PICC – Keeping up with the Hoffmans

NICU day 6

May 24, 2016August 6, 2018 Keeping up with the Hoffmans

It’s 10 p.m. and I’m settling into my evening routine of pumping one last time before bed and recapping the day. I don’t know whether I’ll keep doing daily updates — I’m kind of hoping things get more boring at some point, but for now there are still a fair number of changes each day so here I am.

I spent the night in the NICU last night, after tucking T into bed. Overall, we had a good night. The lactation consultant said I was doing so well with my milk production that I could drop to every four hours at night as long as I was still pumping every two hours during the day. Sleep is good! I did wake up once to Emmett crying, but he is so quiet I can barely hear him and I have no idea how long he had been crying. This isn’t something the nurses monitor unless it sets off his alarms, or he’s loud enough someone hears him from the hall. But since I barely heard him from six feet away, it really made me glad D and I have been making sure one of us is here at night. By the time I woke up and got to E he had worked himself into such a frenzy that he temporarily stopped breathing and his heart rate dipped, setting off all the monitors. He recovered, but those episodes are always a little unnerving. The rest of the night was fine, though, and I think we both slept pretty soundly.

After yesterday’s PICC line removal, the doctor attempted to place a new line today, but couldn’t get it in and so we had to go back to IVs. It was disappointing, but he felt the IV was doing a sufficient job for now, and didn’t think it was urgent enough to force the PICC. He said if they got really desperate they could go in through his groin, but that that would be a little more invasive and not as comfortable for him. To make up for the lack of fluids we would send through the PICC (the IVs don’t handle quite the volume), they decided to increase his breastmilk feedings from 1 ML to 3ML (still every three hours), one day ahead of schedule. He has handled the increased feedings like a champ and was moving everything through his stomach fine, but it still wasn’t coming out the other end. So they gave him a suppository this morning, and another this afternoon after no progress, and he finally had a good poop around 8 p.m. I’m told sometimes their immature little systems just need a bit of a nudge. We’re hopeful things move as they should from here on out.

The great news is that he’s finally starting to gain weight, after pretty steadily losing over the last week. Even after that big poop, he is up 10 grams, so we’re hoping the increased feeds will help him continue to grow and that we’re on the upswing now (even for term babies, it’s normal to lose weight after birth).

His bilirubin levels were a little high again so he went back under the lights this afternoon. They’ll test again in the morning to see if he can come off them.

I got to hold him again tonight, but this time only for about an hour, since he needs to spend as much time as possible under the bili lights. It was still wonderful, but I’m hoping to get a longer hold tomorrow.

Some volunteers from a NICU parents support group stopped by tonight, so that was nice to talk to someone who could relate. The group is run by moms whose children are NICU alumni and they visit every Tuesday. I think this group will probably be an important resource for me. Almost a week later, the shock of what happened is just now starting to wear off, and I think I’m coming to grips with just how long and difficult of a road we have ahead of us. In a quiet moment by myself this afternoon, I suddenly found myself crying out of nowhere. I’m sure the postpartum hormones don’t help, but I’m also feeling a lot of guilt. Guilt for even mentioning in my last pregnancy update post that I was “over pregnancy” and “ready to meet my baby.” (I swear, I didn’t mean RIGHT NOW!) Guilt for not going into L&D a couple days earlier when I first thought something might be off. Guilt for being so reproductively defective. Obviously that last one has nothing to do with anything I actively did or didn’t do, but why does it seem like some people just have so many more challenges than others when it comes to having babies? My OB doesn’t think this is related to our losses in any way, but no one seems to have any theories on why this happened, either. I’m certainly glad we don’t want any more children after this. Because if the miscarriages hadn’t scared me away from getting pregnant again, this sure as hell did.

Anyway, sorry to go down a dark road. Emmett really is doing about as well as he possibly could right now. I just know I will have some stuff to work through for quite a while. D and I both probably will. But tomorrow E is one week old! He took a pacifier today (who knew they made pacifiers that tiny?) and the nurses all marveled about how good his sucking was, which will hopefully help him out when it comes time to breastfeed eventually. He was also quite alert several times today, which was really great to see. In just one week, he has changed so much and I’m looking forward to his continued progress.

Baby Emmett, NICU

NICU day 5

May 23, 2016August 6, 2018 Keeping up with the Hoffmans

Today I got to hold E for the first time. And T met his baby brother for the first time. My heart is so full.

The day started off a bit frustrating. D had spent the night at the hospital last night and this was the first morning since E was born that I had to get T ready for school on my own. As I mentioned in my birth story, getting him ready can sometimes be a challenge. And with trying to find time to pump this morning on top of everything, I was running late. And then T threw a tantrum and wouldn’t get dressed. And then I left his backpack at home and didn’t realize it until I was pulling up to his school. When I finally walked into the NICU and saw D, I burst into tears. I think it’s safe to say I’m feeling a little overwhelmed.

Thankfully, the day quickly got better when we got the news that they would be removing E’s umbilical catheter today, which means we would finally get to hold him! They did that around 11, and then my parents came to visit and we had lunch together in the cafeteria. By 2 p.m. we were ready to do our first “kangaroo care.” It took two nurses to carefully remove Emmett from his isolette and transfer all his wires, but when they finally placed him on me, it was one of the greatest moments of my life. I ugly cried for a good 15 minutes, all the while trying to hold back heaving sobs so I wouldn’t disturb him. It’s amazing how something as simple as holding your baby gets taken for granted unless you’ve ever given birth and not been able to do so for five days. After a while I was able to calm down and just focus on Emmett. He was very content – I’ve never seen his breathing or his heart rate so regular, and his oxygen saturation levels went up so high they were able to turn his machine down to 21 percent – which is what you and I breathe. Emmett slept peacefully on my chest for almost two whole hours, occasionally waking and craning his head up to stare at me. And I was able to close my eyes and drift off to sleep as well. It was pure heaven. I would have stayed longer, but I had to pee! They have no problem letting us hold him as long as we want, but only want to get him in and out of the isolette once a day since it’s such a big ordeal. Note to self: drink less water tomorrow before doing this again. I’ve been trying to hard to stay hydrated for milk production and it backfired on me today!

Around 5 p.m., D went to go pick up T from daycare and brought him back here to meet his baby brother for the first time. This morning I had tried to explain to him that baby was no longer in mommy’s belly, but because he came so early he had to stay in the hospital for a while so the doctors could help him get bigger and stronger. He seemed to accept this explanation, and thankfully he has no idea babies come into this world any other way. But we felt it was probably best for him to get to see Emmett in order to really understand. He was amazing. We had told him he needed to be quiet, so he kept whispering “Hi Baby Emmett.” D held him up so he could see into the isolette, and every time we would set him down he would ask to be picked up again so he could see. When I got home later, all he could talk about was Baby Emmett. I think it’s safe to say he’s infatuated. As long as E stays healthy and T doesn’t pick up anything from school, we’ll probably plan to have him visit frequently. I think it will be good for him to see him growing and getting stronger.

Unfortunately, while D was picking T up, the alarm on E’s PICC line kept sounding. And when the nurse went to flush the line, she couldn’t. She said it was most likely a kink or a clot in the line – either way we’d have to remove it, put the IV In his hand back in, and redo the PICC tomorrow. So T’s visit was cut short since they had to remove the line right away. D took him home and I stayed behind to make sure everything went smoothly. It was pretty hard to watch them have to stick him in his hand, and then remove the PICC. Honestly, the worst part was ripping off the tape that was holding the line in place. He cried quite a bit and his levels were bouncing all over the place, after being so calm and steady most of the day.

Once he was finally calm, I went home so I could put T to bed, and then turned around and came right back here. I’ll be staying here tonight. D is actually going back to work tomorrow so he won’t be here much of the day, though he may stop by for lunch. I think his plan going forward is to go into the office a couple days a week, but try to work from here the rest of the time. I’m still figuring out what to do with work, but will likely take a little more time off and then either go back, or work remotely until we’re able to take E home, and then take the rest of my leave. I definitely don’t want to use up all my time off while we’re stuck in the hospital. So much of this is far from ideal, but we’re figuring things out as we go.

Baby Emmett, breastfeeding, NICU

NICU day two

May 20, 2016August 6, 2018 Keeping up with the Hoffmans

Emmett is two days old now – about 55 hours to be exact. So much has happened in just one day, and I think the gravity of what we have ahead of us is starting to sink in. How can we do this for three months? It feels impossible. But I guess we have to. The alternative is even more difficult to fathom and I refuse to even type it. The good news is, Emmett continues to impress the NICU team, though we certainly got our first taste of the “two steps forward, one step back” pattern we were warned about today.

The biggest milestone today: they removed his breathing tube! That’s a huge step in his journey toward breathing on his own. The problem was, he still needed some assistance, and the team determined a CPAP (like what adults with sleep apnea use) was the way to go — and Emmett HATED it. It was too much air pressure for him, so every time he would get a puff of air from the CPAP through his nose, he would open his mouth in reflex and chuff out some of that precious oxygen. This caused the oxygen sensors to go berserk every couple minutes and made it sound like he was crashing. Even though the nurse and RT assured me he was fine – that he just needed to get used to it and that the alarms were just overly sensitive, the sound of all those alarms was just so unnerving, and in my sleep deprived state (3 hours last night and 4 the night before), it was simply too much for me to handle. Emmett was flailing around in protest, alarms were going off left and right, and I broke down sobbing. This went on for a couple hours. They even put a chin strap on him to keep him from letting all the air out his mouth, but then his face just looked smooshed and he was still fighting the machine. Finally, the team determined he was expending too much energy fighting and tried a nasal cannula instead of the CPAP. It was like an instant calm came over the room and things have been better ever since. I swear, I’m going to be hearing that damn alarm in my nightmares. D joked that E will probably need it to fall asleep once we take him home.

One thing I should mention, that was pretty amazing, was in between pulling the tube and putting on the CPAP, I got to see his full face again for the first time since birth. It was only a split second, but I snapped a quick photo.

Another benefit of not having the breathing tube is that he can actually cry now! As of right now it sounds more like a kitten mewing than a baby crying, but to me it’s the most beautiful sound in the world. I hope six months from now when he’s hollering and screaming all night, that I remember and appreciate how truly beautiful that cry really is, and how far we’ve come.

His bilirubin was looking a little low today, so after bragging yesterday that he hadn’t needed phototherapy yet, he started on it today, and will be on it through the night. They’ll draw his levels again in the morning. Thankfully, he doesn’t seem to mind it, though our whole room is glowing blue.

Around 1 p.m. the nurse wanted to insert a PICC line for nutrition and antibiotics. It’s a bit of a complex procedure so they require parents to step out of the room. D and I used the opportunity to take a walk and get some fresh air. We went down to an outside courtyard and sat in the sun, and I called my parents and gave them an update. The nurse called me on my cell when they were done and we went back to the room and found a calm and sleeping Emmett. Everything had gone perfectly with the PICC.

Around 5 p.m., the doctor stopped by to tell us she was concerned with how high his metabolic acid levels were. She said it could be something as simple as dehydration (he has been peeing a ton), or it could be an infection. She wanted to give him fluids and another dose of antibiotic (he’s been on antibiotics since birth due to the amniotic rupture), and then check his levels again at 8 p.m. If they didn’t drop, she wasn’t sure what could be causing it and mysteries are no good. D and I were a little troubled, but took a break to go home to the dogs, ate some dinner, cleaned up the house a bit and then met the doctor back in E’s room at 8. Thankfully, his metabolic acid levels are now fine. What a relief.

Another highlight of my day? I officially have working boobs. I may have shed tears of joy over pumping a whole 1.5 ML of colostrum this morning. It’s not much, but it was enough to get into a syringe and we can start feeding tomorrow (he’s been on just IV fluids so far, and the doctor wanted to figure out what was happening with his metabolic acid levels before we attempted feeding). I’ve been pumping every 2-3 hours around the clock since he was born and was beginning to get pretty frustrated with my lack of anything to show for it. But since this morning’s pump, I’ve been gradually increasing my production and am now up to 8 ML. The nurse says we’re already way ahead of what he needs, so I guess I’ll just get started on that stash! Since we’ll be pumping for quite a while before I can actually nurse him, it’ll be nice to have a good stash built up so I don’t have to worry about running out. Speaking of nursing — the nurse and I both noticed he has a tongue tie, which could interfere with nursing. They said it would be no problem to clip it once we get a little closer to that milestone. No use in putting him though more than necessary right now.

D went home to sleep shortly after talking to the doctor this evening, and I’m spending another night in the NICU. Tomorrow I’m going to take a little break and take T to swimming lessons, and D will come stay in the NICU. Then around naptime we’ll trade off and I’ll head back here and he’ll take T to a party. I’ll probably go home to sleep tomorrow night since we’ll have T with us again. Balancing our home life and our NICU life is going to be a bit tricky. We still haven’t decided when or how to tell T about baby brother, but will probably wait until E is presentable enough that we can introduce them. Right now all the wires are pretty intimidating and he’s too fragile for us to even hold. I can’t wait for the day I can get a picture of Theo holding Emmett.

Really looking forward to seeing my big boy tomorrow. I’ve missed him so much.