Life after NICU and losing my baby girl

Therapy Homework, Day 1

on 09/29/2011

So, We did the therapy thing today. My homework was to write about the pregnancy, from the moment I found out I was pregnant until birth. This should be an interesting trip down memory lane. Here we go.

So, Adam and I were waiting until the current cycle ended before we were going to start trying for another baby. Pretty much, we were expecting that the cycle would end right around Anthony’s first birthday, give or take a few weeks. I was still regulating, so it was hard to predict, but it was getting onto a more “normal” schedule. So when I still hadn’t had my period, I decided that I would take a test and see if something was going on. I wasn’t quite sure why, but I had a feeling that something wasn’t quite right. I mean, it took 14 cycles and 11 months from the miscarriage to the day we found out we were pregnant with Anthony, surely it wouldn’t, couldn’t, be happening without us trying!

We had a friend over (the kids’ godfather) and he and Adam were playing games on the Wii or playstation or whatever. I was on the computer playing my games when I had to go pee. I gave Adam the “I’m gonna go do it now” look and went about my business.
So, I take the test and sit back wondering what the result could be and preparing myself for it to be a BFN (big fat negative) and preparing for the emotions that would surely come as a result. No way could it be a BFP (big fat positive). About 30 second after I set the test down (because during times like that, I just can’t seem to control myself and I become as impatient as my mil (mother in law). Imagine how hard my jaw hit the floor when I see a BFP. A freaking DARK line on the test. Holy crap. Pregnant, again. Two under two. A newborn with a young toddler. And I was still nursing Anthony, so the whole theory of that being perfect birth control is CRAP. I was pregnant. I started freaking out (quietly so no one outside that door had a clue) and laughing. No way! Things like this just don’t happen! No trying this time? No planning, testing for ovulation, temping, charting, paying attention to every twinge and trying like crazy. This was really happening again. I swear that I also started feeling movement. Not having kept track of cycles at all, I had NO clue how far along I could be. Couldn’t remember my last period, but I knew that we had only had “tried without trying” 3 times since Anthony was born. This was crazy! I had to let Adam in on the news, he had to be wondering why I was STILL in the bathroom. I can only imagine what he was thinking that whole time. Was I melted in a puddle because of a BFN? Was I passed out because of the results? I was actually surprised that he didn’t come and see what was going on.
I call him in and show him the test. Of course, he brought Anthony with. It was such a happy family moment. Our little family was growing and now, here we were expecting another and our first hadn’t even turned 1 yet! He still had a week left of being a baby before turning into a toddler! Adam’s jaw dropped and he asked me if this was really a test I had just taken or if it was an old one from when we were pregnant with Anthony because the line was so dark. No, that test was just taken. You are gonna be a Daddy again!
We knew that we needed to get more tests to make sure it wasn’t a fluke, so we made an excuse that we needed to go to Target and brought Morgan with us. Imagine his face when we walk down the aisle with the pregnancy tests and buy a few. Being the kind of guy he is, he asked us “Are you guys trying again? That’s great!” Adam and I shared a look and then told him that we had just found out we were already pregnant again. His jaw dropped and he said his congrats to us. We were so excited. We had to start telling some people and I had to wait until the next day before setting up an appointment for me. Well, since Anthony was in need of his 1 year appointment, we decided to make it a double trip. When we got home from Target though, I left the boys to do their thing with the video games again while I started cooking dinner and called my mom. I told her that I wasn’t feeling well and she asked if I was catching something again. I couldn’t stop giggling and she caught on RIGHT away. She said “Are you pregnant again?” and when I told her yes, she started laughing and I could tell she was getting super excited. I told her that if my math was right, we would be due the day after our 4th anniversary, but I thought I was about 6-8 weeks along. It only made sense because I know that I was feeling SOMETHING moving and bumping around!

Fast forward to November 28th. Anthony’s first birthday party (we had a bigger get together that day because it would be easier to get everyone together then, rather than 2 days before Thanksgiving. We got EVERYONE we possibly could together for this party. This was going to be when we told EVERYONE. We had such a great way of telling everyone too. We had gotten a book about being a big brother and wrapped it up for Anthony to open. Imagine how hard it was for me to keep my mouth shut as everyone came in and kept asking how things were going and if there was anything new in our lives. Of course there was, we were pregnant again! But I didn’t dare tell anyone. We managed to get through everyone coming and seeing Anthony (he was totally overwhelmed with so many people around). We got through the meal (Well, everyone else ate while I fed Anthony and while Adam was opening the other gifts, I finally got to eat) and the present opening began. My heart was beating like a drum in my chest. It was like I was in The TellTale Heart with how hard it was pounding. Surely someone could hear it! But as we get down to the end of the gifts, I hop up and grab the camera, step behind Adam and tell him to go ahead and open it. Everyone was SO confused why I would be taking a picture of everyone else while we were opening gifts for Anthony. Adam opens the present and shows it to everyone, reading the title for anyone who couldn’t read or couldn’t see. I got pictures of everyone’s reactions just as they read it and just as they understood what was going on. While everyone else was figuring it out, Adam’s cousin Holly was putting it together and said “OMG! Megan’s pregnant again!”. I think half the room STILL hadn’t put it together at that point. As it sunk in for each person, they started crying, shouting their congrats, asking how far along, how I was feeling, everything you could imagine. We had to get to the whole cake thing after that so we didn’t get to sit and enjoy the news for too long before needing to move on and get going with the next thing so people could get back home before it got too late. While Anthony was eating his smash cake, I was talking with other people (and of course watching Anthony slowly destruct the little cake we had gotten him) and telling how we were excited, didn’t know how far along, I was starting to feel some nausea and I was feeling movement. Holly thought I could be nearly out of my first trimester already. I didn’t think I was that far along, but I was hoping that I would be through a majority of the morning sickness I was sure to experience. Everyone was so excited. I still can’t get Deb’s face. Her jaw dropped and she teared up right away.

Fast forward again, December 2nd. My first appointment. I had to have a blood draw to get on WIC as a pregnant woman and for insurance purposes. Plus we had to get an ultrasound to pinpoint just how far along we were. Imagine our surprise when the dr dated us at 6w6d. We had literally found out we were pregnant right after the point where a test is able to pick up the hormones. HOLY CRAP. It made it all the more real. Our dr was even really happy, but surprised we were back so soon. We told her that we decided we wanted the kids a little closer in age so we started preparing again around his first birthday. It just worked faster than we imagined. She gave us the official due date of July 22nd, as I had suspected. The day after our anniversary. This could make things really interesting.

So I kept on working at the store (it was winter time so I was wearing a sweatshirt or layers and no one was the wiser as to what was going on unless I said something. I worked through the morning sickness (which lasted much longer this time…14 weeks!), the movements (Again, felt them starting super early!), and quickly growing belly. They aren’t kidding when they say that you start showing sooner after the first one. I was starting to show a firmer belly around week 8 or 10. I had a hard time getting myself together for a belly picture or tracing (like we did for Anthony) and a hard time doing the weekly updates like I did with Anthony. Hell, I kept forgetting to write in the friggin journal we had gotten for Bailey. I know I suck at those things, but it was even worse this time around.

At our 16 week appointment, they asked us if we wanted to do a quad screen test to screen for Spina Bifida, neural tube defects, and Down Syndrome. We couldn’t remember if we had with Anthony, but figured what could it hurt? We were young, healthy, and had had a healthy baby before. No worries, right? WRONG. DEAD WRONG. We came back with an elevated risk of Down’s. A normal couple with a normal pregnancy has like a 1 in 100,000 chance of having a baby with Down’s. We had a 1 in 270 chance. HUGE difference. Well, we had to wait until at least week 20 to go in for a level 2 ultrasound and a talk with a genetic counselor. I was freaked out. I did so much research on the screening and tried to take comfort that its like casting a net into the ocean. Your net is going to cover a lot of water, but when it comes to pulling it in and seeing what’s there, there is a good chance that your net will come back empty. But there’s always that chance that you get something and without the screening, you won’t catch any of it. I tried to tell myself that I couldn’t get worked up until I had proof that something was wrong. Until then, go about life and just don’t say anything to anyone until we know what’s going on.

Week 20 comes. March 9th to be exact. The big day for the level 2 ultrasound (able to see more details, useful when there is a chance of defects) and the genetic counselling. I remember being so scared and praying over and over that we were a false alarm like so many before us. First, we talked to the genetic counsellor. She said we had a very high number where it should have been very low, and that number meant that our chances of Down’s was elevated quite a bit. She couldn’t see any reasons why we would have this pop up and was fairly confident that if something was wrong, it was a fluke thing, not genetic.
We get to go in for the ultrasound. I was so scared and nervous. The genetic lady had put my mind to ease some, but nothing was going to kill that feeling of uneasy until I was told that baby looked 100% fine. After an hour of measurements (all on track or ahead of where they should be), the tech leaves the room to find a dr. My heart sank. She had been looking at baby’s heart and soon after that had gone out of the room. I wondered what could be wrong. With Down’s, there are certain bones that measure way behind or not straight and there’s a fold on the back on baby’s neck that is thicker in effected kids. All of these things looked normal. Sure there was a little more fluid around the lungs than they like to see, but if we hadn’t come back elevated for Down’s, they wouldn’t have thought twice about it. Dr comes in, does his thing with the ultrasound wands, then tells us that baby has a hole in its heart that will require surgery before a year old. I remember falling to pieces and trying so hard not to shake as I cried so that he could keep looking, in hopes that he was wrong. I couldn’t believe it. My baby has a defect. Not just any defect, one that requires surgery, will not heal itself, and is often associated with Down’s. I was in no way upset about the Down’s chances as I was baby’s heart. Down’s children are amazing. They have huge hearts and love with all they have. Its the defects that come with it that scared me. There could be lung issues, bowel obstructions, heart problems, kidney and liver issues, you name it. My baby’s heart hadn’t developed right. What had I done to cause or deserve this? What issues would we have in the future? The dr tried his best to assure me that it wasn’t something I had done, it was just that something hadn’t fully formed. He explained that endocardial cushion defect (also known as an atrial ventricular septum defect and either a complete or transitional av canal defect) means that there is a hole in the septum between the atriums and the ventricles. Its not something that will fix itself and its something that requires open heart surgery. I was crushed. We knew we weren’t going to go any further with any Down’s testing. If we came up positive with that, we would accept and love baby no matter what. We wanted to find out how serious this heart defect was and what we could do about it. We got hooked up with a perinatal pediatric cardiologist who is AMAZING at what he does. We got all set up for an endocardiogram (heart ultrasound) to see the extent of the defect and give the cardiologist (Dr Chip) a chance to make a plan. We went home and prayed for a miracle, accepting that this pregnancy was going to be a really hard one and no matter what, we needed to stick by each other and make sure that we knew where the other was mentally. We also had to accept we would be going to the dr every other week. One visit would be the regular routine visits with our regular OB and the visit 2 weeks later was going to be another monitoring visit with the perinatologist to see how the heart defect was progressing or not.
Week 24 comes (April 4th) and we drop Anthony off at Adam’s aunt MaryAnne’s house because we know its going to be a super long day. We get the endocariogram done and find out we aren’t going to get to talk to Dr Chip just yet because he was adopting a baby that day and was obviously unable to make our appointment. We understood he had this going on, but were upset that we didn’t get notified beforehand so that we could reschedule. I needed Adam to be there when the dr said these things. Adam is more able to retain these bits of information, but we didn’t get our way. We were told the dr would call another day and we could get all our info then. Knowing our luck, it would happen while Adam was at work and I was home alone with Anthony. But anyway, we ended up going through a super long, super boring appointment at the hospital with the heart team doing their thing with the endocardiogram, then barely had enough time to make it to our appointment across the highway from the perinatologist’s office. We made it in time and went through another super long, super boring waiting period waiting for the nurse to come in, the ultrasound tech to get to us, the dr to come in and talk to us, everything. It ended up being about 2 hours longer than it should have been and we hadn’t eaten at all that whole day. Finally we get to talk to the dr and he explains what is going on more with everything. He explains that while its a little more rare of a defect, its not completely unheard of, its a complete av canal defect (hole in between the top 2 chambers and another hole between the bottom 2 chambers), open heart surgery will be needed between 3 and 9 months old, possibly closer to 3 months, and it was advised that we deliver in St Cloud compared to Little Falls as the baby’s oxygen stats would be in the 80s and that would probably freak out the delivery team and they would transport. We considered it, but felt it was something we needed to think about more before we pushed one way or another just yet. In the mean time, the holes appeared that they weren’t getting bigger which was a concern as baby grew. We were also told that we would be getting a call in the coming days from the cardiologist. Sure enough, the guy calls when Adam is at work and I’m half out of it from a nap with Anthony. I wasn’t able to catch all the details, but he put me at ease that he has seen this before and while he wasn’t going to be doing the surgery, he had teams down in the cities that would be able to handle which ever way this ended up going.

Now imagine the appointments at 22 and 26 weeks with the regular OB. Having to tell her that we were going to have a sick baby, it was discussed that we might need to deliver in St Cloud, rather than Little Falls. She said she was putting in the prayers, but in the mean time, she would continue to do the routine stuff and leave the more detailed stuff to the perinatologist. Thank God because it was such a hassle to find a baby sitter every other week on a day of the week that Adam and I used to spend together as a family goofing around and enjoying the time off. We just wanted to have our days back, but until things calmed down, that wasn’t going to happen.

Week 28 comes and we head back down to the perinatologist. This time we know we get to talk to the cardiologist. He’s taking a day that he had off to talk to high school students and has decided that he wants to meet us face to face and talk more details as we are getting closer to the big day. We were so blessed that nothing came up and we got to talk to him after the perinatologist. He was so amazing to talk to. He even drew a diagram of what the surgery would entail and made it sound like a piece of cake (still a serious thing, but like it was a little more routine compared to it being something that is hardly ever done) and came with a little bit of other news. He mentioned that it looked like the hole between the ventricles *COULD* be growing shut. If it is, then that pushes back the surgery a little bit. If not, then its still plan A with waiting to see, but focusing on between 3 and 9 months. But, they will need to fix the holes and fix a valve that looks like its torn in some fashion. But he also told us that after surgery, baby wouldn’t need a repeat and would be able to go on and live a happy, healthy, normal life. We were encouraged by this! This was great! We had a game plan, we had decided it might be smarter to deliver in St Cloud so that we could also get an endocardiogram done the day after birth to see how things ended up when baby came out and just in case something went wrong. Our OB was on board with this and even told us that it was a good thing that we decided to do this because we were due around her vacation time, it wouldn’t be good to induce us early, and if it were her delivering, she would tell the delivery staff to cool it over baby’s oxygen stats. But she wasn’t going to be there unless we went overdue which we doubted I would. Baby was measuring 1-2 weeks ahead and headed for being a big baby. We were told by the perinatologist that baby would most likely be born smaller as most babies with heart defects are. We were confused by this because our baby was about a pound heavier than it was “supposed to” be.

Go to week 32 and WOW, things got INSANE. We were running late to an appointment in St Cloud and nearly got into an accident with another car that was trying to park but instead of hitting the brake, she hit the gas and went flying through 2 parking lots, 2 hedges, 1 lane of traffic, hit a light pole, and spun around into more traffic, luckily still out of the traffic heading to the highway. This place has a driving lane that goes all the way around it and has a little stretch that leads from the main road to the parking lots. She managed to stop her car before she got to the main road. I was freaking out because I didn’t see the car (had my nose in the baby names book) and it ended up causing some mild contractions. I had been having these contractions for a little while now, so I just tried to cool off and not get excited about it all. Lady turned out to be ok (to the best of my knowledge) and we ended up being late to our appointment, but they were obviously ok with it because we had narrowly missed getting into a head on accident. Had we been 2 seconds sooner, we would have gotten it good.
Everything turned out to be a no change with the baby. We were beginning to be thankful for that. Sure we would have loved to hear “Guess it all healed itself!” but who expects that and actually gets it?

Heading into week 36, it was our last time going through the alternating weeks thing as the OB was going to transfer all our files down to St Cloud so that we could get comfortable with a dr down there and be ready for possibly delivering anytime, especially seeing as my contractions were getting more frequent, I was having issues being able to work and come home without being in a ton of pain, and was always exhausted. After a ton of drama to get the files down, we succeeded and got appointments in order. Then we had drama with that appointment not being with the dr we had asked for and that we had all sorts of things to get in line since we didn’t start out with all our appointments done in St Cloud. We got it all done and moved on with life. We were going through so much stress with this pregnancy, we just couldn’t wait for it to be over so that we could get our lives back!

Week 37 I end up going into false labor that was really convincing. We went to the hospital and everything, but were sent home with an appointment later on that day to see what was going on and start the weekly appointments. The dr ended up not understanding why we wanted to be induced (living far away and having a sick baby, we needed to have some sort of plan and end date figured out so that we could get more things in line just in case things didn’t go well. This dr was also very rough with checking me and his bedside manners SUCKED. He did help us get an induction penciled in though. They have a policy where they don’t induce before 39 weeks because they don’t want to take the chance that baby not be able to make it because they got too excited with the inducing. Ok, we just sucked it up and accepted it. We both knew though, we’d be back in no time at all. Sure enough, at 38w4 days, I went into labor at 10:30 pm while doing the dishes and getting things ready for my mom to come and making sure that I didn’t have a million things to do when we got back from having the baby. We ended up leaving our place at 3:30 am with contractions more than just regular, they were starting to piggy back (coming down from one contraction and instead of coming all the way down, you end up going straight into another contraction). We knew we didn’t have much time. On the way to drop off Anthony, we were unable to get ahold of my MIL and started worrying that something was wrong with her. We got to her house and got situated (turns out the phone by her side of the bed was just dead) and left her house at 4:30am. By this time, the contractions are getting a little closer and piggy backing a little more. We flew down to St Cloud, got all checked in and looked at the clock. 5:30 am. I was able to do one lap in the hallways before the pain was far too intense to keep going without having to stop and worry if my legs would hold me up. They kept feeling like I was going to fall and my knees kept buckling and then turning to rubber, I tried the labor ball and wasn’t able to be on that for very long before I once again felt I wasn’t going to be able to make it. I got into the bed and the contractions were starting to piggy back so much that it was feeling like one long, drawn out contraction. They kept checking me. At check in, I was a 5. an hour later, I was a 7. About an hour after that I was at a 9 and begging for pain meds. This labor was going in a totally hecktic direction and I felt totally powerless. I needed something because I could barely breathe anymore. They call in the guy with the meds and he informs me that the intrathecal I’m asking for is only good for 45 minutes, can’t be repeated, and I’d need to be totally still for him to put it in (this is like an epidural but its a one time shot into the spinal column with no line sticking out and slightly quicker recovery, either way, you have to stay in bed until its worn off). I said I know I just need SOMETHING and I was at a 9, the nurse had just checked. He no sooner starts opening the packages when I yell “OMG I have to push NOW!!” as I was fighting my body’s urge to push. Everyone in the room kept telling me I had to fight that urge and NOT push, the dr was just down the hall and they were telling him to get in like YESTERDAY. He comes in and starts getting dressed for delivery and tells me “I’m here so go ahead and push when you need, I’m ready when you are”. I pushed the first time and couldn’t believe how hard I was having to push and it felt like I wasn’t doing anything. Adam told me “OMG, I think I see hair! Push again with all you have!” Only happy to oblige, dearest. Second push they tell me that a head is out and just to hold on while they get ready for the rest to be delivered. I fought hard and when he finally told me I could push again, I pushed with all I had left in me. I was seeing stars when I heard “Its a Girl!” I barely heard it so I had to ask “Girl? as in pink?” They all said yes and I was in love. They placed her on my chest for a little while while they had me relax a bit. I noticed she looked totally different in terms of color compared to Anthony, but I heard a weak cry. She was blue, but she was looking at me, connecting with me. It felt like 5 minutes but was probably closer to only 2 when they had to take her and clean her up. We had chosen from the beginning to keep gender an unknown until birth and were over the friggin moon to find out we had just had a girl. Little did we know, that was only the beginning. She was rushed off to the NICU and I was released from the hospital less than 11 hours after giving birth to follow her to the Twin cities.

Well, that’s my homework. Talking about the pregnancy and delivery. I have to say, I like reliving it because it makes it even more real and brings back the idea that I once had her in my arms.


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