Bea: Part 2

Click here for Bea: Part 1

These two posts are edited versions of my journal from the end of November until the middle of December.

 

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Friday, December 2nd, 2016

I started pumping Friday morning. The pump the hospital provides looks like something out of a steam-punk graphic novel. It weighed 75 pounds and had steel parts encased in a glass dome. It looked like it would suck the nail polish off my toes if I turned the dial too far! I was able to get a decent amount of colostrum immediately, but dried up on Saturday.

Bea’s white blood cell count was in the 40,000, which is really high for a newborn, although it doesn’t necessarily indicate anything bad. She was put on a CPAP machine, and started TPN.

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Bea on CPAP. I found the Minnie Mouse figure in the bottom of my purse. We gave it an alcohol bath so she’d have something from her sister in the NICU. Her diaper was a newborn size, folded down twice to fit.

Saturday

At our request, I was able to check out on Saturday. I just wasn’t able to rest in the hospital; between the nurses coming in and out of the room all the time (plus my “friend” in housekeeping, who barged in while I was pumping— she walked right past Asa who was blocking the door and said “Oh she won’t care, we’re friends”).

Asa and I had to drive all over town that afternoon in the rain to pick up parts for my pump, since I wasn’t able to get any of the new supplies beforehand. I pumped every three hours and I didn’t get a single drop of colostrum that day.

The nurse told me that all they needed was just a little amount and that they were just swabbing her cheeks with it, so they were fine with the amount I had pumped in the hospital.

Sunday

A new nurse was on that day. She told me that the doctors wanted to feed Bea but didn’t have any of my milk, so they were unable to feed my child due to my lack of milk (This was our first experience with how the plan of care is totally dependent on who the attending is at the time). She said that she knew I had other things going on in my life, but that I needed to prioritize and pump as much as possible. I wanted to slap the nurse. What else did she think I had been doing?! I had just been told the day before that the 1/2 mL I had given would be more than enough.

I was completely devastated. As I stood over Bea’s incubator, tears running down my face, I looked up to see the grandmother of another NICU baby motioning me over to her. She enveloped me in a hug and told me that it was going to be ok. Her daughter had had the exact same issue I was facing, but her supply came in 12 hours before, and she was now nursing her baby. My mother walked over and we all cried and hugged again; complete strangers, and yet bonded by the NICU.

Mom asked me what I was craving, which resulted in a trip to Smoothie King, the liquor store, and Krispy Kreme. I came home, drank two glasses of wine, ate a plate of pasta, and my milk came in that night. I went from producing 3 mL/session to 50 mL. I’ll never see Krispy Kreme donuts without thinking of Bea, now… I ate two dozen in about four days.

Monday (12/5)

Bea was taken off the CPAP machine and did great. They increased her feedings to 3mL/3 hours, and I got to hold her for the first time while she was still in the incubator. They were keeping the humidity high to keep her warm, so I had to wait until the humidity was at room level before I could hold her outside of the incubator. It seemed that the leads and wires attached to her doubled her weight; I had trouble weaving my fingers through all of them to hold her.

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The tube inside her mouth is an OG tube; the nurses would use a syringe to squirt small amounts of milk down it to feed her. The goal was to move to an NG tube (through the nose) once she was old enough to have a swallow reflex. Then, I would be able to attempt bottle feeding her and they could still get her milk through the NG tube.

Tuesday

She was still doing really well off of the CPAP. Looking around the room, it really made me appreciate just how well she was doing. She was four days old and was already breathing without a ventilator or CPAP, and she was tolerating feedings. Those seem to be the big milestones that can take a long time for babies to get to.

Wednesday

Asa came up to visit Bea; we had some concerns about the doctors putting in a PICC line. It’s much more invasive than a regular IV, and they needed access for the TPN. She had an umbilical line placed the day before, but it was going to dry up soon. We told the doctors that we gave our consent if she needed it, but that it was a point of concern. The attending called us that night to discuss a plan of action and why the PICC line was important, even though it could mean she was going to be susceptible to possible infection after it was placed.

My husband took me home to Brookhaven so that I could get my car and pack my own clothes, since I had been living in things that either he or my mom brought up from the house.

The reality of everything hit hard when we drove back into town. Since moving there, I had found a routine and everything had been so simple and uncomplicated. What had happened over the past ten days was so out of left field, and so unexpected, that I didn’t have a frame of reference for it until I came home and compared it to what things had been like before.

Thursday

I arrived mid afternoon to the NICU and Bea didn’t have any extra wires or tubes attached to her, which was odd since I assumed they had placed the PICC line the day before. Turns out that a new attending had rotated on that morning and the residents told her that we were concerned about getting the line placed. She ran the numbers and said that a PICC line really wasn’t necessary, since they were planning to decrease the TPN in a matter of days!

Bea’s feedings were up’d to 9mL and they continued to lower the humidity.

Friday

I got to the NICU right when they were rounding on Bea. Everything was continuing to look good. She was officially off the humidity. The attending asked if I wanted to hold her! My husband was coming into town for the weekend that night, so I told her that I wanted to wait until he was there. She still needed to get her umbilical line out, so they asked to wait until after 5 pm. We went after dinner. The nurse handed me Bea like she was a puppy- one hand cupped under her bottom, the other wrapped around her torso. She slept the whole time, and I wasn’t able to get to see her face because she was placed so far up on my chest, but it felt wonderful to hold her.

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Saturday

We met Maggie, Mike, and Gracie in Grenada at a burger place. When Gracie first saw me, she called out and started running towards me… and then face planted right at my feet. I hadn’t seen her since I left for the ER almost two weeks prior, and I didn’t know when we would all be under the same roof again.

It was wonderful to see her, although she told us to “go home” several times. It’s all rice cakes and manual labor at our house, apparently. I sobbed when we left her; she was too busy playing with the stuffed animal she had won on the claw machine.

I kept telling myself that she is too young to remember any of this, but it didn’t make being apart in the Christmas season any easier. I had been looking forward to this time of year with Gracie and being in our new hometown so it been hard to have all my expectations unmet.

Sunday

Bea was up to 24 mL/3 hours and officially off TPN. They still supplemented with some other concoction but they were also able to remove the IV they placed on her head, which meant I could hold her again. The nurses said that she was very alert earlier that day and they would walk by the incubator and she would just be looking around at everything. I’ve yet to see her really alert so I hoped I would catch her at the right time soon.

Monday 12/12

I walked into the NICU with my heart in my throat. It  was the tenth day- which meant that Bea was having her brain scan. It’s quite common for premature babies to have brain bleeds. There are four levels- one and two are usually fine; they resolve on their own and there isn’t any lasting damage because of the elasticity of the brain. A level three or four is worrisome; while sometimes they can resolve on their own, there is a higher chance of damage.

A dear family friend had sent us several blankets for Bea that were similar to the ones that Gracie sleeps with every night. We placed a bee-themed blanket on top of Bea’s isolet to give it more of a “homey” look in the NICU. Everything is so uniform and sterile that it helps to have something from the outside to remind you that there’s going to be more to your child’s life than being in the hospital.

The blanket also helps you spot where your child is- there are roughly 50 spots on each side of the NICU. So, on Monday, I walked to where her bed was and noticed about 50 feet away that the blanket was missing, and then got closer to find her bed completely empty. I was a basket case already, so I just stood there and started babbling to the closest nurse that I needed my child, that I couldn’t find her, where have they taken my child. I’ve always newly-empty hospital beds with death, so I was trying to fight off the completely illogical fear that something had happened. As the nurse went off to talk to the charge nurse, and I turned and spotted the black and yellow blanket across the room in a back corner. IMG_2943

I was able to calm myself down in time for the fellow to update me on the brain scan- everything came back normal. She said that if weren’t for Bea’s gestational age, they would move her up to the transitional nursery.

 

December 12th is the last entry in my journal. The stress of the situation and my lack of energy caught up with me, and I wasn’t able to sit in front of a computer without crying. So, I can’t remember the last four weeks in the NICU with as much detail as the first three. Thankfully, I have some pictures, so I’ll finish Bea’s time in the NICU with those.

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December 29th: Her NG tube was placed in and they were beginning to bottle feed her. Her hat was a preemie-size hat that said “My First Christmas”.
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January 2nd: This is the last picture I took of Bea at UMMC. She was in the transitional nursery and I was sending this to my husband to show the umbilical hernia. He quickly informed me that they are completely normal in preemies and that he would “keep an eye on it”. She still has it (it’s actually REALLY large now) but since her dad is the one we’d see to get it fixed, he just pokes at it once a week. If it doesn’t reduce on its own by the time she is 2 years old, she will need surgery.
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Bea arrived at our home hospital shortly after the new year. Often times she was the only baby in the nursery, which was a HUGE change from being one in 75 babies! Her bed was right by the observation window, so she had a constant stream of visitors checking on her throughout the day. This was taken while her daddy gave her a bottle for the first time… there was a crowd of about 6 people watching him (and documenting it for me while I was with Gracie!).
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January 12th, 2017: After 42 days in the NICU, Bea came home! And this picture of Gracie offering Bea an orange just about sums up our homecoming.
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Bea at one day old, and Bea at 15 weeks old. She weighs 3x her birth weight (9 lbs) and at almost four months, is FINALLY fitting into her newborn clothes. The doctors say she will more than likely be developmentally delayed until she is two years old, but there are no lasting effects of her early birth date! Praise the Lord.

3 comments

  1. Sarah, I so relate to you looking for your baby in the NICU.. My niece delivered twins at 28 weeks ( they will be 15 next month) here at River Oaks Suites. They live in Lexington so I was only in town relative!! I went every day to NICU and it was so scary when they weren’t in the same place as day before!! Glad Bea is doing so well!!

  2. She is totally adorable. I’m so happy there is a new “BABY BEA” in town now that that my “BEE” is not a baby anymore! REJOICING in her health!!! What a blessing. ❤

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