It’s officially the time of year where parents of preemies become hermits. Cold and flu season is beginning which means our trips out into the big, wide world are ending. We’ll be turning down Halloween parties, thanksgiving get-togethers, Christmas festivities and New Year’s parties to keep our babies safe. Where ‘normal’ parents might still be concerned, though not enough to stay away. Preemie parents know the dangers that lurk. A party looks like one of those Clorox commercials with germs squirming on every surface.
Our babies were born 7 weeks early. In that last 7 weeks of pregnancy a babies immune system does a lot of developing. The twins missed out on that. Their immune systems are weaker. They don’t have the ability to fight off infection and bacteria like other children. Their bodies may not even be able to recognize when there’s an infection or virus happening to attempt to fight it. How scary is that?
With Porter’s blood sugar issues, should he get sick we could be in real trouble. If his body tries to fight infection, it probably wouldn’t be able to also focus on maintaining blood sugar levels. We would need to check his sugars frequently and if we could not get food or nutrients in him to keep his sugars stable, he would need to immediately be taken to the ER.
So, you see, it’s not that we don’t want to see you and celebrate with you. It’s just that our babies are far more important than having a few festive cocktails. I hope you can understand. I hope you truly get that we’re not being crazy, over protective parents. We’re being diligent. We’re taking the recommendations of all our NICU doctors to heart, after all these faces are worth it.
How is it possible that my babies are already 7 months old? Closer to being 1 than to being born. INSANE. This is such a fun age. Their laughter is contagious, they’re both sitting up (sometimes) by themselves. They’re eating purees of vegetables which is pretty entertaining.
This is the start to my favorite 6 months of the year. Fall and Winter just make me happy. We took the twins to an Apple Orchard/Pumpkin Patch on their 7 month b-day. We did a little photoshoot but never made it over to the pumpkin side before the skies opened up and it began raining. Slowly at first, just enough time for us to make it to cover, and then a downpour! The babies were in pretty good spirits about it.
I’m really glad to be able to make these memories and start traditions with the babies. I don’t venture out with them often, aside from doctors appointments. It’s just better to keep them away from as many germs as possible. Even though they look big, they’re still my little preemies. Doctors recommend being really vigilant with germs for the first year.
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Porter passed his fast! What that should mean is that he’s cured, because it’s called a ‘cure fast’, but here’s what happened.
We arrived at 1:30 pm. We were placed in a room with a teenage boy. WHO THE HECK PLANNED THIS CRAP? No one. That’s who. Anywho, I was then told I was not allowed to use the restroom that was in our room because the other patient was using it already. I was also told I wasn’t allowed to leave Porter…so…hold it?? I got up twice in the middle of the night to sneak out and use the public restroom and just crossed my fingers that he didn’t wake up and start screaming while I was gone. We also used our Happy Baby wrap and pulled the IV pole and I got to use the bathroom that way. Fun fact: Porter is afraid of the sound of a flushing toilet.
The fast didn’t start until 8:30pm. Super glad I had to be there 7 hours early. So I fed Porter twice and the fast started with his 8:30 bottle. He slept through the night, only waking up with a few little cries around 3am, but went right back out when I gave him a binky. His sugars were checked every 3 hours until it dropped below 70, then every 1 hour until it dropped below 60 and every half hour once it went below 50. He stayed above 80 for 12 hours, by the time we got to his 15 hour check, his sugars dropped into the 60’s. It was a pretty quick dropoff from there on out. On one hand, we were glad that his sugars dropped because we were able to do a bunch of lab work to give us a better idea of what happens. On the downside, we wish that he could’ve maintained his sugar levels for 24 hours, not 12-15. Once we confirmed through bloodwork that his sugars went below 50 (and his ketones were above 3, twice in a row). The fast was over. It was at about the 18 hour mark. The best news was that his ketones went up. The way it was explained to me is that ketones are acids produced when your body begins to break down fats in order to raise blood sugar levels. A baby that was still suffering from hyperinsulinism wouldn’t produce ketones because their body would never start to break down the fats. So this means that he ‘passed’ his fast. His body is starting to do what it’s supposed to, but isn’t yet able to maintain sugar levels for long periods of time.
His new, temporary, diagnosis is ketonic hypoglycemia. That just means his ketones rise too high when his sugars drop too low. We will have a follow-up in 4-6 weeks and should not have to do another fast. We will still be checking his sugars in the morning, but that’s it. After this appointment we may get the all clear. However, this morning his sugar was in the 60’s, the bottom of the normal range is 70. So what the heck?! It, of course came right back up after eating. The doctor in the hospital said he would really only check his sugars if we thought something was off or if Porter was sick. If we went by his method, we wouldn’t have know his sugars were in the 60’s this morning, so no big deal, right?
Today is a big day. A day worth celebrating. Porter has now been home for more days than he spent in the hospital!! 104 days in the hospital and 105 days at home, right where he should be!
The first 3 1/2 months were hard. HARD. But oh so worth it to have this little guy in our lives. He’s so funny and happy. He’s pretty content unless he’s hungry or sleepy. He’s quite the handsome little man. I could just kiss his cheeks all day long! These most recent 3 1/2 months have been a dream.
Ironically, this celebration comes just one day before his next hospital admission. We will be taking him back to CHOP for a fasting test tomorrow through Monday. He’s currently off of his sugar meds and the diuretic that goes along with it. So far his blood sugar levels have been good. They’re on the low end of normal first thing in the morning after 12 hours with no food, but that’s typical. The fast will last for 24 hours. Fingers crossed.
But for now, we celebrate today!
photo by Caroline Snider at wanderings.com
What do you do when you’re formerly amazing sleepers start waking up crying multiple times during the night? Just follow these three easy steps!
- Assess your routine – something must have changed. Different bed time? Less bottles? More solid food? Morning bath vs. evening bath? Oh…nothing has changed? Not. a. thing? Well then, move right along to step number 2.
- Cry – the babies will be crying and so will you. Remember when you felt rested in the morning? Try not to because you will not be feeling that way anymore. Those days are over.
- Try all the things you said you’d never do, find a crutch, whatever it takes.
So the twins have been great sleepers from the very beginning. We had even gotten up to 12 hours between feeds, so maybe 10-11 hours of sleep straight. But all of the sudden over this last week, one or both of them are waking up at least once during the night crying. Maybe it’s teething, maybe they need more activity during the day. I’m not sure what it is. One of the not so awesome things about having twins is that they share a room, so when one of them wakes up in the quiet of the night and starts screaming their tiny little head off, it scares the crap out of the other one which in turn causes the second baby to scream their little head off too. Fun, right? We can usually get them back to sleep in a few short minutes so I’m thankful for that, but what gives?
A few things have changed in our routine, the AC has been shut down and now either use windows to bring in some air or have the heat on during those chilly nights. The babies room has been a bit cooler, so we put onesies and socks on them underneath their pajamas. We bought baltic amber teething necklaces which we put on the babies during the day, but it’s recommended to take them off at night. So maybe it’s random teething pain in the night? I’ve started using our baby shusher to help soothe them back to sleep, though I didn’t want to use that as a crutch at night, but here I am, using it for more than just nap time.
We have AngelCare monitors for under the babies mattresses that will alert us if there is no movement, including breathing. So last night I left their necklaces on. Porter took a little bit to fall asleep but Winter has always been really good about putting herself to sleep. In the middle of the night, Winter woke up screaming. I went in and tried to soothe her without picking her up, but that didn’t work. I turned on the shusher and gave her a swaddle blanket and she went right out. So now I’m that mom who is breaking all the rules by giving her babies a blanket, leaving on their necklaces and using the shusher whenever I can’t get them to sleep on their own. Go ahead, you can judge me now. But hopefully tonight the sleep through the night.
Here’s to hoping things are back to normal soon.