how I wish, how I wish you were here.

The boy is getting so much better, it's really amazing. Yesterday he managed to graduate from that big CPAP mask to a nasal cannula, and his feeding tube is now in his nose. His bed switched from the big, weird warmer bed to a regular little bassinet. He is being tested with mouth feedings, though he hasn't gotten the hang of it yet enough to get rid of the feeding tube completely. he has started with a bottle of breast milk several times a day, and we will attempt a latch on for breast feeding in the morning. The boy and I even had some skin to skin time this today, it was great. All medications are finished now, except for a small amount of oxygen. Mostly he is being monitored to make sure his organs can handle everything, and his platelet count is being watched. Once he can handle exclusive mouth feedings, then we are closer to discharge time! We don't know when for sure, but we hope to have Luka home with us by next week. Wish you were here with us, little man.

I am more than excited to have Luka well enough to come live with us, but now that his health is improving, I have this fear that once he comes home he will get sick again. What if we break him? Hell, I almost broke him getting him out of my uterus. What makes me capable of taking care of such a delicate little creature? If all it takes is love, then I've got it under control. But I'm afraid it takes some actual skill, too. I hope I can handle it.

a whole lotta love for a tiny little boy.

Luka continues to improve day by day. He is now off of all his sedation and anxiety medication. That's super exciting, though it makes visiting him a little more frustrating because we have to be extra careful not to stimulate him too much. If we talk to him to much, or touch him too much, his heart rate gets too high and we have to back off. Nurses keep scolding us for stimulating him more than we mean to. They let us wipe his mouth (it gets foamy because of the feeding tube), but then fuss at us for wiping "too much". Sometimes all we are allowed to do is sit and look at him. Yesterday they did allow us to hold him for a few minutes, and overall he tolerated that well. For us, it was so awesome.





I pretty much cry like a crazy person the whole time we visit him. It's pretty embarrassing. It just so stressful to have him there, hooked up to machines and having other people take care of him. But whatever it takes to make him well enough to come home.

The CPAP mask looks worse than it is. It's definitely a step in the right direction from the ventilator tube he had, though the mask covers up his darling little face.
He's foamy because of the CPAP and the feeding tube.







I can't wait until he's stable enough for us to interact with him more without disrupting his heart rate too much. Then he can have family visits, too. His next steps are to get rid of the CPAP mask and graduate to a nasal cannula, then attempt mouth feedings. Exciting!

Luka's first week on earth.

What a rough little life our Luka has endured since his birth early Sunday morning. PPHN is why he is in NICU, and it almost took him from us before we could even become properly introduced. But I am happy to say that as of now on day six, Luka's situation has greatly improved. He has been weaned off of all three different blood pressure medications, and his oxygen level is down to 23%. He is now slowly being taken down on his nitrous oxide, and he is finally being given some of my breast milk through a feeding tube. His next goals are to be switched off of the ventilator and on to a CPAP, which means he will need to work harder to breathe on his own. Also, his narcotics are going to be taken down as much as he can handle in order for him to be less sedated and be able to move around just a bit. He's pretty puffy and swollen from edema, which is because he hasn't been able to move. Once he moves around, his puffiness should decrease. And maybe we will finally be able to see him with his eyes open soon!

Ken and I have been able to lightly touch him, and quietly talk to him. He grips our finger in his teeny little hand sometimes, and my heart melts. Sometimes the nurses let me change his diaper, which is amazing. I want so badly to scoop him up and take care of him, I can barely stand it. If all goes well, we may be able to hold him in just a few more days. They have told us it will need to be brief, but we'll take it.

We are trying real hard to manage our expectations, and take his progress day by day. Every small step closer to healthy brings us joy. It's difficult, but we are trying not to focus on any of the potential long term problems this may cause Luka in the future. Will he have developmental delays, hearing loss or neurological problems relating to this? Only time will tell. Some PPHN survivors do, and many don't. We just want him alive and in our arms first, then we will deal with the rest when it's time to deal with it.

As far as me, the c section incision is painful and healing too slowly for my taste. We drive to the hospital to see Lu twice a day, and riding the 30+ miles one way in the car is a bit much for the soreness. I'm pumping milk every three hours, so I basically pump, sleep, eat, cry, rest, pump, sleep, cry, etc. Ken has been amazing taking care of me, driving us to the hospital, taking care of our business, and still finding time to work so we don't lose income. He's an awesome guy, for true.

All of our friends and family have been so full of love and support during this time, thank you! I know I haven't been personally in touch with a lot of you, but it's only because I feel really fragile right now. We still appreciate your support and I promise to be in touch when I can. Much love to you all.

36 weeks: the pregnancy ends, and things get real.

Remember my last post about lack of fetal movement? Things just got crazier after that. On Saturday evening I called the nurse line and after some basic "drink juice and lay down" tests to try and get fetal movement, they called me in to the hospital. The fetal monitor picked up Luka's heartbeat right away, but his movement wasn't getting the response they wanted. Within five minutes of the doctor checking the monitor results she says, "this baby needs to come out now". I didn't even have time to think about what was going on. A flurry of nurses and doctors had me on a stretcher and signing consent forms, and I was off for an emergency c-section. At 12:49AM, Luka John Joseph Saluzzi entered the world one month too soon.

My placenta was calcified, so it was no longer sustaining the little guy. If we had not gone to the hospital right then, Luka would have been dead in the womb. When they first went to Ken after my surgery, they told him that Luka was just fine, only small at 4lb 5oz. But they quickly came to the conclusion that he is a very sick little boy. Primary Pulmonary Hypertension/Persistence of the Fetal Circulation (PPHN) is the name of his disease, and why he is in NICU, and will be for at least 2-3 weeks. So far he is "stable", but his situation fluctuates from hour to hour. We've been told that this is expected. He's on lots of medication, IV fluids, and oxygen. We can't hold him at all, and even talking to him is discouraged right now because it could excite him. It is truly heartbreaking. I wish we could get some more hopeful news, but the most they can give right now is that there have been babies in the NICU with more severe cases of PPHN who have pulled through.

We are just happy to have him alive, even though this is a really scary time right now. We want little Luka to be okay and come home with us as soon as possible. When people congratulate us, we aren't even sure how to respond. It just hurts so much. That's the story right now, y'all.  I'll update when something new happens.

36 weeks- the week I freak out and assume the worst.

So, yeah. It's freak out time for me. I knew it would happen eventually. Fetal movement has really changed over the past few days. It's getting more difficult to feel the kid kick, and I have read that this isn't uncommon simply because he is getting bigger and running out of space in there. At my appointment on Thursday, I had to stay on the monitor for two solid hours because he wasn't moving! The heart beat was fine, but movement, no. The nurses would keep coming in to check the progress and give me these vague, "Hmmm... must be sleeping" comments with a certain tone in their voice that said, "must not upset the pregnant lady". He did eventually give them some movement, but not as much as usual. The doctor checked for breathing on the ultrasound, and that was good. He just told me to keep good track of my kick counts until my next appointment on Tuesday. The thing is, kick counts are getting more and more difficult because he's not moving as much as before. Yesterday morning was no movement at all, with a few wiggles coming in by late afternoon. I finally got some stronger movements around 10:00pm last night. Now it's Saturday afternoon, and he finally gave me a tiny wiggle a minute or two ago, after much stress. I even ate some vegan caramels to see if the sugar would wake him up, though of course I'm not supposed to eat sweets with the diabeetus. I'm just not feeling him move enough to not be completely worried.

The internet tubes are clogged full of frantic women posting on various pregnancy websites about decreased fetal movement around 36 weeks. Many folks say, "Oh, this happened to me too, it's fine!" While others are all "OMG, stillborn!". So let's just say Dr. Google is not my friend right now.

I'm gonna go now and drink more water, poke my belly and try not to go insane before eventually calling the nurse line.

35 weeks. or, I live at the doctor's office now.

A fetal monitor on the surface of planet belly

35 weeks today, and all is well. Going to the doc office twice a week seems a bit much, but the kid must be monitored since I'm on a low dose of medicine for the GD. The fetal monitoring can take as little as 20 minutes to get a reading they need, but yesterday they left me in there for over an hour because they "forgot about me". Considering they "forget about me" a lot (I think they really just overbook patients), I'm perpetually late to work on doctor visit days. It puts me way behind for the rest of the day and stresses me out, but I'm trying to chill a bit because I know that I can't control these things. Also, when the kid is here my time will be even less my own, so I really need to let go of some of that need to control everything around me. Shit happens, and I best learn to deal with it.

We managed to clear out the home office to make way for a little nursery, and this has made me feel way better. We were not able to get things accomplished for so long that I was worried the kid would have to sleep in a laundry basket at the end of our bed or something. Now he (almost) has his own space that's clean, tidy and baby-friendly. Ken's kind and generous parents even purchased Luka a crib as a gift, along with a play yard. So nice! I'll post some pictures once we have the room all finished. Tomorrow is our baby shower too, so that should be lots of fun.

Let's see- what have I accomplished this week? I scheduled a breastfeeding class for the week after next, I turned in our pre-admission paperwork for the hospital, and we chose our pediatrician. Things are falling into place, it seems. But do I feel ready for Luka's arrival? Not just yet. But soon, buddy. Soon enough.

34 weeks: calling Dr. Google.

Image from The Bump. Are honeydew melons really 5 lbs?

My first week on Glyburide went pretty well. It really did help my fasting numbers, though I still had a couple of high ones. The midwife thinks that another week or so everything should start leveling out. Yesterday's appointment was the start of my twice-weekly non-stress tests, and that was a little slow. Normally it should only take about 20 minutes, but our little kid decided it was time to sleep while I was hooked up to the machine. They need a series of fetal movements in order to check his heart rate reaction, and he just wasn't moving at all. I was poking at him, shaking my belly, using all the tricks that normally work to get a wiggle or two, but nothing. So finally after almost an hour on the machine, the midwife brought out a buzzer and put it to my belly. When she buzzed him, he kicked the shit out of me! Poor guy. There he was- just sleeping comfortably in his own little warm fluid pouch, when out of nowhere a giant buzzer goes off and scares the piss outta him. I apologized to him, but I was really glad he decided to move around after that. The results were fine, so we moved on to the amniotic fluid check.

They check the amniotic fluid via ultrasound by measuring the length of fluid pouches they find. Too little fluid is bad too, but with me they are keeping check for too much fluid, which is common with diabetics. My fluid count was 18 cm, which the midwife calls "a little on the high side". I asked her what could happen with too much fluid, and her answer was very nonchalant. "Oh, it could make you go into preterm labor". Oh. Okay. Is that all? She ran the number by the doctor on staff that day, and they didn't seem too worried about it. But I, on the other hand, tend to turn to Dr. Google in times like these. Am I saying this is a good idea? Well, no. Not unless you enjoy needlessly worrying yourself into insomnia. Teh Googles told me pregnant ladies with too much fluid (called polyhydramnios) have all kinds of troubles that could happen, from early labor to cord prolapse, placental abruption, and severe bleeding after delivery. But it also turns out that 18 cm worth of fluid is not that high. Not enough to freak out about, anyway. Especially since they are monitoring me twice a week, and my blood sugar is back in control. So I'm trying not to stress too much about it.

Remember when I whined and complained about not sleeping well in my second trimester? Well forget all that shit. Third trimester is the real deal, I'm telling you. I'm exhausted, yet I have to get up an average of four times each night to pee. Acid reflux is so bad at night from my stomach being pushed damn near my throat by the kid, that I have to sleep with my head on 3-4 pillows all Princess and the Pea style. Even then I still wake up with my throat on fire. The carpal tunnel is still there, but I'm kind of used to it by now. My fingers are always numb, even during the day. I don't even notice the wrist guard at night anymore. Oh, and let's not forget all the fluids that build up when I'm horizontal. They keep my sinuses stuffed until morning, and turn me into a drooling mouth-breather. Ken's a lucky fellow, let me tell you.

But of course there are good things going on, too! My belly is so round and jolly. I just love it. And I can't get enough of the movements Luka makes, from the little tickley wiggles to the huge, alien-like kicks that can be seen through my shirt. It's so cool. We don't have the nursery set up quite yet, but we're getting there. Hopefully in the next week or two the kid will have a room of his own.