Tuesday, July 21, 2009

Our Life with Numbers

When exactly did so much of our lives start revolving around numbers? We spend so much of our day obsessing over the digits on the monitors above each baby and the weights and measurements on each baby’s chart. Brooke and I both need calculators to do even the most basic math, and now we find ourselves talking endlessly about numbers, numbers and more numbers!

First there’s weight. Each baby gets weighed every night, sometimes around 7 pm, and sometimes not until midnight. We always ask, even though we’ve been told again and again not to put too much stock in the day-to-day weights. What matters more is that they consistently grow from Sunday to Sunday. So it shouldn’t bother us that Charlie is down 10 grams from yesterday, or that Lily was having too rough a day to even be weighed today… but it does.

Then there’s the weekly measurements. Every Sunday night, each baby is weighed and then measured for length, head size, chest circumference, and belly circumference. I’ve started a chart to track their progress and so far they’ve each grown as they should. Lily has made the biggest jump in her numbers from the first Sunday and Annaleigh has made the smallest. It’s interesting to see something like belly size; we can see things like poor Annaleigh’s belly infection, which caused swelling and increased her measurement that week.

And then feedings, which is tracked in milliliters. Charlie is doing well on his 15 ml of breast milk and they’ll be adding the supplement again tomorrow to see if he can tolerate the extra calories. Lily has been reduced to 4 ml because she’s had a lot of episodes today and they were forced to bring her down in hopes of putting a bit less stress on her body. Annaleigh hasn’t eaten in three days now because she’s on medicine to help her GI issues, though there’s no real change on that front today.

Heart rates are pretty standard numbers and all the babies are attached to heart rate monitors all the time. Preemie heart rates are really high, averaging from 130 to 185 beats per minute. Until today, we haven’t seen any of them drop low, but tonight both Annaleigh and Lily decided to have issues and scare us. Generally all it takes is a shake from one of the nurses and the babies will bring that heart rate right back up to normal.

Probably the most important number is the respiration number. A low respiration number means that the baby is taking breaths that are too shallow, and shallow breaths are indicative of major respiratory problems. Anything under 30 is too low. Just like the heart rates, we haven’t had any issues with this for a while—until today. Lily was put on BiPAP today (not because she was doing so well; it was just that they had to extubate her respirator because it got clogged and the doctors thought they would let her try a step down). She’s having trouble adjusting to the change, which is totally normal, and because of that, all her numbers dropped. It was quite scary to watch.

Breathing issues cause a whole gaggle of numbers we need to obsess over. The most basic number is the oxygen percentage. Normal people breathe 21% oxygen in the air (another thing I’ve learned recently). Ideally, the respirators and BiPAP / CPAP machines should be set to give the babies 21% oxygen. This is rare, however. Annaleigh is the most stable and is usually between 21% and 24%, despite the fact that she needs the least help breathing and is only on CPAP. Both Charlie and Lily fluctuate greatly between 29% and 45%. The nurses can control the percentage of oxygen each baby gets with a simple dial attached to each isolette. The reason the nurse would need to increase the oxygen percent is…

The Sp02 percentXXXXXXX. This measures the amount of oxygen running through the babies’ blood at any given time. There’s a small band wrapped around a hand or a foot that somehow produces a number. That number should be between 83 and 93. Too high a number and the nurses say the baby is “over-achieving,” and they can turn the oxygen percent down closer to 21%. Too low a number and they have to add oxygen. But there are different degrees of “too low.” Charlie, for example, often dips down low to the mid-70’s, but he is usually able to bring himself back up without a problem. Lily likes to be more dramatic, as shown tonight when she dipped down into the mid-50’s and scared the crap out of her mommy and daddy. Her SpO2 dropped so low, in fact, that her nurse gave her a full minute of 100% oxygen, which would be dangerous for long periods of time but enough to bring her blood to the oxygen levels she needs. The on-call PA has actually decided to sit with Lily for a while and watch her numbers to get a better sense of what she’s doing. Hopefully it’s nothing major.

We also need to pay attention to her PEEP and Ppeak numbers. The Ppeak is the amount of pressure that the machines need to inflate the baby’s lungs. The nurse explained it by describing how, when blowing up a balloon, the first breath is much harder—that first breath is the Ppeak number. The lower the number, the less pressure is needed and the less dangerous it is for the baby. Luckily, all three babies are at 16, which we’re told is the ideal number. The subsequent breaths into the balloon are represented by the PEEP numbers, which should be right around 6. Again, that’s where all our guys are right now.

With all these numbers, we sometimes get confused. We both carry notepads to write things down on so we don’t get things mixed up. Dr. Hiatt has even joked with me about how much I write down. Little does he know that I have no memory for numbers at all! Without my notepad these blog updates could not exist!

Sorry for the lack of pictures today. Stupid me forgot my camera in the car and was feeling too caught up on obsessing over numbers to go back to the parking garage. Incidentally, it costs $3 to park every day and another $1.50 for Brooke to get a drink from the vending machine on the way out. Don’t even ask what the numbers are in terms of the costs the babies are accumulating in the NICU… thank god the insurance company takes care of those numbers!


Stacie said...

The numbers are overwhelming. It took me ages to convert myself back to pounds once my boys were home. In fact, I even got a scale which could weigh in grams!

Hugs to you. I can't wait for the day that the NICU is a thing of the past for your family.

Stacie said...

Have you checked with the social worker about parking vouchers for the hospital to help ease the burden? Our sw offered us some, which really helped. At the very least, he/she could direct you to a place that could help.

Denise said...

Hopefully today will be a great day for all of you! I would be seeing those numbers in my sleep. Keep the faith.Miss seeing the pictures of those adorable babies. (Travis's mom)

Kat said...

Check with your hospital about parking vouchers. Their social services office should have something available for the parents with children in the NICU.

Newman Family said...

Our hospital had parking vouchers for people who had an extended amount of time at the hospital. You can check to see if those are available to you.

Bec said...

So... did Annaleigh fart or what? The suspense is killing me. :)

Krystal said...

I know it's hard not to obsses over the numbers...we were there once too! But it is important to look at the overall and they all sound like overall they are doing GREAT! And the 'episodes' do stink... but one day things will just click and it'll stop! You two are doing great! Keep asking all the questions you have and taking all the notes you do!

Michele from FTHS said...

Brooke and Joe, my prayers and thoughts are with you five. Keep hanging in there Little D's!!!!!
PS> When we were at Robert Wood with my Dad, the hospital gave us parking passes because he was there for such an extended time. So, like the other postings, this may be available to you, too.

greekgirl719 said...

Hi Brooke and Joe -
I have been following your story through the Nest (SAIF) and just wanted to let you know I am thinking of you and your babies. It's amazing to see how much they have changed in just a few weeks. I love reading your updates and am praying for you every day!


Brian & Crystal said...

Hey ya'll!! It sounds like ya'll are being a great mommy and daddy by being so knowledgable about the little trio! I am so happy they sound like they are doing well!! Please let Brian and I know if there is anything that ya'll need!! I cannot imagine what it feels like day by day but ya'll have such good spirits and amazing teamwork!! You are in my thoughts everyday!!

Andrea said...

You may want to check with the hospital to see if they give out parking passes for parents that have babies in the NICU. Our hospital does, and it really helped out a lot with the cost of parking.

edasmommy0709 from the private board
Twin boys born at 27w6d

Jo Ann at FTHS said...

Hello, Joe and Brooke! Just checking in on you and the little D's. It sounds like everyone, grownups and babies alike, is holding his or her own. I see what you are saying about the "numbers"; it must be near impossible to keep track and make sense of them all on a day-to-day basis, especially for "English" people. Don't you be thinking about transferring upstairs, Joe! Keep in mind what's important in C and E halls: words, emotions, deep thoughts, feelings...they beat out numbers every time. That said, both of you are doing an amazing job on the blog, and I trust you are finding it cathartic as well. I love the pictures! Know that my thoughts and prayers are with you every single day as your journey continues.

Mom2Be said...

Yeesh that's a lot of numbers! I'm guessing that they're keeping track of the babie's hemoglobin, right? (Especially with the blood loss they've been having with all the tests). Hemoglobin plays an important role in carrying O2 in the blood (which I'm sure by now you already know! : ). I'm glad that overall they're improving every week. Sounds like a slow and painful process but it'll be all worth it in the end so hang in there!

Pamela said...

Ask the NICU nurses about parking passes. I had a friend in 4G for 10 weeks and the hospital was able to help out by waiving the parking fee. If the NICU nurses don't know, ask Donna up in 4G, maybe she could be of assistance. Digging up $3 cash is a hassle you guys should be spared.

You continue to be in my thoughts and prayers.