Wednesday, December 1, 2010

Home sweet home ...


Yesterday was the last day of Prematurity Awareness Month and I thought it would be fitting to blog about the day that we were able to bring our baby home from the NICU. It's important to note that just because Prematurity Awareness Month is officially over, doesn't mean that our story stops being told. We've had an overwhelming (and incredibly encouraging) response to our NICU journey and there are a lot of parts we haven't even scratched the surface of yet.

Don't worry... we will continue to weave our NICU history in with our current day-to-day adventures because like so many experiences in our lives- it forms and shapes how we react today.

Anyway, back to the story. As you know, Beatrice Kate spent over 3 weeks at UNC Children's Hospital. Once she became stable enough to be classified as a "feeder-grower" (which I think sounds like I gave birth to algae) she was then transferred to a step-down nursery at Rex Hospital known as the Special Care Nursery (SCN).




Relaxin' in her SCN aquarium
As we've already mentioned, there were a lot of positive and negative things about this transfer. One of the negatives was that there were no primary nurses and in the three weeks we were there, we saw three different neonatologists and a nurse practitioner. This meant that no one really knew the nuances of our baby as well as we did. Sure, we don't have medical degrees or even anything more qualifying than being good Google-researchers; but we had spent the most time with her of anyone we met at Rex. I think that counts for something and as it turns out... it counted for a lot.

After a little over a week, we were told by the first neonatologist that Beatrice Kate had begun her "countdown" of things she needed to accomplish before she would be discharged. More excitingly, in his opinion, we were looking at bringing her home in matter of 5-7 days. We rushed out that night to buy her car seat and other small things we needed to welcome home our baby, finally!

Before that could happen though, she needed to complete a checklist of "preemie graduate" things like breathing on her own, learning to breastfeed, no more As and Bs, no more desats, and (what proved to be the most challenging for her and the nurses) learning to take all her feedings by mouth instead of using her feeding tube.
Doesn't even look like the same child now!

Ah, the feeding tube battle. I could go on and on about the trouble that we had with that pesky NG tube- but I won't. I'll just summarize it by saying that unfortunately, our child liked to take her sweet time while eating from a bottle and busy nurses just sometimes didn't have that time to "waste" on her. So daily, after she would take several feedings in a row by mouth either from breastfeeding or through a bottle, we would get our hopes up that today would be the day she would come home; only to be heartbroken when we walked in to find our baby with her NG (feeding tube through her nose) reinserted overnight.

The following week the next neonatologist informed us that it was more likely that Beatrice Kate wouldn't be coming home until much closer to her original due date. What? That was over 6 weeks away. I couldn't wrap my head around the change in opinions. How could one doctor say she was ready for discharge in a matter of days and another didn't see her coming home for another 6 weeks?

This doctor also worried a lot over Bea's daily weight gains and losses- which I found incredibly irritating. She obsessed over Bea's "very small size" and worried about her "only being in the 2% range for growth". Now, let's clear a few things up first. One: Bea was born small. At only 2 pounds, she was an SGA baby from the get-go. Two: She was born in the zero percentile range... so a jump to the 2% section is leaps and bounds for us. This doctor refused to accept that babies can be different and that maybe, just maybe... differences are okay. She wanted Beatrice Kate to be force-fit into a growth chart and statistic that Bea simply didn't want any part of!

I also had to fight for our right to breastfeed with this doctor. She worried that Bea's attempts at breastfeeding were causing her to slow in her weight gain; even though she was putting on the required 15-30 grams daily (averaged over a week). I'll get into that battle on another day in a blog post about breastfeeding in the NICU... it's too much to contain here.

Anyway it's normal for a preemie to lose a few grams some days. It's also normal for them to gain sometimes suprisingly high amounts overnight too. In fact, the entire weighing process is very subjective. I witnessed the process most every night and was amazed at how many factors contributed to the number on the scale for your baby. As long as over the week or a few days, the baby's weight gain is trending upwards... you should be in business.


Luckily, this terrible doctor was only there for one week and the following week, we were under the care of our final doctor, Dr. Parsons. I knew right away that this doctor was going to be amazing. He reasoned things out, trusted parental instinct and wanted to include parents in their child's care and treated each patient as an individual instead of just a "preemie". It felt like we were back at UNC!

After just a day or two of his rotation, he ordered Beatrice Kate's NG tube out for good. He also instructed the nurses to keep trying with Bea; allowing her the full 30 minutes she was supposed to be given to eat. Also, he put her on a minimal required amount to eat over 12 hours on demand instead of the normal "X mL every 3 hours" schedule. This would allow her some flexibility if she got greedy during a breastfeeding session and made herself too full, and gave her some time to digest before she was forced to eat again. A day after this policy was instituted...

I came in to see Bea and was greeted by Dr. Parsons who informed me that it was looking like we would be able to take Beatrice Kate home that afternoon!! I nearly fainted and could barely get the words out when I called Casey with the news.

Not happy about this test or this car seat
Luckily, because our house had just been put on the market, we had recently hired professional cleaners to tidy up our home and we had purchased a car seat the previous week after we talked to the first neonatologist. We unknowingly researched and registered for the perfect carseat for a preemie- the Safety 1st Air Protect car seat. Seriously, all the nurses in the SCN came by to check it out.

She just needed to pass her "carseat test" (when baby's oxygen saturation is monitored while they sit upright in their carseat for 30 minutes to ensure that they don't have any desaturations or stop breathing) and we could bring her home. While the nurses prepared discharge paperwork, Casey and I had a "last meal without a baby" in the hospital cafeteria.

Six weeks in the NICU and we were finally on our way out. I kept feeling that at any moment we would be called back to the NICU and told that it was just a joke or that they had told the wrong parents that their baby was coming home. I wanted everyone to hurry up so we could get out of the hospital doors and on our way home before they could change their minds. Luckily, they didn't and at around 1:30 p.m. on April 28, 2010... we finally brought our precious, tiny 4 pound, 9 ounce baby girl home.

First time holding her without being connected to wires!
Of course, because it was so surprising (even to us) that she was discharged, there was no typical "fan fare" of family and congratulatory pink ribbon and storks in our yard waiting on our return. It was only us and the quietness of our house as we enjoyed the first few moments as a complete family for the first time at home.

We took thousands of pictures of Beatrice Kate just sitting or sleeping in her chair, with the dogs, being held by Mommy, by Daddy. We were so overjoyed that she wasn't connected to monitors, beeping in alarm over something, being told that we had to put her down so she could rest. She was finally, completely, just our baby.


Next, we'll talk about what it was like in those first few hours and days with an ex-mircopreemie...

3 comments:

  1. Dr. Parsons was on rotation when ours were first taken to SCN. I loved him. He was funny, at least I thought so. Dr. Dunn (not sure if that is the lady you are referring to) was the doctor that discharged us. It seemed like she was there longer than any of the other neonatologists. Did Beatrice Kate ever see Dr. Kicklighter? I never really understood how there rotations worked.

    The feeding tube was the most frustrating thing for us and our daughter. She didn't (and still doesn't) like to be forced to eat when the clock says she should. Once we got a nurse that understood it, we made huge progress. Each day I also told the nurses how important it was for them to try every bottle. I got so sick of hearing they looked to tired to try the bottle. Really?? It still gets under my skin. In their last few days at REX, Kelly really worked with them. If I wasn't there, I also called before and after each feeding to check on the bottle progress. I think they knew I wasn't gonna quit.

    How is Beatrice Kate doing with baby food?

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  2. That's the same issues we faced. Beatrice Kate still, to this day, takes FOREVER to eat from a bottle.

    Baby food is going... well, it's going okay. She's not a fan of anything, even apples and especially not butternut squash. We just tried out sweet potato this week and it's hit or miss. One day she'll eat an entire bowl, others she gags so much she throws up. Next on the list to try is Rutabaga, Pear and Parsnips in the coming weeks. Have yours started solids yet?

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  3. Ohhhhh....rutabaga? I hadn't even thought about that one. I'll have to look for it in my cookbook. Solids are going well for us. C nearly throws her hip out kicking her legs for more peas. O enjoys everything. Pears have been the favorite fruit. It seems that peaches don't sit well with C. She cries all day after them. Which cookbook or website are you using? Do you make a lot ahead of time to freeze? Feel free to email me if you prefer.

    Thanks for sharing your story.

    Amy

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