1/2 of My Heart Was Home, 1/2 Was Still in the Hospital
On this particular day, I walked into the NICU to a nurse quickly giving Gracie CPAP over her mouth and nose to bring her heart rate back up. Gracie had a way of scaring us multiple times. in fact, when I would call from home I would get updates of her dropping her sats. She had a tendency to stop breathing (apnea) and dropping her heart rate extremely low. This in turn set off alarm bells louder than a fire station. The nurses explained it as she basically forgets to keep breathing. While this was a somewhat normal preemie baby thing to do it did not sit too well for me.
I was able to finally try and breastfeed Gracie which was a very special day. I was breastfeeding Paisley daily and loved the bond it gave us. Naturally, I had the entire lactation crew in the room with me watching as I got Gracie to latch. One sat with me for a while until Gracie started to choke on my milk and stopped breathing. She turned a grayish-blue color and the Lactation consultant ripped her out of my arms and put her into her isolate as the nurses rushed in. They put the infant oxygen mask over her nose and mouth and her numbers climbed back up.
My heart nearly fell out of my body during this event and I remember feeling like I was going to vomit. Here I am in all of my glory, boob out, in front of the NICU doors to Gracies room. Obviously, this was the last thing on my mind but definitely not helpful whatsoever. I was terrified from here on out to feed her.
What if she did it again?
The truth is, she would do it again, and again, and again until she had a healthy functioning heart or she grew out of it. I only was able to breastfeed Gracie 2 times. To this day I will cherish those few moments I had with her. I started bringing in some items that would help Gracie feel comfortable and to keep from me having to lose time with her. For example, I had to pump every few hours. Since I was not breastfeeding Gracie I always had to pump when I was with her and that meant not being able to hold her for 45 minutes or so. Yes, it takes that long by the time you get all of your parts together and get yourself hooked up to the machine like a cow.
The best pumping bra of all time is the Medela pumping bra!
The only actual picture I have breastfeeding Gracie!
Therefore, when a company says you get a 15-minute break to pump at work it’s complete bullshit. There is NO CHANCE you would be able to completely pump in 15 minutes. If this is the case for you I highly recommend the Elvie or the willow, but do not get me even started on this topic…
I brought in one of my absolute favorite products the boppy lounger, not these have actually been taken off of the shelves so the next best thing is the Laplaisir baby lounger which is currently on sale (20% off!) for Cyber Monday on amazon!
I would put Gracie into this and lay her on the couch as I pumped, that way I could interact with her while I was pumping, and I no longer would lose time with my baby!
Gracie was slowly growing but not exactly at the rate we wanted, therefore once she hit 6lbs they decided that they were comfortable enough to schedule her PAPVR surgery repair. She also was finally off oxygen! They believed a lot of this was due to her prematurity and she simply needed to grow and mature her lungs.
While I was relieved that the day would finally come I was still really scared that she wouldn’t wake up from anesthesia. I am not sure if this is a normal response of loved ones or not but it was such a serious fear of mine.
Were we pushing for surgery too fast? If we wait will I get more time with my baby alive? These were all questions rolling around in my confused and shattered brain. Meanwhile, during this time Paisley was getting closer to coming home. Or so we thought…
Paisley had been off of all oxygen for weeks now and was simply in the NICU to grow and learn how to feed. She was starting to breastfeed like a champ and take her full bottles when I was not able to be there to feed her. I tried to work around her feeding schedule to always be able to breastfeed her 1-2 times a day. Sometimes I would go feed her, then spend time with Gracie and turn right back around to feed Paisley one more time before heading home.
It drove me insane to spend time in my car, and the fact that I had to pump so I would use car time to pump with my Elvie! Again, I felt like I was wasting time, time that could be spent with my girls. Mom guilt is so REAL!
We were about to bring Paisley home when she had bradycardia. Every time she had one of these she had to stay 5 more days. This happened MULTIPLE times. I was beyond myself at this point. Paisley passed her car seat test with flying colors, she needed nothing more than to not have a Brady! I cannot even tell you the amount of stress I was under. I flat out told the nurses and doctors that I was taking my baby home. I didn’t care how it was going to happen, but it was happening and they needed to figure it out!
They figured that she was having reflux from my breastmilk being too thin since a baby's epiglottis is not fully closed at this time so they switched her over to a thicker formula. They understood my frustration especially with having Grace at Children’s hospital about to be scheduled for her heart surgery so they decided that Paisley could go home on a monitor. I WAS TERRIFIED! While I was so excited to bring my girl home, I was so scared that something would happen and that it would be my fault.
They got everything set up, my husband and I did our CPR test to prove we could perform it on Paisley if need be, and the heart rate/oxygen monitor rep came in to show us how to use it. It was pretty easy and straightforward to use (which was a relief). This was a very long hour of learning and getting ready to run out of the doors with our little girl. I’m not even kidding about the running part.
On this day I was not able to go see Gracie and the mom guilt CONSUMED ME. I missed her every second I was away from her and I was so concerned she was missing her mom too. Luckily, I had a friend who worked in the NICU and promised she would go in and hold Gracie. In fact, I did not even need to ask her, she text me to ask me if she could! I was so thankful for her, and I still am.
I put Paisley’s leads on her chest, and her little foam band around her that was attached to the monitor, dressed her in her going home onesie and we put our newborn baby after 42 long excruciating days (May 23, 2020) in her car seat to go home.
We did not tell anyone previously that Paisley was coming home, simply because there was always the chance that she was not ready yet. I was so tired of people asking “when are the girls coming home?” because I truly did not know when and it just hit me straight in the heart each time.
I also had not made it known to anyone other than my family and friends that Gracie had Congenital Heart Disease. I’m not sure why. All I can think is that I just was not ready yet to face the truth. If I said it out loud then it would be real. But it was real, too real. I also did not want my phone flooded with text messages of nosey-ass people asking what was wrong with my perfect baby.
We finally got to the car with a nurse following us out to make sure we hooked the car seat up correctly and we had no idea how to get the car seat into the base. We clearly did not practice this part. It was actually comical watching my husband struggle to get the base into the car correctly. Finally, we had it all together and put Paisley in the car for the very first time. I sat next to her the whole way home as my husband drove 10 MPH under the speed limit (LMAO).
I text my parents to let them know that Paisley was on her way home and I kid you not my parents almost beat us to my house. I am so glad they were just as excited as we were to see their brand new Granddaughter, and I was not surprised whatsoever how invasive they also were! (LOL).
These are actually Tims parents above!
In came “It’s a GIRL” balloons, and my heart was so happy to see them holding Paisley. But the other half of my heart was breaking knowing that Gracie was not coming home soon like her sister. We were told the recovery after PAPVR surgery would be anywhere from 7 days to a month. However, that would not be the case for Gracie. In fact, it wouldn’t even be within the same month that we brought her Identical twin sister home.
Everyone was curious of our new member of the family!
My Heart Warrior Collection is officially up and ready for orders! As most of you know this is a very important part of our story.
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