Update on Addison

Addison is doing much better. She still has a long way to go, but she is taking baby steps in the right direction. She has been off nitric oxide for over 24 hours now. She was started on an oral (or technically g-tube) medication that has the same effect on her lungs as the nitric oxide and they increased the dosage of that today. She is still intubated and likely will be for at least a few more days. They discontinued her paralytic yesterday, but she is still sedated. She has woken up off and on and is moving a little bit. Since she is no longer paralyzed, she was also able to get rid of the continuous EEG. She was extremely swollen from all the fluids they gave her, so she’s on a diuretic drip; that has helped a lot. Her foley catheter also came out yesterday. She is still on an antibiotic. She has been getting her home feeds (minus a little water) and tolerating them well. She was started on a course of steroids yesterday. She has ranged from 40 to 60% oxygen. They made some minor changes to her ventilator settings yesterday and had to increase her oxygen as a result, but overall she has tolerated them. They want to keep her oxygen at 50% or lower today. Her chest x-ray this morning was back to looking normal. Her wonderful nurse yesterday gave her a bath and got as much of the glue out of her hair as she could. Violet sent Addi a hair clippy the other day, so she has that in. (Because when you have three girls, hair accessories are very important; they can make or break your day).

 

Now, I’ll try (and probably fail miserably) to explain why all this happened and what they have diagnosed Addison with. I’m still trying to understand everything myself, so I’ll just hit the highlights. They think she had components of both brochopulmonary dysplasia (BPD) and pulmonary hypertension going on. From what the intensivist says, they are recently finding out that there are two types of BPD. The first type is what Violet had, where the ventilator and oxygen do damage to the alveoli. The second type is apparently what Addison has. In this type, the alveoli are not as damaged and they typically look like those in a normal, healthy newborn, but there is inflammation in the lungs. It is frequently occult for a while and shows up later on. She had an echocardiogram that was normal, but since she needed the nitric oxide, the doctor says that means she has pulmonary hypertension or at least some type of pulmonary vascular reactivity (treated the same). She was started on a steroid yesterday to help with the inflammation. Apparently both of these problems are something she will outgrow. Most children on this medication for pulmonary hypertension are off of it by the time they start kindergarten. The most important things for Addi are to: keep her healthy and avoid exposure to illness as much as possible; make sure she’s getting enough calories and growing well (which she has been); and prevent any type of aspiration. They have been questioning whether she has had some silent aspiration. She has been off her reflux medication for almost a year because she stopped throwing up and was doing well without it. She has been placed on a reflux medication in the hospital and I’m sure will have to continue it at home.

 

I’m glad to have some answers. She got very sick very fast and it was terrifying. It’s frustrating that we just saw a pulmonary doctor less than a month ago, and she said Addison’s lungs were fine. And apparently, at that time there was no way to tell that they weren’t. It just seems a little crazy that something so serious was able to sneak up on us and all the specialists she’s seen (not to mention all the time we have spent in the PICU over the past year). I’m thankful that she’s moving in the right direction. She is taking baby steps, but they are baby steps towards getting better. She’s doing everything right, we just have to let her take her time. Again, thank you all for your thoughts, prayers, encouragement and offers of help. It means a lot.

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Home Away from Home

I hardly know where to start with this post. So I’ll just start. I’ll try to be coherent through the stress, anxiety, and exhaustion. The girls all got colds this past week. Oriana started it, and like always, she had a runny nose for a day or two and was pretty much over it. Violet always seems to get hit harder and longer. Of course, we were just waiting for Addison to inevitably come down with it. It hit her Saturday morning; she woke up with a super snotty nose and started spitting up lots of secretions. We attempted a tube feed, but she vomited it up pretty much immediately. I did manage to get her medications in her (which is really the most important thing). Other than the coughing and vomiting/spitting, she wasn’t doing terribly. Her breathing was fairly easy. We kept a close eye on her. Around 4 pm, she took a turn for the worse. She was really starting to struggle to breathe. I had packed our bags for the hospital that morning, so I threw everything in the car and Addison and I drove to Akron as fast as we could.

 

In the ER, her oxygen sats were low, so they tried her on a couple liters of oxygen, but she was still working too hard to breathe and her sats would not stay up. So Addison got put back on her trusty old friend the vapotherm. Her breathing kept getting progressively worse, she was really struggling and they had to keep increasing the flow on her vapotherm. By the time we got up to the PICU at about 9 pm, she was on a vapotherm of 20 liters and 100% oxygen. To attempt to avoid intubation, they tried her on bipap, but it did not help. She earned herself the ventilator. She was totally exhausted at that point, but she was still fighting them even though they sedated her for the bipap trial.

 

It was a very long night. She was on 100% oxygen for quite a while and it took a long time to find the vent settings that she liked. The doctor didn’t leave her bedside for a solid two and a half hours, and the nurse practitioner was with her even longer. It seemed like no matter what they did with the vent, she just wasn’t oxygenating well. They started her on inhaled nitric oxide to help dilate the blood vessels in her lungs and improve her oxygen level. It did help and she’s still on it. They finally found some ventilator settings she liked. It took a long time and multiple tries, but they were finally able to place a triple lumen catheter in her groin and an arterial line in her wrist. Her chest x-ray looked like she has a viral infection, and her swab just came back positive for rhinovirus and enterovirus. Her perfusion and urine output have been poor off and on, so she’s gotten several fluid boluses and she’s very swollen. As of this morning, she is finally down to 45% oxygen. She has made some improvements, but she still has a long way to go.

 

I cannot even begin to process everything that has happened. I have not seen her this sick since she was in the NICU. I have never seen her breathe like she was before they intubated her. I’m not sure in all my years of nursing I have ever seen anyone breathe like she was last night. It was horrible. I figured we were in for our usual couple days in the PICU on vapotherm, a day or two on the regular floor for monitoring and restarting feeds and then home. Needless to say, I was completely stunned by how incredibly sick she got so incredibly fast. She was fine and then she wasn’t; and it just kept getting worse. She’s at least resting comfortably now, not that she has a choice, with the fentanyl and versed drips, but she was so uncomfortable for so long, she needed a break. This gloomy weather sure seems appropriate for how we are feeling.

The vacation that wasn’t: Part 2

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On the way to Michigan! In this picture, I am wedged between Violet’s car seat and Addison’s so that I could reach back to Oriana. Because she and Violet needed snacks.

On our short-lived vacation, we managed to make it to the beach once. We spent a beautiful morning by the lake. The girls loved playing in the sand. They did not love the water; they refused to get close to it. They built lots of sand castles with Daddy, Grandma, Uncle Josh and Emily though. We had fun that morning and it was gorgeous.

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Just about all of my favorite people in one picture!

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We also got all three girls into the pool a few times. Violet really liked swimming. She was kicking and splashing around and having a great time. She also liked getting in a float and having someone push her around the pool. Oriana wasn’t as enthusiastic about the pool. It was slow going getting her in. She was very nervous and she said “oh no” a lot and did a lot of deep breathing. She wouldn’t get in a float, but each time she was more comfortable and more willing to splash around. Addison loved floating in the pool. We just sat her in a float and she was as content as could be. Addi also liked lounging by the pool. I set her up in lounge chair by the pool with boppies and her tube feed one night and she was happy as could be!


On our last day in Michigan, we took the girls to a little farm/petting zoo. As usual, Violet was the adventurous explorer and Oriana didn’t want to be put down. Violet was running around checking everything out and Oriana cried if Daddy tried to set her down. Violet got to pet baby chicks, rabbits, and goats. Plus they saw ducks and sheep and cows and cats and pigs. Oriana did pet a baby chick, but that was about it. Addison was not overly impressed and slept through most of it. We had hoped that our little outing, plus a nice nap in the car on the way back to the house (it was about an hour drive) would make for a happier Violet. She was super happy while we were out and about, and they did nap most of the way home, but it just wasn’t enough. She was back to raging out in no time; she wanted nothing to do with the pool or anything else. So Mommy started packing everything (that I felt like I just unpacked) and we headed for home at about 8 pm. After the first hour, the girls (thankfully) slept most of the way home.

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These baby bunnies were Violet’s favorites. I think we petted them three separate times.
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Petting more “hop hops”.
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Taking selfies in the car

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Oriana was being silly on our way home from Michigan. She sat with this blanket on her head (without cracking a smile) for 20 minutes while Ryan and I laughed.
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Happy that we were heading home.
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Check our her serious face.

We ended up getting home at about 2:30 am Wednesday. We got the girls out of the car and into their room to change their diapers and they were literally begging to get into their cribs. They slept until 11 am, plus took their normal three hour nap. They were very happy to be home. We spend all day Wednesday relaxing and recovering.


Thursday we decided that we wanted to go do something (since we were still on vacation after all). I really wanted to take the girls to an aquarium, and we decided that we would go to the Pittsburgh Zoo and Aquarium because they like animals so much right now. The only down side was the two hour car ride. After we got home Thursday, I felt like I never wanted to be in a car again, especially not with grumpy toddlers.

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On our way to the zoo
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Playing with their “electronics”

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Flamingos!
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They loved the aquarium.
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Going to the zoo is exhausting!
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Addison decided to stay awake on the way home.

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Mommy and Daddy even managed to get a date in Friday afternoon. While it was disappointing to leave our planned vacation so early, we made the best of it and still managed to have some adventures. The girls were much happier at home, sleeping in their own beds and that is what really mattered. Maybe we will have better luck next time.

 

The vacation that wasn’t…

An update on what, and how, the girls have been doing is in the works, but in the meantime, here’s what we have been up to as a family. We had planned a vacation up to Lake Michigan with my family for the first week of August. I won’t lie; I was definitely looking forward to that vacation. Knowing it was coming got me through a lot of crappy days. While preparing for a week-long trip with three little ones is no vacation, I had high hopes that we would have a relaxing week by the pool and lake. I’m sure it comes as no surprise that the kiddos had other plans. We left on a Saturday morning and spent about six hours in the car. They did pretty well while we were on the road; it took them a lot longer to fall asleep than I thought it would. They were definitely over it by the last hour because Violet and Oriana both kept saying “all done” and “out” over and over. They were surprisingly comfortable when we got to the house and were running around and making all kinds of noise in no time (lots of hardwood floors – great for echoes). They loved running around the big yard and the tennis court that first night. At least they got rid of some of that pent up energy from being in the car all day. Addison is so chill, she gave us no problems. She loved lounging by the pool or on the beach. She’s not picky. (Haha, last year at this time, who would have ever thought I’d be able to say that about Addi?!) The first night, Violet seemed to sleep well. Oriana didn’t really wake up, but she cried a few times during the night. I just got up and rubbed her back and she quieted down. To make a possibly long story short, Violet did not sleep well after that first night. They seemed to sleep ok at night, but they were up at least two hours earlier than normal every morning. Violet never took longer than an hour nap (compared to their 2 to 3 hours at home) and she would wake up from that nap and scream for a solid 30 minutes. Simply put, she ended up being exhausted and very unhappy. We kept hoping it would get better; that she would adjust and sleep well and be more content and easier to deal with. That didn’t happen and we ended up leaving early. We were supposed to stay Saturday to Saturday and we packed up and left about 8 pm on Tuesday night. We had tried everything we could think of to make it better for Violet, but nothing seemed to help. The only option left was to go home so she could sleep in her own bed. Turns out, that was exactly what she needed. One night in her own bed and she was so much happier and well rested. We were very disappointed to have to leave early, but it was clearly what the girls needed. Cranky toddlers are no fun anyways. We did get to have some fun in Michigan and after we came home, and I will share our adventures in another post (with lots of pictures).

To be continued…

The Patient/Family Side

I get to experience the healthcare provider part of the hospital all the time, but having Addison in the hospital the past few days has really got me thinking about the patient and family experience of being hospitalized. We have mostly had fabulous nurses. I could tell that they truly cared and they did everything they could to help make our stay more comfortable. We also had a couple not so great nurses. There was one who didn’t even acknowledge me the first time she came in the room after I arrived for the day. There was another who assured me that she was “keeping an eye” on Addison’s monitor from the nurse’s station, but didn’t set foot in the room for two hours to actually check on Addison when her heart rate was low after being sedated for an MRI. When I mentioned Addison’s NG tube needed retaped since they don’t usually change them in the hospital unless they get pulled out, she promptly informed me that there was tape over on the counter and left the room. Now, I am more than capable of retaping and repositioning her NG since I do it ALL THE TIME at home, and have for the past 3 months. But, I was utterly exhausted and it would have been nice to not have to fight my 14 month old to get her NG positioned properly and taped well. I would have at least appreciated an offer of help. I guess the point is, it is so very important to consider what our patients and families might be going through. It especially important when you work with children. (Also with adults, but it’s a bit different). For example, let me tell you a little about the last few days. Thursday morning, Addison had PT and OT. We were home for a couple of hours, and then I brought her to Akron for her EEG. Friday morning at 9:30 am, I got a phone call from her neurologist telling me to bring her to the hospital to be admitted because of what they saw on her EEG. I had just finished feeding Violet and Oriana and was in the middle of eating my (super gourmet) breakfast of cereal. I then spent the next 30 minutes on the phone, calling Ryan and trying to find someone to watch Violet and Oriana, while running around attempting to pack bags for Addison and I and get dressed, and keeping an eye on the girls. We were at the hospital by noon, I spent the night Friday and spent all day and night Saturday with Addison. I went home Sunday afternoon so I could see Violet and Oriana for a few hours, shower, and attempt to get a few hours of sleep before working midnights. Monday morning, I got home from work and spent the morning with Violet and Oriana. I slept for an hour and a half while they napped. Then I packed them up and brought them with me to the hospital because Ryan was at the hospital with no car and we had no one else to watch the girls. So he took them home and I stayed with Addison until my Mom came to pick me up after work and took me home. I got to sleep in my own bed Monday night (which was wonderful, by the way). Then I was back at the hospital on Tuesday by 11:30 am and spent the rest of the day and night. Let me also mention that I spent a couple hours Saturday afternoon on my phone, calling and texting so many people to arrange for someone to watch Violet and Oriana Monday and Tuesday. I am tired. I am stressed. I am overwhelmed. I am missing my other children. I am missing my husband, because for the past five days, we have pretty much only seen in other in passing. I have slept in my own bed one night out of five. I am worried about my child. I am sick of hospital cafeteria food. My life doesn’t stop because my daughter is in the hospital. I still have to work and pay bills and make sure my family is taken care of. So if I’m a little snappy or unfriendly, I’m sorry. You aren’t really seeing me at my best. I’m trying my hardest and doing the best I can. But I am stretched about as far as I can go. So be just a little patient with me. Ask if I’d like to re-tape that tube or if I’d like you to do it. Remember that I am only human.

Having 3 babies is…

Everyone always wants to know what it is like to have 3 babies. I’m here to answer that question for you. So here goes. Having multiples is:

  • Having everyone stare at you as you take your 3 kids and 2 dogs for a walk. (No seriously, I’m surprised some people don’t wreck their cars).
  • People assuming that it is impossible that you are out alone with 3 babies. (I mean, don’t I have help? And don’t I need help from random strangers)?
  • Getting 1 or 2 of them settled down, and the 3rd starts throwing a fit, which starts the other 2 all over again.
  • A constant version of “I want what she has” and “she touched me”! (Even though they can’t even talk yet).
  • Not being able to fit the giant stroller that will hold all 3 of them in your giant vehicle. (I have to take the double and a single stroller; or if it is just me the double stroller and a carrier; or I have to switch cars with Daddy because his car will fit the big stroller).
  • Needing an extra 20 minutes to put the babies and all the baby paraphernalia in the car.
  • Praying that they will all nap together at least once during the day so that you can get something done. (Or, more likely, so you can take a short nap because these kids are exhausting).
  • Having a house that constantly looks like an F5 tornado just rolled through.
  • Being covered in baby puke, slobber, and/or food at the end of day. (Who am I kidding? The beginning of every day).
  • Trying to figure out if there is a way you can hold 3 babies at a time, because everyone wants Mommy and you are by yourself. (Even if someone else is there, everyone still wants Mommy).
  • And then they learn to crawl and climb, which means they can chase you and climb all over you all day!
  • Accepting that nothing, nothing, is simple or ever will be again.
  • Dragging them all to therapy/doctor appointments, even though the appointment is only for one of them, and just hoping and praying that they will behave while you are there. (Or at least not have a complete breakdown).
  • Realizing you can’t even remember when the last time was that you actually felt rested.
  • When they first came home, it was feeding them every 3 hours around the clock, and falling asleep while feeding them in the middle of the night more times than I can count.
  • Wanting to sit in the corner and cry because all 3 babies are crying and screaming for no apparent reason.
  • Being constantly stopped when out in public so people can see your babies and ask you a million questions. (Doesn’t matter if you are trying to get somewhere or running late. Nope, you are a spectacle).
  • Being asked the same questions over and over again by random strangers (Yes, they are triplets. Yes, they are all girls. No, they are not identical. Yes, we did fertility treatments. Addison, Violet, Oriana. Yes, they keep me busy. I do it because I don’t have much choice. Yes I have help.…Blah, blah, blah).
  • Weighing whether or not it is worth it, or you feel like you can handle, taking them out in public (see previous two bullet points; don’t get me wrong, I know it is awesome and rare and people mean well, but I literally have the same conversations over and over again. It gets old and sometimes, I would just like to move on with my day and go about my business).
  • Having constant entertainment (because these kids are goofy; they get it from their dada).
  • Basically living in a state of somewhat organized chaos and having 3 little girls that pretty much run the house.
  • Never going to the bathroom by yourself again (who am I kidding, I haven’t been to the bathroom by myself in years anyways, Jackson insists on being with me so I don’t escape out the window. Now I just have 2 babies and 2 dogs following me).
  • Getting one baby out of something she shouldn’t be in or taking something away that she shouldn’t have, just to turn around and find the other one attempting to eat dog food.
  • Giggles, lots of giggles.
  • Going through formula and baby food faster than you ever thought possible.
  • Trying to comfort 3 babies at the same time after they all got shots.
  • Dealing with 3 cranky babies due to teething or shots.
  • Getting far too much attention and far too many stares everywhere you go.
  • Feeling like a zookeeper trying to control a bunch of monkeys.
  • Really, it is mostly just multiplying what it is like to have one baby by 3!

It is not all bad. I wouldn’t trade these little girls for anything. They make me happy, they make me laugh, and sometimes, they make me cry and question my sanity. I love them with all my heart. I wonder how I ever thought I was busy before I had them! Sometimes there is not a lot I wouldn’t do to get a break, but my crazy little monkeys make my life complete.

Where did that name come from?

I must give credit where credit is due and share with you how the name “My Pile of Babies” came about. I can honestly take no credit for myself. I am very bad at naming things. So bad, in fact, that I had to steal an idea from a four year old. A friend of mine has a cute little man named Christopher. Christopher thinks my girls are great. He wasn’t too sure about them at first, but he came to terms with the idea of so many babies very quickly. They provide great entertainment for him and vice versa. He is at that stage where everything is “his”. He started calling the girls “his big pile of babies”. I can honestly say, I have not laughed so hard at anything in a long time as I did the first time his mom told me he said that. When I was trying to decided on a blog name, I asked my husband for help because he’s usually good at stuff like that. He was the one who suggested big pile of babies and I thought it was perfect. Hopefully, Christopher will forgive me some day.