Another PICU Stay

Well, the shit show that has been our lives since February continues. Another hospital stay. I’m so tired I can’t even think straight any more. I’m tired of the four walls of this hospital, I’m tired of shitty cafeteria food, I’m tired of our lives being in total turmoil, I’m tired of listening to my child cry, and I’m tired of not getting any answers. I’m not sure I even know what our “normal” lives were like any more. Addi has landed herself in the PICU again – I’m pretty sure it’s her favorite place; it’s starting to feel like our home away from home and we know far too many people here. Which is nice, but getting to know the ICU staff is not really a life goal that you want to strive for.

 

Addison had her adenoids removed on Friday April 28th. She did great the day of surgery and for a couple of days after. By Sunday night she was crying a lot and acting like she was in pain. She was difficult to get to sleep and she was only comfortable if she was being held. We figured it was just pain from the surgery and she just needed a few days to feel better and for all the inflammation to decrease. Monday through Wednesday were much the same – lots of crying/screaming and difficulty getting her to sleep or settle if she wasn’t being held. Thursday she slept literally all day and only really woke up in time to be fussy around bedtime. Friday I got her to take a short nap in her crib, but she woke up screaming. By the time Saturday rolled around, she was screaming and writhing in pain and was inconsolable. So we brought her to the ER. They found that she had an elevated white blood cell count, but they couldn’t figure out where the infection was – her urine was negative, neck CT was negative, chest x-ray was fine. They gave her morpine, which did nothing and versed, which worked long enough to keep her still for the CT. She had to be put on a little oxygen because all the crying was affecting her breathing and making her sats low. By the time they were finally ready to send us up to the floor, they had pretty much ignored her for a few hours, during which she had been screaming her head off because nothing I did made any difference. By the time we got up to the floor, her breathing was crap (she was retracting and working really hard), her sats were even lower and she needed more oxygen and she was still inconsolable and hysterical. They quickly called the ICU down to come evaluate her and we ended up in PICU within 30 minutes of our arrival on the regular floor. In PICU they could better medicate her and because the crying/screaming was affecting her breathing so much, she ended up on the vapotherm anyways. Basically, they have been sedating her to keep her comfortable while we try to figure out what is going on. She has as needed pain medication and IV drips of two different sedation medications. Thus far, we have not been able to figure out what is causing her pain.

 

To say that we are extremely frustrated does not even begin to cover it. It’s horrible to watch your child be in so much pain and to not be able to comfort her at all. It’s torture. We have done so many tests, but nothing has been the answer. It has been an incredibly frustrating, exhausting, emotional experience. I just want to find a reason why so we can fix it and get our calm, happy girl back.

We know a crap ton of things that this is not. It is not:

  • Reflux, EGD was normal, plus she’s been on two reflux medications for over a month now
  • Seizures, EEG was not changed
  • Even though her hips are dislocated, ortho says they are not causing this level of discomfort
  • Pancreatitis
  • Intestinal obstruction or twisting or constipation
  • Kidney stones
  • Any random fractures in her lower extremities
  • Increased fluid/pressure in her brain
  • An abscess or infection in her neck from her adenoidectomy
  • Low vitamin B12 level

 

There are two main theories we are working with now. The first is keppra rage. Apparently keppra can make you angry/irritable. This is treated with vitamin B6, so they started that a couple days ago. To me, she acts more like she is in pain, but I guess we will try it for a few days and see what happens. There is no information out there on how long people are on keppra when this “rage” starts. I asked the doctor to look into it and she was unable to find anything. When I attempted to google it, all I could find were a bunch of forums of people who are/had been on keppra discussing it, but nothing scientific. I need scientific. The second working theory is that with the damage she had to the white matter of her brain (way back in her NICU days), she could have trouble processing sensory input – everything is just too much for her to pay attention to/sort through so she is basically overwhelmed by it. There is talk of doing an MRI to see if there have been any changes since her last one, which was a year and a half ago. However, that doesn’t really change the treatment plan, so we are holding off for now. Finally, the only part of her body that hasn’t been x-rayed or imaged at all is her arms, so I asked about getting x-rays of her upper extremities just to be sure there is nothing going on there. We have been in the PICU for a week and it feels like we are no closer to the answer. She is still on the vapotherm because when she gets worked up, her breathing becomes a problem; we have been able to wean her flow a little over the past couple of days and she has been on room air for the past couple of days as well. At this point, I just want to find the cause so we can figure out how to treat it and get back to our normal. It’s crazy when you start hoping something is going to come back abnormal. She’s been miserable for so long, I would love to see her happy, content, and smiling again. As always, thanks for all your thoughts, prayers, and kind words. If you have taken the time to text or message Ryan or I, know that it is greatly appreciated.

 

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Update on Addison: Take 2

Here’s a quick summary of what has been going on with Addison over the past week. I am going to attempt to hit the highlights and not get too detailed. She was extubated last Saturday (the 18th). It was a rough first few hours off the ventilator, but she worked through it. She was on vapotherm until late Wednesday night, and has been on room air since early Thursday morning. They had to treat her for withdrawal from morphine and versed; she is no longer on a narcotic, but is still receiving Ativan. It is being weaned and she will be off it soon. They have also been weaning her off the medication for pulmonary hypertension, as our insurance would not approve it and her echocardiogram was normal. She probably had some component of pulmonary hypertension exacerbated by her viral illness, but it is not a problem that they think she needs medication for at this point.

They have been questioning from the beginning of her stay whether or not she is silently aspirating her tube feeds. The doctors felt like when they restarted her tube feeds, her respiratory status worsened (they also weaned her vapotherm a lot that day, so who knows for sure). They were pushing for us to convert her g-tube to a j-tube (which bypasses the stomach and goes straight into the intestines and means continuous feeds). We were not convinced that aspiration was the problem, considering she has been doing great with her feeds at home and doesn’t regularly vomit or get pneumonia. I put my foot down and told them they had to prove to me that aspiration was truly a problem before I would consider the j-tube, as it would make our lives that much more challenging and I’m not willing if it is not necessary. We finally got them to consult GI. It basically came down to this: whether she is having delayed gastric emptying and reflux/aspiration all the time or whether it is simply due to her illness, we cannot be sure. So we decided to try a medication that helps her stomach empty faster. That was started Friday afternoon and Saturday morning she was started on slow continuous feeds. She did well for a while, but then she vomited early Sunday morning. The GI doctor suggested that we try to increase the dose of her medication and go slower with continuous feeds Sunday as she wouldn’t be able to get converted to a j-tube until today (Monday) anyways. He thought we might as well try it while we were waiting – if it helped great, if not fine. She only lasted a few hours before she vomited everything back up, so she will get a j-tube placed today. GI feels that it will be temporary, just until she fully recovers from her illness and then we will be able to trial and hopefully resume g-tube feeds. Right now, the j-tube is the safest thing for her. It will prevent aspiration and allow her to get the nutrition that she needs.

Pulmonary also finally saw her and they think she has asthma, so they have started her on an inhaler to prevent asthma attacks, and she will have a rescue inhaler and possibly steroids at home for when she does get sick. We are also looking into getting some home equipment to help us manage her at home when she’s ill and maybe keep her out of the hospital a little bit more. Violet and Oriana have been able to see and talk to Addison on video calls, which has made them super happy. They still want her home of course. Hopefully we will be transferred out of the ICU today once she gets her j-tube since she will just need monitored for 24 hours to ensure she tolerates her feeds through it. It has been a very long two weeks for all of us, but there is a light at the end of the tunnel. Unless something (else) crazy happens, it is now only a matter of days until we can all be home together again. Once again, thank you for all the thoughts, prayers, and positive vibes. They make us feel so loved and we definitely needed that over the past couple of weeks.

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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.

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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.

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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.

 

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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…

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Update: June 2016

I have been seriously slacking on the blog posts for the past few months. I am really hoping to get back into posting more regularly. We did have a couple of rough months, so I didn’t have a lot of spare time or spare energy to devote to the blog. I do want to say a sincere thank you to everyone who takes the time to read and everyone who has told me how much they like reading the blog. I really appreciate it! It is nice to know I am not the only one who cares about it! I think we are overdue for an update on what the little ladies are up to these days, and perhaps a bit of a recap of our past few months. So here goes…

I’ll hit the highlights of our last few months first. I shared a pretty detailed post when Addison was hospitalized in the beginning of April with respiratory issues, so you all know that story. That started off the crazy. April was a rough month for our family. Of course, by the time Addison was home and feeling better, Violet and Oriana had started with colds. A week later, we were finally all healthy again! Then, our corgi ran into a metal leash holder while I was playing fetch with her, and ripped a five inch gash in her leg that earned her a trip to the emergency vet and cost over $400. (She’s a big baby, so they had to sedate her to sew her up. Plus she was on an anti-inflammatory and antibiotics). Ryan’s grandpa was admitted to the hospital with a fairly minor stroke, sent back to the nursing home, ended up in the hospital after having a major stroke, and was sent back to the nursing home on hospice. He passed a couple days after returning to the nursing home and he is greatly missed. Violet and Oriana got another cold around the last week of April (sooo much snot). I was worried about Addison catching it and, inevitably, she did. Saturday, April 30th, she started with a snotty nose and some sneezing. I wasn’t thrilled with how she looked Sunday morning when I got home from work, but I did what I could for her, and decided to see how she was doing after I got a few hours of sleep. When I got up, she looked worse and she was working too hard to breathe. So we packed up and headed to the ER. She ended up requiring vapotherm again, which means we went back to the PICU. They thought this round was just a viral infection, so no antibiotics, but it really kicked her butt. We were admitted from Sunday to Saturday. She came off vapotherm relatively quickly, but it took until Friday to get her off regular oxygen completely. She was admitted Sunday afternoon (the 1st), and grandpa passed away that night. The services were Friday afternoon/evening, so we left her at the hospital alone so we could go. It was the longest we have ever left her alone at the hospital (at least since she was in the NICU), and it was nerve-wracking to say the least, even though she was doing well at that point. Obviously, that was a rough six weeks or so for us; a ton of emotional stress and plain old exhaustion. Things have finally settled down and I certainly hope that continues for a long time.

Now that Addison has gotten over all the respiratory issues, she is doing just fine. The past few weeks she has been rocking PT and OT! She was holding her head up so well and being so active a couple of weeks ago, that her physical therapist decided to put her in an assisted standing device and she did awesome! She was putting pressure on her feet and legs to stand and even took some little steps. She knows she needs to bring one foot forward at a time. We are working to get her standing more and putting weight on her legs. My biggest challenge is wrestling her into her leg braces. Addison started seeing speech therapy again. I requested a different speech therapist than the one we saw before because I didn’t feel that she did a lot to help us out. Our new speech therapist has been great and I think that she will be a great help to us. After a couple of months of issues, we have also started back with Help Me Grow services. I had some problems with our previous developmental specialist and requested a new one, and that was a much more drawn out process than seemed necessary. However, we finally got a new Help Me Grow team and I think they will also be very helpful to us. We just recently switched from plain rear-facing infant car seats, to convertible seats that go all the way up to boosters. (They finally outgrew those infant seats; it just took a while). This has presented me with a bit of a new challenge because Addison cannot sit in a regular high chair or shopping cart. We are also looking into getting her a pediatric wheelchair because she is fast outgrowing the strollers and it is difficult to position her well in them.

Violet and Oriana. Oh, these girls give me a run for my money most days. They are into literally EVERYTHING! I always joke that they aren’t happy unless they are doing something they aren’t supposed to be. Their latest favorite game is emptying the cupboard of all my dishrags and towels and carrying them around, putting them in their shopping cart or stealing a big bowl to put them in, and generally just throwing them all over the kitchen and living room. They love to play outside and they love to go for rides in the stroller. (To be clear, they hate the stroller if it is not moving, but as long as it is moving, it’s the best thing ever. Seriously though, no breaks allowed during a walk, or screaming will ensue). They are determined to get their own way; it is a constant battle of wills. A couple weeks ago, I was forced into negotiations with the little terrorist who is Oriana about going outside. She wanted to; I didn’t. Well, she climbed in my lap and screamed and cried big old tears and begged for “shoes” and “outside” until I broke down and took them for a walk. That girl knows exactly what she’s doing.

Oriana says a lot of words; she will repeat just about anything you say. She’s started to string a couple words together too. Her favorites are “oh no” and “there go” (there you go, because I apparently say that a lot). This kid is not a big fan of eating; a couple of bites are generally sufficient for her, but she loves her milk. She downs a whole cup without breathing and then asks for more. And then, she steals and finishes Violet’s milk. I’m pretty sure she drinks half a gallon a day all by herself. I feel like I’m constantly saying, “we need milk!” Violet loves to feed herself with a spoon or fork. She doesn’t say as many words as Oriana, but she’s finally getting some (like milk, more, dog, car, shoes). She still loves blankies. Violet can throw a tantrum like no other. She has got quite the little attitude. She’s mommy’s helper: she watches me and she wants to help do everything. She loves to give kisses to all of us, especially Addison. Violet and Oriana loves Addison so much! Oriana likes to give her hugs and kisses too. Addison sometimes sleeps in a pack-n-play in my room during naptime and occasionally at night. If she is not in her crib in the morning or when they get up from their nap, they are immediately pointing at her crib and asking for her (Addis?). Violet and Oriana are completely off bottles; they finally embraced the sippy cups. They love to eat anything that Mommy or Daddy is eating. They love to read; their favorite book is “Go Dog Go,” we read it every night before bed. They are slightly obsessed with dogs. Their bedroom window overlooks the street, and they like to look out the window and check for dogs. They are always super excited when we get up in the morning and Jackson and Tesla are downstairs. Oriana is a Daddy’s girl and Violet is all about Mommy. Violet is generally more outgoing and willing to explore and Oriana is more timid. If we take them to the park, Violet likes to walk around, but Oriana refuses to move if we put her down. Oriana does tend to warm up to people a little bit quicker than Violet; Violet is slower to leave the safety that is Mommy’s lap. They have recently discovered the word “no” and realized that they can answer questions with it, so just about everything you ask them is answered with a “nooo”. They can climb stairs on their hands and knees. They also love to go bye-bye; they like to go shopping or out to eat or to Grandma’s. They just like to get out of the house for a while.

It is crazy to me that we will be celebrating the girls’ second birthday in a little over a month! It doesn’t seem like they should be two already. It is hard to comprehend how much has changed over the past year. Violet and Oriana are walking and talking and feeding themselves. At this time last year, Addison was still screaming all the time, we were still feeding her by mouth and struggling, and I was fighting her GI doctor and getting nowhere. We have made so much progress in so many ways. This stage has its own struggles and challenges to overcome, but knowing what we have overcome so far, helps me remember that we will make it through this too.

P.S. – In the interest of actually getting this posted, I decided to skip adding pictures to it. I’ll work on putting some pictures together and getting them posted some time in the near future.

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