Our Week in the NICU – Part One

Thinking about our week in the NICU at Mayo St. Mary’s Hospital in Rochester, must be one of the foggiest weeks of my life.  After giving birth, hormones are running wild, you are trying to take in every moment, needing to pump, and the nagging thought of when you will hear the words home. 

Then, being able to see Adeline at any time was an awesome upgrade now that we were at the same hospital!

During our week in the NICU, they had visitor restrictions on due to a late flu season.  This worked out well for us since the NICU did not provide much for privacy and it had pretty tight quarters.  

When we were finally settled into our new room, we wanted to go see Adeline, and the nurse was ready to take us!  We were staying on the fifth floor of the hospital and the NICU is on the third floor.  As we followed the nurse slowly, as I insisted on walking, we wonder what we should expect.  We had been watching Adeline on the television but hadn’t seen her since birth, which was over 24 hours ago.  

As we got to the third floor, we walked into the NICU as this is a locked unit.  Every time we entered, they obviously wanted us to wash our hands at the station.  We would then check in with the desk to get name tags, and then we could go see Adeline.  The nurse walked us into the open NICU room, and it was almost full with five babies.  Some babies were in little cribs, one was in an “incubator,” and Adeline was in a bed with a warmer on it.  

As we walked over to see Adeline, it was overwhelming.  Now, I was seeing her, in person, with all the wires.  My poor little baby, and this was just going to be the start of it.  The nurses started talking to us, telling us a bit of what “rounds” had discussed that morning, what the pumps were, and what the monitor were for.  

Even though we had already seen it before, it was hard to see Adeline hooked up to so many machines-many of which I didn’t know what they were for.  Pumps, computers, and a feeding tube going down her nose.  

Seeing this and being in the situation can be traumatic for any parent.  Given all these wires, as I like to call them, it was scary to hold her.  I thought for sure I was going to hurt her or pull something out.  Every time I wanted to have her in my arms, and I was sure hat a nurse would put her in my hands.  

Adeline during her week in the NICU
The picture is fuzzy, but she was such a blessing. The little red glow you see is her pulse oximeter probe that tracked her oxygen rates of her blood.

Given I had no medical background, everything they told me went in one ear and out the other.  I figured that were the nurses (and doctors), what did I need to know about this stuff?  Not that the staff was terrible, but how naïve I was, in so many ways!

  Little did I know what I would learn in this our week in the NICU!

The monitors would continuously go off, but the nurses assured us it was ok.  As I held Adeline, she just looked so perfect.  There was no way our little girl was as sick as they were telling us she was! 

 The cardiologists had done an ECHO (it is like a heart ultrasound) on Adeline, and they were pleased with what they were seeing.  But they wanted to continue to watch Adeline over the next few days to see what their plan for her was.  They wanted to see what her oxygen saturations did over the next few days as her PDA closed. (After a week in the NICU, I still didn’t know much about these things)

All I heard was: “We aren’t doing surgery right away.” 

Whoop! Whoop! I knew all I needed to know.

Since some of these children require intervention quickly, I was SO happy about this! I was in so much denial about the first surgery that I was hoping they were going to say she wouldn’t need any interventions.

Every free moment Jeremy and I had; we would head to the NICU to sit with Adeline.  It was so wonderful being in the hospital because she was at least in the same building.  If we weren’t by her, we could see her on the television in our room.  When we were in the NICU, we would take breaks every few hours to go back to the room.  This allowed me to pump, get medications, and even take the occasional nap.  Even though I wasn’t getting up with Adeline every few hours, during the night, I was still needing to get up to pump. Pumping is tiring! I know I could have attempted breast feeding, and I did.  I did not enjoy it and if I pumped, we would at least know how much intake Adeline was getting.  

Every morning the doctors would do “rounds’ where they would walk through the NICU and talk about each baby.  Events that happened in the last 24 hours were discussed, what they anticipated for the next 24 hours, and then they answered questions for both parents and other doctors.  This was something Jeremy or I always tried to be present for.  Even though we didn’t normally have questions, as we were so green behind the ears, it was still nice to hear what was going on from their perspectives.  Rounds were in the morning and could happen anytime from 8:00 am to noon.  Since our large room didn’t have as severe of babies (for the most part), round times were never the same two days in a row.  

Jeremy would always try to get down to the rounds while I was inpatient.  This allowed me to get some rest and Adeline and he could get some bonding time.  Given it was springtime, and we are farmers, I figured he would maybe be busy with field work when we got home.  I wanted to be sure they had some time together.  I would watch the two on the screen and admire them 

Jeremy would generally come back to the room after the rounds and tell me about what the doctors had discussed.  He didn’t typically have much to report on, and we were not always sure what they were talking about anyways.  Yes, the nurses were still available for questions, but for some reason, we didn’t ask much for questions.  We always assumed, yes, assumed, if it was bad enough, they would have a more detailed conversation with us.

Just as we were starting to get into a routine of our hospital and NICU stay, it was time for me to get discharged from the hospital.  We would have stayed if we could since it was so convenient, but it was time to go.  Adeline was born on Monday, and I discharge on Thursday morning.  Recovery had gone well, and I was ready to sleep in a regular bed!  Again, how naïve I was.  The discharge was what I had expected it to be, hurry up and wait!  After the doctors came by to see me, go over the things to watch for, it was time to go! We had packed up everything, got it in the vehicle, and went back to the NICU for the rest of the day. 

For my c-section moms, this was not a good idea, to spend so much time in the NICU!  My feet swelled so bad I could hardly walk by the end of the day!  Be sure to keep your feet up some if possible, take care of yourself! 

Of our week in the NICU, the first few days were uneventful.  As the week moved on, it got so busy! We also learned more from the doctors as we picked up some more of the “medical lingo.”  And when I say some, I mean some, we still had a long way to go in that department.  

The beginning of the journey was easy; now, we were going to be getting a bit more of an education! The week in the NICU was just starting!


The Morning After Delivery

The morning after delivery was a busy one.  I needed to do the pumping thing again, I was already not liking this new this task.  I needed to eat since pumping is exhausting!  I was finally getting to a point where I could walk around as well as a person could who have just been cut open.  The big thing about the walking was that I was able to do so without feeling nauseated.  By this time the nurses were encouraging a shower, which is always a heck of a task. 

Just a little disclaimer for all those who have not experienced childbirth, there is no room to be discreet about things.  At first, especially for a girl like me, this is hard, but just wait for what you will have to share and show! Have you passed gas yet? Have you passed any stool yet? When you push to get the stool out, you should do this.  Let me look down there and check for blood clots, you know, make sure everything looks ok.  I know they are doing their job…but man, oh, man!

Anyways, back to shower time.  The nurses gave me special medical soap since I had a huge incision to clean up around.  By the morning after delivery, you are feeling it! Shower time at the hospital after a baby is not the refreshing experience I was hoping for.  Instead, in my situation, it was almost a punishment!   The soap dries your skin out, stinks, and it is impossible to put lotion on afterward.  Lotion, now lotion requires way too much motivation and logistics.  Forget about doing your hair, so I didn’t even bother washing it.   The shower was done, someone was going to stop by to fill out the “official” paperwork of the baby’s birth.  

Doing the paperwork was all fine and dandy, except we STILL did not have a baby name picked out! We had about ten minutes before the lady came to see us.  

The name was something we hadn’t discussed much because we were not sure of what our future was going to be.  Attachment to an unborn baby with all the unknow was too scary. But now the baby was here; we knew it was a girl, what were we going to name her? Our other girls have family names, but we weren’t sure we were going to go that way again.  

I have always loved the name Adeline, as I am a sucker for old-fashion names.  Talking with Jeremy, I told him it was the only name I could decide on for a girl, nothing else really excited me.  I asked him if he had any ideas.  In normal Jeremy fashion, he didn’t have too much to say.  The only name he would maybe want to use would be his grandma’s name, Josie.  Her actual name was Joann and he wanted to use that.  So, after talked some, we decided on Adeline Joann for our little baby girl.  

By this time, the lady came into our room to fill out our official paperwork. After completing it and making sure everything was right, we had a name for our little girl, and they were going to send in the paperwork to make her “official.” 

Then, it was time for the lactation consultants to visit.  As I had mentioned previously, I was just pumping to save money. I appreciated that these women were coming by to see me, but I didn’t have much interest in what they were coming to talk to me about.  If I had questions about lactating, Dr. Google and Facebook are available 24 hours a day and don’t want to get up in my business to help me.  They talked, I listened and pretended as though I was interested in what they had to say.  I hope they bought it, but I don’t hide those kinds of things well.

Checking the morning after delivery list off, one by one

Peeing and Walking…check

Shower and Dressed…check

Paperwork Done…check

All the Doctors Stopped By…check

Packed Up…check

I was ready to get over to the other hospital and see my baby!  I just needed the last signature on the paperwork and a non-emergency ambulance to bring me to the other hospital. 

After what seemed to be forever, we had the final doctor signature. I shouldn’t have been surprised, things like this NEVER move along quickly!

It was then time to get onto the ambulance stretcher and they were ready to drive me over to the other hospital.  They strapped me on the stretcher, and I was wheeled off to the ambulance.  I made some nice small talk with the EMT’s as they drove me over.  They then wheeled me up to the new and much smaller room I would call home for the next few days. We waited for our nurse to come by.

Both of us were anxiously waiting to go see Adeline! We hadn’t seen her in over 24 hours.

Before we left, we talked with the nurse about being able to see Adeline on our television.  At our hospital, there is a camera on the baby, and you can see them on a hospital television if it is set up for it.  We knew this could be a long, technical process, so we wanted the nurse to get on it.  I should note here that the nurse I had was pretty much my own personal nurse due to how the process works. 

We finally got to see our little lady the morning after delivery!

We talked with the nurse and continued to get settled in.  She administers some meds and I even did some pumping while waiting.  Three hours have never gone by so fast in my life. The milk still hadn’t come in, but the process still needs to be done to stimulate it-at least that is what I am told.  It came in last time even though I didn’t breastfeed…it was PAINFUL…just in case you were wondering.  

It was almost time to go see our little lady.

Were you able to stay close to your baby after they were born?  I have heard of some hospitals being able to keep the baby in the room for a little while so the mothers can always be closer.  What a cool idea, although I would think it would be a while until many hospitals are to that point for obvious reasons.  How was your morning after delivery? Was it a chore for you as much as it was for me?


Baby is Coming!

There is always a lot of anxiety leading up to a baby coming.  Sure, you are excited, but at the same time, are you ready for how this baby is going to change your world as you know it?!

My unborn baby had a severe heart condition. I couldn’t be done being pregnant soon enough! At the same time, I knew the baby was safe inside me.  There was so much unknown, and we all live in a society where we do not deal with the unknown well.  Being the planner I am, this was hard, but I just had to trust God!

I had talked with Jeremy prior to having the baby’s due date and told him I wanted to have a nice relaxing evening before the baby came.  We were going to be delivering baby 1 ½ hours away, so I wanted to head that way the night before.  I booked a hotel, and we made plans the night before to go out to eat with my aunt and uncle, who lived nearby the town we were delivering in.  It was a nice, quiet evening!

Then, big surprise, I had trouble sleeping all night.  Any pregnant woman will tell you how uncomfortable it is to be pregnant, especially in the last month of it.  Then, all I could think about was in less than 24 hours we were going to have a baby here.  A baby with a severe heart defect. What was going to happen?  What did our future hold? Question and emotions kept coming over me:





Praying for a miracle.

 I was finally able to fall asleep and get some sleep. 

The next morning, we had to be to the hospital by 7 AM with hopes to have a baby around 9 AM. I was the only person scheduled for a baby that day, so I didn’t have to be at the hospital too early.  We went to the hospital, got checked in, and the nurses walked us to the surgery prep room.  I got dressed in one of those beautiful hospital gowns and we started the process.  Holly cow, we were going to have a baby here in a few hours! I had to fill out paperwork, answer a ton of questions, and have a ton of monitors on me. 

An important question remained unknown for us, though, what was going to be the baby’s name? Jeremy and I have NEVER agreed on a boy’s name, so if it came out a boy, we were going to be screwed(learned from previous pregnancy). And we hadn’t even started to discuss possible girl’s names.  

Since we had spent so much of the pregnancy unsure of what was going to happen, we had never really picked out names.  It was as if we avoided giving the baby a name; there we wouldn’t be as much attached.  So, when it came to the nurses asking that predictable question, “What will the babies name be?!”, we would just look at each other with uncertainty and say, “We don’t know yet.”

Finally, Jeremy got his fancy, disposable scrubs on and supported me through my anxiety.  The anesthesiologist came in to start my IV so we could get things rolling.  Ugh, this was really happening!  I was so nervous I was going pee every fifteen minutes. I didn’t even know I had that much water to get rid of!

It was time to be rolled into the operating room.  I am always so nervous about this part.  See, when my mom had her c-sections, she could feel EVERYTHING.  Ugh, could you imagine having to lay on that table and feel everything?! I am always scared that the spinal block won’t work!  

They had me sit up on the table, turn, and have my legs dangle off the edge.  One of the nurses sat there and told me to grab onto her hands and squeeze as hard as I could.  Crazy, but a smart woman.  I was clenching onto her hands as I felt the needle go into my spine…OUCH!!!  What comes next is one of the weirdest feelings ever.  As they finished up the block, I felt a tingle slowly move up my legs and then they went numb.  The medicine was working…I think.  After they were done and the numbness continued, they laid me back on the table to further prepare me. 

Next, they put up a curtain and put my arms into position.  The anesthesiologist proceeded to start checking me to see if I was getting numb.  He took an ice-cold gauze and asked me if I could feel the cold on my arm (which wasn’t numbed), and I could-it was cold! He then put the cold gauze on an area that had been numbed and asked if I could feel it.  

Well, of course, I could feel it! That gauze is freezing cold!

He decided to give me a few more minutes while we waited for the medicine to do its magic. Again, he tried and this time when he tested, I could feel him, but not the cold.  I still told him I could feel it, I wanted to be damn sure I wouldn’t feel anything.  

He, again, waited a few more minutes. It was time to test again, could I feel the cold? By this time he was catching onto my “feeling” answers. When he asked if I could feel him, I said I guess I couldn’t. He repeated back to me, “You guess you can’t?  Does it feel like this?” He proceeded to put the cold gauze back on my arm.  “No, it doesn’t feel like that(cold).”  

Fine, you win, here we go. 

I was sure to tell him how I normally get nauseous.  He got the meds ready for the nauseousness because we didn’t need any of that! He told me he was ready, and he let the doctors know we were ready to start.  During this time, they brought Jeremy back into the operating room.  He held my hand and they started.

The c-section itself is pretty much a hurry up and wait game. Anyone who has had a c-section knows this.  They started to cut, pull, and move things; it feels SO weird!  Anyone who has been through this knows exactly what I am talking about!  It is an odd tugging sensation as they move this and that…and weird is an understatement.  While they were “digging” around, Jeremy and I were making conversation with the anesthesiologist. He was always good about checking on potential pain or if I was becoming nauseous.  

PS- I had been nauseous several times already! 

The doctors finally announced, it was time to take out the baby.  Jeremy and I clenched hands tightly and waited for a few moments, you could hear pins drop. They pulled the baby out, and then you could hear some crying. They let us know so far the baby was looking good.  After some work on their end of the curtain, they lifted it a little for us to see whether it was a boy or girl.  It took me a moment to register all this as I wasn’t expecting it, but I loved it!  When we looked, we had a chunky little GIRL!! Better luck next time, dad.  

They took the baby into the next room and started their assessment.  Since our new little girl had a known heart defect, they had to treat the situation differently.  During their evaluation, they gave us short updates that she was ok.  We could hear her in the next room and eagerly waited for them to finish me up so we could meet her.  Since this was my second c-section, there was some scar tissue to clean up, which seemed to take an eternity.  They did great a job; I am just impatient!  

After they had finished me up, it was time to roll me into the next room to meet our new little girl.  They rolled me in, there she was!  She had a ton of cords attached to her as well as a C-PAP machine.  I held our little girl for the first time, and it was one of the most awkward things ever.  

Not only was I trying to enjoy my little girl that had C-PAP and IV’s attached, but there was a room of doctors and nurses watching me.  I know this is almost an everyday event for them, so they do not think twice about it and are very respectful.  To parents who are already overwhelmed, it is just eerie.  You do not get to snuggle your newborn in the same way as a traditional birth.  But, at the same time, you are trying to enjoy every moment because you do not know what is going to happen next.  

When our time was done(about 20 minutes), our new baby girl got put in a fancy contraption used for transporting babies to the NICU at the other hospital. Yes, at Mayo, the NICU is at a different hospital.  I was rolled out of the room and brought to my very nice maternity suite.  It is so odd giving birth, holding your baby, and then your baby goes elsewhere. 

In the maternity suite, things were as normal, minus a baby being there.

When you have a c-section, the sooner you can get up and walking, the better.  In my situation, I knew once I could get up and move around, I would be able to go to the other hospital. Just get me closer to my baby girl!

I am one that will fight off taking medications as long as possible, and this recovery wasn’t any different.  I ALWAYS get nauseous after my c-sections…if I eat anything, it isn’t staying there.  So, I always start with the natural options offered for trying to kick the nauseous feeling. 


Well, this time was no different. I told them to bring on all the natural stuff.  Every time I stood up to take a few steps, I almost throw up right there.  I would shimmy back to the bed and remove some of my stomach contents.  By this time, it was probably 5 pm.  I wasn’t showing any signs of being able to walk far and I wasn’t peeing enough.  These things both needed to be completed before going to the other hospital. There was a possibility of that happening yet, but things needed to get rolling here soon.  After several attempts to walk, I asked the nurse to bring me some medicine for the nauseous feeling.  I had to kick that feeling before I was going to be able to drink enough fluids to pee.  

After the medicine started to kick in, I pounded the water.  I had to hurry if I wanted to go anywhere!  The nurse suggested we get a dinner plate because she wasn’t sure if we would be able to eat after we got moved.  So, it was just going to be another thing to slow us down, but you have got to eat!  So, eat we did. 

Now, it was almost 7 pm, it was starting to get late.  The nurse checked everything out and said she would go talk to the doctor to see if I could get the green light to move over to the other hospital.  After a lot of discussions, the doctor decided that we had to wait one more hour to see if I would pee more. I just wasn’t getting enough out!  UGH!!!

Another hour passed. I was able to take steps with no problems. Around this time, the nurse mentioned how we were able to watch our baby girl on the television screen, but she would have to find someone to get it set up. After about an hour, with no baby on the tv yet, the nurse came back in to check my urine progress.  It was terrible.  I had hardly had any output, which made no sense to me!  I had already had so many fluids!  She told me when she talked to the doctor, she would see what she could do.  Needless to say, the doctor was not impressed with the output, or lack thereof.  No-go tonight, I would have to stay the night.  Major letdown.

The whole kicker was that about a half-hour after the discussion, I was making AMAZING urine. Go figure…

That night we watched our little nameless girl up on the tv.  She didn’t do much, but we just watched her in the way that new parents watch their newest member.  In awh – how did we do that?! 

This time around I decided I was going to exclusively pump.  They always say, the breast is best. I thought I would give it a shot to potentially save some money. I fed formula to our last one, so this was going to be a different adventure.  The nurse would come in and remind me to pump every so many hours…it was tons of fun…. No judgement here.

I remember one of the times I was pumping very vividly.  I was watching our little girl on the tv, I thought maybe it would help with the pumping.  As I was watching, she started to fuss and cry.  I started to cry.  I was supposed to be there with my baby, but instead, I was here, laying in a bed not helping her.  

Instead I was watching a stranger take care of my baby.  It was so hard to deal with, it really makes you feel like a failure.  You couldn’t grow your baby right, she is damaged, deal with it.  

Obviously, I did not truly feel that way.  But, when you are feeling so helpless, you can’t help by to let those terrible thoughts sneak in.  After I finished my pumping, I gave myself a pep-talk about how I was doing the best I can.  Baby girl would be ok until we were able to get there.

How did you feel while in the same type of situation? Please tell me I am not alone in my feelings of helplessness. I have come a long way since these times, but along with all the hormones, it was just a lot to take in. If you are a mom or mom-to-be in the same situation, you are not alone!


Complex Pregnancy & Preparing For Baby

During this time, there was so much uncertainty. Having a complex pregnancy just changes things. For the longest time, I debated even setting up the crib and even buying diapers.  

Was baby going to make it? 

And also if the baby did make it, when would they be coming home?  

The surgeon had told us to expect at least 2-4 weeks if all went well. 

What if it didn’t go well?

Since finding out about our complex pregnancy, all these questions were always swirling around in my head. I am a planner, but there was so much unknown in this situation!

How is a person supposed to plan around that? 

As February came, I decided it was time for me to start doing some things around the house. There was a chance that the baby may not come home with us, but I would make things so much harder on myself if I came back to nothing set up. I made a plan of what I needed to do before the baby came.

I needed to have the mindset that the baby was going to be okay. That things were going to be okay. I think this was the only way I was able to get through it all. As I would slowly do something, it would sneak into my mind, what if I have to put this all away because there is no baby. 

Scary. It is impossible not to feel this way sometimes! I am human! I carried on though, it was a risk I was going to have to take.

Many things had to be done before the baby came. I would recommend any of these things, in no particular order:

Make freezer meals and lots of them!!

I wanted to be sure to have plenty of easy meals available to us when we got home. I wasn’t sure what to expect regarding how demanding the baby would be. This ensured that on difficult nights we would still have a meal! Also, we were hoping that the person who would be watching our other girls would be able to watch them at our home. We knew this would be different for the girls, and then they could have some normalcy. 

One less thing to worry about is always a good thing when adjusting to a new norm! Plus, I love to be in the kitchen, so it was a stress reliever for me.

Few helpful things to keep in mind:

  • Some freezer meals need to defrost 24 – 48 hours in advance
  • Make some freezer meals for the slow cooker
  • Make some easy to heat things such as taco meat, breakfast burritos, shredded chicken, and soup.
  • When you make meals, double it and freeze one of them.
  • There are many places that provide recipes. I used Taste of Home for most of mine, as well as Allrecipes, and Large Family Table. I made things such as Tator Tot Hotdish, Meatloaf,

Do some good, deep cleaning including polishing the floors

I knew with this complex pregnancy I would be having a c-section with the baby. My last baby had been born that way, and a v-back was not for me. There is some recovery with the c-section, which can make some household chores difficult. Even though I wasn’t anxious about it, I just wanted to make sure the house wasn’t needing a deep clean when we got home.

Also, with someone else being in our home with the girls, I didn’t want them to feel pressured that they had to clean a lot to keep up. And, a girl needs to nest when having a baby!

If you have the funds, get your house professionally deep-cleaned

I would recommend a professional cleaning you have the extra funds. This was something I decided to fork out the money out for.  Search for deals on Facebook or Craigslist if you are interested in it.  Make sure you check out reviews and verify that it is a reputable company! 

As I had said previously, we were going to be having someone stay at our house with the girls. My sister, who was staying with our girls, didn’t need another thing on her to-do list.  The cleaning allowed my last week before the baby is more relaxing, but it would hopefully provide her with some relief as well!

Line up childcare for the other two girls

I am very fortunate that most of our family lives pretty close to us. I am even luckier that I have an older sister who happens to be single, has no kids but loves kids. She was willing to stay with our girls in our home (most nights), so the girls could at least sleep in their beds every night. This would also help them have a consistent schedule, which we all know kids crave, and one of our girls requires it.

Line up for help with the dog

Sometimes it just wasn’t feasible for my sister to stay at our house every day. For the days she wasn’t going to be at home with our girls, I had to find someone to help with letting out the dog, feeding him, etc. We are very fortunate that our neighbor was willing to help with this!

Get bills paid ahead of time so I didn’t need to worry about it while out

When I first learned I was pregnant, and before I learned I would be having a complex pregnancy, I decided to start saving $50 every week, so things wouldn’t be as hard while I was out of work on maternity leave. It was hard and money was tight. Standard leave is 6 – 8 weeks in the United States, and that is a long time to go without pay. With a complex pregnancy, who knew what to expect! I am happy I had done this. I ended up needing that money more than I had ever anticipated!

Buy diapers, wipes and other baby supplies

I love me some good deals, and I started to watch for some good sales. I was able to stock up on some diapers and wipes primarily. I was very nervous about buying too much, but I figured I had to go with it, so I wasn’t without it. 

Future Tip: Facebook Marketplace is a great place to sell any extras!

Wash Clothes and Put Them Away

We didn’t know whether we were having a boy or girl. I still had all the clothes from Lucy, so I went through it all and picked out the gender-neutral things. We also didn’t know what we were having when Lucy was born, so there were more than enough clothes to pick from! Ugh, and when was Lucy small enough to fit in these?!

Get bottles, toys and the car seat ready

Pulling baby supplies out and getting them ready-made baby even more real. I still had all of these things leftover, so there was also some reminiscing! Oh, how things were going to be different this time.

The car seat. You read all the posts about the best time to install them. Jeremy and I talked about it a lot and decided not to install it…yet.

The first problem was that my vehicle is a tight fit for one kid, a booster seat, and a car seat. Why “crush” the kids any sooner than we had to?

Second, how long would the baby be in the hospital? We already knew from what the surgeon had told us that we could expect 2-4 weeks of inpatient stay—no sense in getting too ahead of ourselves.  

Pack the non-traditional bag for the hospital

We knew the first stay would be more extended than your typical pregnancy. Having a complex pregnancy throws everything out the door! From my research, I already knew that these days could be long and I needed to try to fill them. I started to think of things I would maybe need as well as the baby. For baby, I knew I could get away without bringing too much.

I was okay with the baby using the hospital outfits until we came home, so I packed two going home outfits. I had no idea how big the baby was going to be, so I wanted to be ready. I also brought the baby a blanket. The checklist for the baby wasn’t very long!

Now, I like to overprepare, so I brought a lot of things for myself to do. I brought the baby’s new baby books, books to read(both paper and electronic), chargers galore, chapstick, and several changes of clothes. 

This was on top of all the other things that one would pack in their typical hospital bag. It is so hard to know what you will need with a complex pregnancy, as it is not something you have experienced before. You can read all the discussion posts, but hospitals are so different, as well as your wants and needs. I will say, in this situation, I did feel it was better to over-prepare than to under-prepare. It is hard enough to leave the baby, but I knew it would be hard not to be with the baby but rather be at the store.

Have a family night the weekend before the baby comes

I knew when the baby was coming since I was having a c-section. We are very much homebodies, and we typically do not do these kinds of things, and they are very much a “treat.” Before the baby came, we wanted to do something special with our girls. Given the complex pregnancy, knew our lives would probably be changing drastically. 

So, the Saturday before the baby was born, we went and saw a movie as a family, bought some (junk) food at McDonald’s, and drove around to look at area flooding.  We typically save this kind of thing for a birthday treat, but who knew what the next year would bring? This was made even better considering we were the only people in the theater.  I know this doesn’t sound like much, but it was a fun activity for us. It was a weekend I know I will not forget!

Everyone’s list is going to vary significantly due to needs, but these were some of the big things I wanted to be checked off before the baby came. 

The baby came at the end of March, but I started making my list in January, started checking it off in February. I am so thankful I worked ahead as I did!

What things did you do before your baby came? 

Which ones would you do again or leave behind?


The Appointments…All These High-Risk Pregnancy Appointments!

Mayo Clinic of Rochester in our “backyard,” and we are fortunate for that. Our first big day of high-risk pregnancy appointments the day after Thanksgiving, November 23, 2018. The time between our initial ultrasound and these high-risk pregnancy appointments weren’t as agonizing as I was expecting it to be.

I tried not to focus too much on the negative, which was that it was something severe. Instead, I was holding onto the hope that the first Doctor was right. Hopefully, the baby was “normal.” Had I not done that, I do not know how I ever would have made it through that time. I said so many prayers during that time that it was true.

Now, the first time you go to a clinic of this size, it is so overwhelming. Not only is the clinic massive, but Mayo is a melting pot. There were people from all over the world there! Thankfully there were volunteers, employees, and “seasoned” patients at every corner willing to help direct you.

The first high-risk appointment of the day was the Echocardiogram, ECHO for short. I had no idea what an ECHO was or what to expect. What we found out was that it was an ultrasound of the heart. 

I have very watery eyes sometimes. On this day, of course, one of my eyes kept watering for no apparent reason, and they kept asking me if I was ok. I am sure to this day, they thought I was trying to keep my sobbing to myself! Anyways, the ECHOs take quite a long time due to the number of pictures they take looking from different angles, blood flow, and measurements.

After the Tech finished up, she let us know the Doctor would be in soon to talk with us. Then, after about a half-hour, a cardiologist came into me with us. He told us the news I was hoping not to get, the baby still definitely had a heart defect. We still had a lot of time left in the pregnancy and things could change. Although unlikely, something could change – better or worse.

He proceeded to tell us that the baby had Tricuspid Atresia.

Tricuspid Atresia falls under the umbrella of Hypoplastic Right Heart Syndrome. Hypoplastic Right Heart Syndrome isn’t actually a thing, but rather it includes several right heart defects. He went on to explain that if he had to choose between Hypoplastic Left Heart Syndrome and Hypoplastic Right Heart Syndrome, he would probably choose the right side of the heart. 

Neither situation is EVER ideal, they each come with their own risks, but the right side of the doesn’t have as much responsibility as the left. The right-side pumps to the lungs, the left pumps to the whole body, which means it can put so much more strain on the heart. There are three operations that are involved with this heart condition under normal conditions. The Doctor told us about the series:

  1. The first surgery would be the only surgery baby would be lucky enough to escape. Still, the baby would probably need one of the other two operations. The baby would either need a Pulmonary Banding Surgery or an Artery Shunt Surgery. According to this Cardiologist, if the baby needed surgery, the banding would be the way to go. It looked like our baby would maybe need the banding, but it was still way too early to tell.
  2. The Bidirectional Glenn procedure would be the next surgery around the 4 – 6 month age range. 
  3. Lastly, there is the Fontan. This surgery typically takes place sometime before the child is in kindergarten.

For a better explanation of these surgeries, Mott’s in Michigan has it very well laid out with pictures here.

For the rest of the day, it was a rush of appointments, standard with a high-risk pregnancy. We had another ultrasound (where we got 3-D pictures!!), met with someone in Genetics, a High-Risk OB, and a social worker. The surgeon was the last person we were going to be meeting for the day.

One of our first 3D pictures from our first high-risk pregnancy appointment!
I was so excited, we had never had one before.
Is it normal to only get these with high-risk pregnancies?

When we meet with Genetics, we just went over our family trees. I had previously interviewed both sides of the families to see what kind of health problems were out there. 

With Genetics, we talked about other potential defects the baby would maybe have. There were options on tests we could have done after the baby was born and talked about if we thought any of them were necessary. Jeremy and I both felt that it would be what it would be. It was in God’s hands.  

The OB, Ultrasound, and Social Work appointments pretty much all ran together. Nothing too exciting was talked about at any of these appointments, thank goodness! Our brains were full by this time.

Most of the things that happened at these high-risk pregnancy appointments were what you would expect. The OB included weight, blood pressure, and all the questions. The ultrasound appointments were checking for the baby’s growth along with some fun pictures for us when the baby would cooperate! Social work filled out paperwork with us so we could stay at the Ronald McDonald House after the baby came if needed.  

Then we had to meet with the surgeon. We waited. We waited longer. Then we waited longer! This lady was getting hangry! Finally, we decided we weren’t going to wait anymore. 

I mean, why wait forever just to shake hands and be done?! That had been how most of the day had been. We left and decided we would meet with him later if need be. (Looking back, we were so wrong)

There were three things that I remember about this day of appointments. The first being, almost every Doctor commented on our calmness about the situation. Do not get me wrong, this was a hard situation, but we knew it was in God’s hands. 

The second was the ECHO appointment. This is where we learned that baby for sure did have a heart defect, and it was a severe one. We were naïve enough to think our lives were going to change, but not as much as some people thought.

Lastly, doctors have to offer you the opportunity to abort the baby, several times in fact. We had previously had this conversation and had decided that even if our baby only lived for a few hours, we were going to go through with it. Everyone has had a reason to come in the world, and it seems like the shorter their lives, the more significant the impact.

I have always been an impatient person, but this was the beginning of a change for me. Have you been through something like that before? Was it stressful, or were you able to cope with it pretty well? Did you have to do stuff to pass the time?


Check out the beginning of our story here!