74 days. For 74 days I drove back and forth to the hospital, leaving my daughter behind. Nothing can prepare you for that. On November 4th, I delivered our daughter, Zoe James, 10 weeks early. It was nerve wracking to say the least. Read The Birth of Zoe James to take a peak into what we dealt with and why ZoZo was born early.
Zoe was born at 30 weeks and 5 days. We were very lucky that she was born on room air. That means she was able to breath on her own and didn't need to be resuscitated or put on oxygen immediately. This allowed me to hold her for a few minutes before she was taken down to the NICU. I've watched babies and kids nearly all of my life but NOTHING, I mean nothing, can mentally or emotionally prepare you to hold a 2 pound baby. It was one of the most terrifying experiences of my life. She looked just like a newborn but so much smaller and more fragile. After she was taken down to the NICU, I didn't get to see her for another few hours. My doctors wanted to make sure I was stable and moved to a regular room before going down to see her.
The first time I was wheeled down to see Zoe, was a tough moment. I held two syringes with literally a few droplets of colostrum to be given to her through a feeding tube. It was the first time I had ever pumped! Once we got to the NICU, my husband taught me the protocol on washing hands. When I was wheeled around to her, I instantly cried. At that moment I realized, I have a second baby, she is tiny, in an isolette and not coming home ANY time soon. I tried to be so strong but seeing your tiny little baby in an isolette, hooked up to all of these machines (an IV, Cpap bubble machine, heart monitor, temperature probe, and more can be quite overwhelming).
I was still on Magnesium the first time I went to visit her, so I couldn't stand, my legs were like jello, my face was hot and it was a total outer body experience. If you've ever been on Magnesium during birth, you know exactly the body changes I'm talking about. The worst part about your baby being in an isolette is that it is such a process to take them out. Needless to say, I didn't hold her my first time there. I simply put my hand into one of the isolate doors and she held my finger for 10 minutes.
Later that day after I was off Magnesium, no more catheter and able to walk, I wheeled myself down to the NICU and saw her again. That time I did skin to skin with her and held her for hours. If your baby is ever in the NICU I highly recommend you do skin to skin (kangaroo) for as long as they will allow you to. It was my favorite time of the day in the NICU, just feeling her tiny body on mine, just us. The hardest day throughout the entire NICU stay and probably life was my discharge day. There was no worse feeling then being wheeled out of a hospital with flowers, It's A Girl balloons and no baby. I only cried 5 separate times on the way home.
The NICU has certain "steps" that they want a baby to complete before coming home; off of oxygen unless your going home on it, maintain body temperature, sleep in open crib, off caffeine/IVs and drink from a bottle. Within four days Zoe was off of the bubble Cpap machine. A bubble cpap machine is a non-invasive way for newborns to receive oxygen. From what I remember preemies lungs collapse easily, so this machine keeps them inflated and doing their job. I was very glad she got off of the Cpap machine because she would get nosebleeds from it.
Once she was off the Cpap machine and IVs Zoe was moved to the step down unit which is called the PICU. This was amazing and annoying. It was a more relaxed unit with only 8-12 beds at a time. When babies are moved down to this unit they usually go home within a few weeks. Zoe went home 2 months after being moved. That was ten times longer then we all expected. Our next task was to maintain body temperature. This one took FOREVER! Being able to maintain your body temperature comes with weight gain. 2lb babies take a while to gain pounds.
Once you can maintain your body temperature, you are moved to an open crib. Zoe was born in early November and wasn't moved to an open crib until the end of December. One day I walked in and while I was washing my hands I kind of freaked because I didn't see her in her isolette. I quickly rushed over and she was in an open crib. Checked off one more requirement from the list. Now the bottle drinking issues began.
Zoe was a very sleepy baby. All babies are sleepy but Zoe literally was awake for about 1 hour a day total for the first two months. Her sleepiness started to concern me. At 34 weeks gestation we started to try and bottle feed. There was no way it was going to work because she could not stay awake. It was a very frustrating process. Neighbor after neighbor would be discharged and Zoe was still there. Thanksgiving flew by, and Christmas was quickly approaching. My husband and I tried so hard to get her bottle feeding so she could be home for Christmas. Sleepy Zoe wasn't getting the hang of it so we spent Christmas in the PICU. Did I mention the PICU doesn't allow siblings under 13 to visit during flu season. Hendrix saw Zoe all of 3 times before she came home. I made it a point to always tell him, mommy has to bring milk to Zoe. At 3 years old that was just enough for him to understand. Mommy feeds me and she needs to feed Zoe too. Hendrix was very involved in pumping. He was very helpful, understanding and patient when I would have to pump around the clock, interrupting our playtimes and normal daily schedule.
At 39 weeks Zoe was still very sleepy. She would only drink 5ml per feeding before falling asleep. During that feeding time she would make this high pitched noise and gag on the bottle nipple. They tried Dr. Browns and hospital bottles with no success. I knew the high pitched noise was not normal and requested that her primary nurse have the neonatologists look at it further. After about a week of her primary and I advocating for her and being very persistent, Zoe had a chest ultrasound, bronchoscopy and swallow study. Turns out she had Laryngomalacia, floppy tissue that was falling over her airway. The swallow study also showed that she did not have reflux which they thought she did. She was immediately taken off Prevacid.
Her due date, January 8th, was approaching. Around her due date she finally started waking more but still was having such a hard time eating. At 40 weeks we started discussing Gtubes. Our NICU wouldn't send babies home with feeding tubes but instead would place a gastrostomy tube. On January 11th AJ came home from visiting Zoe late one night and happened to talk to one of the Neonatologists. He said that we should discuss with one another her getting a Gtube and put the consoltation in on Monday for her surgery. She didn't seem like she was going to wake up enough to eat, so they were recommending that she receive one.
As a last ditch effort, the next day I brought in MAM bottles. I figured it can't hurt to try something else. She seemed to be having such a hard time with the Dr. Brown nipples, lets try something else. That was it! That night she drank a full bottle (60mL) and continued doing the same for the next 2 days. On Monday, the day of her Gtube consultation I was there during morning rounds. The doctors, specialists and nurses, talked about Zoe and her progress. They cancelled her gtube consultation that was scheduled for that day. They all applauded and were shocked that not only did she snap out of it and have more alert time, but she was taking full bottles. And just like that, the next day we took her home!
Survival NICU Tips:
*Be there as much as possible
*Ask questions- no question is dumb, its your baby, you are allowed to be involved in all of the decisions.
*Pump if possible. Zoe had my pumped milk but in the beginning had donor breastmilk and at the end had formula to see if thats why she wasn't taking bottles.
*Be there for rounds if they'll allow it. This gives you a chance to truly hear how your baby is progressing and can ask the neonatologist questions.
*Try to be there for shift change so you can see both nurses taking care of baby for the day. My favorite time to go was 5am, its quiet, she's awake, get to see night nurse and shift change was at 7am so I saw both nurses.
*It's the little things that count. Zoe was there during the holidays so I made a holiday basket for all of the nurses to take goodies from. I spent probably $30 from the dollar store on goodies, water bottles, fans, gum, granola bars, etc
*Don't forget to take care of yourself whether that's taking a day away from the NICU, having a date night or a manicure. You can't take care of others if you haven't taken care of yourself.
