Defect or AV Canal Defect. Basically, there was a hole in the heart between the top two chambers (Atrium) and another between the bottom two chambers (Ventricles). From that point until about 36 weeks, we had a drs appointment every 2 weeks (routine visits in Little Falls with a normal OBGYN one week, 2 weeks later, we would be in St Cloud with the perinataologist and perinatal cardiologist (heart dr for babies yet to be born). We never found any signs of Down Syndrome, but the only way to be 100% sure before birth is an amniocentisis (drawing out fluid from around the baby, carries a 1 in 300 risk of causing preterm labor or miscarriage with little chance of the baby coming out and not dying. We were against this testing, just like we were against finding out if we were going to have a boy or girl.

After months of CONSTANT monitoring and drs appointments, we were released from our regular OBGYN to the St Cloud OBGYNs (the hospital we delivered our son in doesn’t have a NICU or the equipment to handle a baby with a known heart defect). Before we got an official drs appointment with the OBGYN we were going to go with, we ended up having a false alarm (didn’t feel very false to me!) on 7-7-11. We were sent home and told that we could schedule an induction for the following Friday (7-15-11) at 39 weeks because they don’t do inductions before then as a general rule. We were scheduling an induction because we live more than an hour away from the hospital and wanted to have a for sure end date because I was having almost constant contractions and had stopped working as a result. Lo and behold, our child decided it was time to put her foot down and choose her birthday. She chose Wednesday, July 13, 2011. That’s when life as we knew it was thrown up into the air and would come down on us like a giant box of rocks and destroying our feeling of “We are nearly home free, we are almost though this ordeal, now things get a little easier. They only got worse. Drastically, horribly, heartbreakingly worse.

Labor started at 10:30pm on Tuesday night while I was trying to do dishes to prepare for my mom, step dad, and little sister to come up after baby was born. I went to lay on the couch and put up my feet, in hopes that it would either slow the contractions or get labor going even more so. It didn’t slow anything. I knew at 11pm that we were done being pregnant this time around, baby wanted to make an appearance! We left the house at 3:30 am, dropped off Anthony to my mother in law’s at 4:30, and got admitted into the hospital at 5:30, measuring about 4-5 cm and good strong contractions really going their job. I wasn’t even able to walk around the hallways, I was in so much pain. Before I knew what was going on, I was in the middle of the longest, most painful contraction possible. I begged for an intrathecal (like a one time epidural, only lasts about 45 mins and can only be given once), so they called in the guy to do it. While he was setting up, I cried out that I had to push. They checked again and sure enough, I was just about ready. But like Papa and Grandma Tammie, there wasn’t any patience and I knew I had to start pushing ASAP. They got the dr in, I pushed 2-3 times, and Bailey Diane was born at 7:52 am. Yea, that’s right. Less than 3 hours after being admitted to the hospital, I had my baby, without pain meds. Sad fact is, she was born blue. Very blue. She was allowed to lay on my chest for a minute or two before being ran down to the NICU. She was having a lot of problems breathing on her own and needed a lot of help to do so. I sent Adam to be with her. No one should be alone when new to the world and having troubles starting out in this world!

I went to visit and saw my beautiful baby girl. Fighting and showing that she wasn’t going to be going down without kicking and screaming. Adam came back to our room a few short hours later (after we decided her name and had a bite to eat), and told me that she wasn’t doing very good at all. She was struggling and the drs and nurses were trying everything they could think of to get her breathing on her own. Things would seem to work for a little while, then slowly decline again. The idea was discussed that she needed to be moved somewhere else because they didn’t have what was needed to keep her going and get her to breathe like she was supposed to. Less than 12 hours after giving birth, I was discharged so that I could go with when she was transported. Her ride arrived from the Twin Cities about 12 hours after her coming into this world. They rushed her down to the University of Minnesota Children’s Amplatz Hospital (U of M Amplatz) and she technically died on her way down. Her heart had stopped, but luckily, they were able to use chest compressions to keep her going until they got her hooked up to the machines she needed to stabilize. They got to the hospital, got her heart going again, hooked her up to the basic machines she needed, and waited for us to arrive before taking any more action.

We came about an hour behind her (they get to speed, we had to go a little slower and deal with getting everyone needed down to the Twin Cities. Soon after we showed up, Dr Bendel (the dr on staff at the time) informed us that she had technically died on her way down, was now stable, but they were looking at putting her on a machine called ECMO (Extracorporeal Membrane Oxygenation) that would completely bypass her heart and lungs so that they could rest and try to heal from the trauma they had endured so far.

This would be a good time to backtrack a bit and explain why her poor lungs and heart had been through so much. From the start, your lungs aren’t inflated at all until you take your first breaths. When Bailey took her first breath, her left lung didn’t fully inflate. When they tried to the lung more, they were forcing air into her lungs. That didn’t work too well, because it would cause the air sacs to burst and just let the air into her chest. While she was in the NICU in St Cloud, they had to constantly suck the air out of her chest (because it wasn’t in her lungs, it was compressing them) and ended up putting in a tube that went directly into her chest and let the air out. While she was in the NICU, there was a machine that was sucking the air out. When she was being transported, there wasn’t that suction to keep sucking it out. That meant that they were pushing air into her lungs to keep her oxygenated, but the air was being forced in and was just filling her chest more and more, compressing on her heart and lungs, keeping her from being able to breathe very well at all. Her heart had stopped because the air had choked it out, essentially. When they got to the U of M, they put in 2 more chest tubes and started suction to keep those going and her color came back very well. They wanted to wait to put her on ECMO until later but she didn’t improve at all (in fact, she was starting to fail again). This would allow her body to heal those air sacs that had burst from the forceful air being shoved into lungs that didn’t want to expand. I have to say, it was one of the most frightening experiences of my life to have them explain to me what the machines did and what they had to do to get these machines hooked into her. The put cannulas (metal tubes used to drain off or introduce things to the body) into her jugular vein and carotid artery, pulling the blood out of her body before her heart, taking it through a machine that would oxygenate it, then putting it back into her body after her lungs. They had an added step that cooled the blood to also cool her off. They did this for 3 days to slow any damage done by her having such low oxygen levels in St Cloud and crashing on the way to the U of M. After 3 days, cooling does nothing to slow any damage anymore. After the 3 days, they warmed her up half a degree every hour until she was back where she should be.

During this first night, we were given a boarding room in the hospital to make sure we were there, just in case she ended up crashing again or something else happened. Plus, there was no chance that we would have been able to find a place to stay at 1 am when we were finally told we could go get some sleep. Sleep, what a suggestion. Didn’t have much chance for that. Too much worry for my newborn daughter, worry for keeping my toddler son entertained, trying to keep myself from falling over (remember, I was discharged less than 12 hours after giving birth. I was sore, tired, bloated, and really feeling a lot of pain. Crappy pain. Painful pain. No pain meds. Not even an ibuprofen! I guess its just a small taste of what the human body can really endure and keep on going. Thankfully, I got into the Ronald McDonald House (RMH) on Saturday and was able to start getting myself into a routine and make sure that I got through this in one piece. The people in the RMH are amazing. Seriously, people. Save those pop tabs, donate money to them, drop off food, clothing, toys, books, anything you can spare. Its much needed and much appreciated. They don’t turn anything away, but don’t give them your garbage. What these people do is amazing and no one should be treating them like they are nothing.

Now, the point of this new blog is for me to explore more of what happened during the tsunami of events that surrounded Bailey’s birth. I’ll be looking into things I was told when I was down there that I didn’t fully understand until much later (literally, last week in some cases), exploring how life has been since my precious little girl, and some letters to that precious little lady that touched my life so deeply that I could never forget, even if I wanted to (which I hope I never forget!). I’m eventually going to turn this into a book or something along those lines for other parents who have to go through the painful journey I’ve now been down.

I’d like to take this chance to thank the amazing group of people I’ve met on Facebook since this has happened. The ACD Parent group has been…incredible to us. So understanding and always there for everyone, during their highest highs and lowest lows. You guys have been awesome to us and I can never thank you enough!

Next time, I’ll try to stick to one part of the topic and not make it so lengthy so that people would actually want to read this, rather than just glazing over this or that to give a huge chunk of information.

Until then, thanks for stopping by, check back often and I’ll so what I can do for anyone looking for information on the topics I cover. Until then, you know the gist. If you want more details of this or that, please check out our caringbridge website at www.caringbridge.org/visit/baileygosiak and you’ll get a great mental picture of the whole thing.

For now, many thanks for reading!

Megan

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