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.

Another Day, Another Specialist

After Addison’s stay in the PICU in December, we finally got a consult to a pulmonary (lung) doctor. (Hey, it only took four hospital stays in nine months). They got us an appointment for the middle of January. I did like the doctor a lot. While she agreed with us that Addison’s breathing was abnormal, she did not think it was her lungs that were the problem. Her oxygen saturation, chest x-rays, and lab work are good. Basically, she said she manages to compensate for whatever is going on. She said we needed to see an ENT (Ear, Nose, Throat) doctor. (Not a surprise for me). At first, she wanted us to go to Cincinnati and see the ENT’s there because they are supposed to be the best in the country. However, she decided to do a soft tissue x-ray of Addison’s neck first. She said it was a good starting point and it might show us something. It did. The x-ray showed that she doesn’t have a lot of air moving though her trachea. They thought it was likely that her adenoids were enlarged and blocking air movement. Since it seemed to be something fairly simple, we decided to see the ENT’s at Akron Children’s. I was happy to be able to get her an appointment within a week and we saw the ENT a couple of weeks ago. He said that her adenoids are very enlarged, to the point that they are probably completely blocking her nose and forcing her to breathe through her mouth and causing the snoring sound that she always makes. Her tonsils look fine, so she just needs to have her adenoids removed. Unfortunately, we have to wait three months, as the first available date for surgery is April 28th. At least we have some answers and the process is finally started. I’m hopeful that this will help her breathing a lot. I’m hopeful that if she can get more air in and breathe easier at baseline, then when she gets sick, it won’t be such a big deal. Hopefully in the future, a cold won’t mean a hospital stay and time in the ICU. Hopefully, with her breathing being less of an issue, she will simply feel better on a daily basis and do better with all her therapies. I feel as if her breathing has gotten worse over the past month or so and that it is really affecting her energy level and her sleep. This surgery cannot come soon enough for me. I am optimistic that it will make a huge impact on Addi’s everyday life.

She’s a Fighter

I have been thinking a lot about Addison and how far she has come this past week. The month of October always makes me think about our little peanut and all she has been through. Two years ago, she was extremely ill and was transferred to Akron Children’s from the NICU at Aultman. In some ways, it has been a very long two years. She has been through so much since she was born and I am so proud of her and all the progress she has made. She’s a little fighter and she just keeps powering through everything that life throws at her. As I sit at her bedside typing this during yet another hospital stay for respiratory problems, I am just amazed by this girl. This is day number three of her not feeling well (wheezing, coughing, labored breathing, etc). We came to the ER at 7 pm Thursday and she didn’t get settled and get to go to sleep until midnight. She missed a feeding; her meds were way overdue. Between 7:30 am and noon Friday, she had projectile vomited, been deep suctioned twice, assessed at least a dozen different times by doctors and nurses, given a breathing treatment and inhaler, and just generally irritated and not left alone, and yet she was still smiling at me. She has always been such a sweetheart.
Addison was transferred to Akron Children’s on October 6, 2014. That day (and the surrounding days) were some of the worst days of my life. I can honestly say, I have never been so terrified as I was during that time period. Addi was so sick and my heart just dropped to my feet the moment NEC was mentioned. Knowing your child’s life is in danger is the worst feeling; there are no words to describe how that makes you feel. I don’t think it even fully hit me how terrified I was and how very ill she was until after her surgery. I remember the surgeon coming to talk to us about the surgery and he walked us down to the NICU so that we could see her. They were still getting her settled so he left us in the hallway to go check on her and see if they were ready for us, and I remember I completely lost it at that point. I just started crying hysterically. I was so relieved that she made it through the surgery and he was able to find and correct the problem. In that moment, the switch flipped and all those emotions I had been holding back came rushing in. It was a long eight weeks after surgery until she could go back and have her ileostomy reversed. She struggled with feeds and dumping all her nutrition out through her ileostomy. The ileostomy constantly leaked; it was impossible to keep a good seal around the bag. She went through morphine withdrawal. We all made it through and she learned to take bottles very quickly. Of course, being so premature and so ill did not leave her unscarred. She’s made it through it all like a champ though. She has always been a happy, content baby. The only time she cried a lot was when she had undiagnosed seizures. She’s taken it all in stride: vomiting, surgeries, NG tubes, radiology tests, bloodwork, muscle spasms, physical therapy, occupational therapy, seizures, and hospital stays. This girl has to work so hard for simple little things like holding her head up and standing. Every little grin she wears makes my heart so happy. I am so proud of her and how far she has come in two years. Two years ago she was on the ventilator, in an isolette, trying to recover from her first surgery and having a rough time of it. While we are in the hospital yet again two years later, she is in a big girl crib and cooing and smiling at me and just generally being adorable and getting all the nurses to love on her. She can hold her head up so well lately. She can stand with her leg braces on in a stander and she can take baby steps in a gait trainer. She loves doing speech therapy and getting tiny little tastes of different things. She makes eye contact and loves watching her sisters. These may seem like such little things, but for her, they are huge steps. She just keeps going and trying and smiling. All our girls are miracle babies and I’m so incredibly proud of them. Addison has just had an unfairly difficult life thus far, and I hope it keeps getting better for her. I hope that in two more years, I will be able to look back and see an incredible amount of progress again. I’m incredibly grateful that she has been able to overcome so much. I’m thrilled that this was a short hospital stay and that I get to take her home today so that we can feel like a family again. Mommy loves you Peanut.

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Addison after her first surgery two years ago. She looks so awful.

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Addison during this hospital stay.

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Two years old!!!!

It is hard to believe, but our little girls turned two on August 20th! At times it seems like the past two years have flown by, and at times it feels like they were the longest years of my life. I’m pretty sure they were just teeny, tiny, two pound newborns in the NICU and now, we have happy, healthy, thriving, ornery, tantrum-throwing two year olds!

We threw the girls a dog themed second birthday party because they love dogs. It was a very hot day, but we had lots of family and friends to help us celebrate. Our girls are very loved. We are incredibly grateful for all of the wonderful people in their lives. They might not know yet how blessed they are, but Ryan and I certainly do. Thank you to everyone who came to celebrate with us! Your gifts were appreciated, but even more than that, we are so thankful for the fact that you took the time to come celebrate with us. Your time and love for our incredible little girls means so much! (Official thank you cards will be coming soon!)

 

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I made a dog cake! (Thanks Pinterest)
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It took far longer than I would like to admit to make these.

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What are we supposed to do with these?
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Icing is delicious!
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Oriana needed a little help, but she figured it out.

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It was hot; look at those rosy cheeks!
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Being silly after naptime

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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…