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: 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.

Here We Are Again…

Well, we didn’t get to stay away from the hospital for as long as we were hoping. We thought after Addi got her g-tube, we would get a nice reprieve from spending all our free time at Akron Children’s. But, the universe had other plans. I had some lovely respiratory issues last week (cough, tightness, congestion, fever). It took me about a week to get over it and I have been worried sick ever since that the girls were going to get it. (Can you say self fulfilling prophecy?). Addison was coughing a little bit on Monday and Tuesday, but nothing major and was otherwise acting fine. Wednesday, she started to go downhill. She was very congested, she was coughing a lot, and she was sleeping a lot. When she was awake, she was fussy (very unlike herself). Her temperature ran low all morning; she never runs very high, but it was low even for her. She looked pale and sounded like she was having a hard time breathing. So we decided to take her to the ER to get checked out. And it is a good thing we did. She was a little bit wheezy when we first got to the ER, but it seemed like the longer we were there, the worse her breathing was getting. Her oxygen levels started to drop a little bit, so they put her on regular oxygen. That didn’t really seem to help, so they decided to use vapotherm, which lets them control the flow and concentration of oxygen (right now she’s on 40% oxygen and 10 liters; I know that will mean something to some of you). They did a chest x-ray, blood and urine cultures, and swabbed her poor little nose for every respiratory virus in the books. Since she required so much oxygen she got to be admitted to the ICU instead of a regular floor. She had her whole ER team worried for a little while.
The chest x-ray suggested that she might be in the very early stages of pneumonia. Her flu and RSV swabs were negative. Her urine looked good. They think she probably just has some type of viral infection. With all her chronic problems, she doesn’t have a lot of reserve left over to fight it off. So, we are basically just doing supportive care to help her through it. She’s on IV fluids, an antibiotic, a steroid, and an albuterol inhaler. They are not feeding her right now. At this point, it is kind of a wait and see what happens situation. The doctor said it is possible that this will be the worst she gets and it is also possible that she will get worse before she gets better. He said these viral illnesses tend to peak around day 4, and we are just now going into day 2. Hopefully, she doesn’t get much worse. I would hate to see her on the ventilator again. This vapotherm is causing enough flashbacks to our time in the NICU as it is. She had a fairly quiet night and was able to get some rest. Her breathing was up and down through the night. She will have a few minutes where it is normal, and then it will go back to rapid and labored again. At least she was able to rest, and she seems to be holding her own so far. We will see what today brings. I definitely see lots of coffee in my future. Thank you all for all the thoughts, prayers, and positive energy being sent our way. I’ll let you know how things are going later today.

Addison Update (March)

Addison has seen all of her specialists over the past few weeks; it has been a little busy on the appointment front. The good news is, we don’t have to see any of them again for 3 months, so hopefully it will be relatively calm until June. Here are the most recent developments:

  1. Gastroenterologist: The GI doctor and nutritionist were pleased with Addison’s growth and weight gain. We ran out of her reflux medication a couple of days before the GI appointment, so we decided to just discontinue it. Addison has not thrown up a single time since she started her seizure medications, so we don’t feel that reflux is a major problem for her anymore. She has had no problems with reflux since stopping the medication. I am all for having one less medication to give and refill. Plus, it was not covered by our insurance, so it was pretty pricey every month. They decided to increase how much formula and water Addison got each day, so we had to adjust to a new feeding schedule. She now gets 3 bolus feedings during the day. Her feeding still runs over night, it just runs a little bit faster since it’s a larger volume. My main question was whether or not we could try bottle feeding again. It has been so long since she took anything by mouth; I was concerned about her forgetting how to eat orally. The GI doctor said it was ok to try bottles and see how she does. She didn’t feel that a repeat swallow evaluation was necessary because Addison is developmentally much the same as when the first one was completed. Let’s just say, she did not get any better at eating out of a bottle!
  2. Physiatrist: My list of concerns to address with the physiatrist boiled down to a few main things this time: 1) Addison’s hamstrings have been especially tight, which we have noticed in PT a lot, 2) along with that, she has a lot of spasms in her legs, and 3) attempting to feed her out of a bottle was not going well. He decided to increase her baclofen (muscle relaxer) just a little bit. His concern was that the baclofen can make her more likely to have seizures. We knew that she could tolerate 5 mg three times a day very well, but you never know how it will go when the dose is increased. He considered starting her on a different medication (like valium) in addition to the baclofen, but we decided that the best course of action would be to see how she did with the increased dose first. If she doesn’t tolerate it, then we will have to lower the dose back down and add an additional medication. So far, she has done ok. He gave us a referral to see speech therapy again; hopefully they can help us figure out how to help her drink from a bottle this time. He also felt that she needed a splint that helped hold her fingers out straight. She currently has hand splints that just hold her thumb out, but they just aren’t quite enough. Our OT measured her for the new splints last week, so hopefully these ones won’t take two months to get here like the last ones. He also ordered her AFO’s to hold her ankle and foot in a neutral position, which should help the spasms in her legs. They came and did casts of her legs in PT this week, so those braces are in the wir
  3. Surgery: Addison had her 6 week post-op follow up at the G-tube clinic. They measured her to make sure her tube was still the correct size for her, and then we changed it for the first time. She had no problems and they said her site looked great.
  4. Neurology: Addison had another EEG and appointment with her neurologist. The EEG techs say she spoils them because she’s so good about getting all the electrodes put on. Her neurologist said her EEG was stable, no major changes from last time. He feels that her seizures are controlled (and I agree). He did not change any of her medications, and when we see him in 3 months, we do not have to get an EEG!
  5. Eye Doctor: Since Addison is on Sabril for her infantile spasms, we have to follow with an eye doctor every 3 months (because a side effect of Sabril is vision loss). She has been looking around a lot more, making more eye contact, and tracking things a little bit better. Her eye doctor agreed, so we do not have to do any further testing, unless we notice any changes. So far, she has improved with her vision and development since her seizures are controlled.

It is kind of nice to get all the specialist appointments out of the way within a two week time frame. We did not find any major issues or concerns; it is awesome when we just get to keep doing what we are doing. It is nice to feel like Addi is making some progress for a change!

And Suddenly…Toddlers!

It is a strange and amazing thing to watch your kids grow up right before your eyes. Sometimes as parents, you don’t realize it right away. You spend every day with your children, so all the little changes aren’t so obvious. I see all the different things the girls do and how they grow, but sometimes it hits me all at once just how much they have changed. It just recently hit me: we had these little babies just learning how to stand and take steps, and now, suddenly, we have two toddlers running around the house. I swear they went from babies to toddlers in a matter of days. Even their looks have changed; they look more grown up. Comparing their pictures from a few months ago to how they look now is such a huge difference. These girls can stop growing at any time!

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This is my rocker from when I was little that my Mom got out and cleaned up. Violet & Oriana LOVED it!

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And this is Addison making a grumpy face about going to doctor’s appointments today. But, seriously, how cute and grown up does she look in this outfit, with her tennis shoes on?!

 

Our little ladies are now 18 months old (or 15 months corrected age). Violet and Oriana are walking like old pros. When they get excited, they practically run. For being such skinny little ones, they eat a ton! Violet especially loves food. They eat everything I feed them, and then they eat half of my food too. They are finally starting to get the hang of sippy cups; Violet does really well. We haven’t been able to get away from the bottles at mealtimes yet, but the rest of the day we do sippy cups. They eat all kinds of finger foods and whatever food we eat that they can chew. They love books. Oriana loves stuffed animals. Violet still loves blankies. Violet also loves to take the dogs potty. Ryan or I have to hold her, and then she has to hold the leashes. As soon as we move towards the door with the dogs, she makes a beeline for it. (Now if only that enthusiasm would last for the next 18 years…). They are both becoming cuddlers. We have had some rough nights and days thanks to teething lately, but it seems to have let up a little for the moment, and I am super thankful for that. One teething baby is no fun, two is definitely a challenge. Violet and Oriana still don’t say many words. They are starting to get into the mimicking phase though and they make all kinds of sounds and do the whole nonsense baby talk thing. They also point and grunt at everything, which is really lovely (yes, that’s definitely sarcasm). They are getting there. I’m sure some day I’ll be wishing we could go back to the days when they couldn’t talk.

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Oh, Hi Mom, did you need your debit card?
They like to do somersaults - they do this and then we flip them over.
They like to do somersaults – they do this and then we flip them over.

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Oh, you know, just lounging around, eating cheerios and sharing with the dogs.

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Addison has been doing great! We love, love, love having the g-tube. It definitely makes her life and ours easier. She is growing like crazy. I think she gets taller every day. She still has an occasional seizure, but they are much  more controlled. She has been doing awesome in physical and occupational therapy lately; it is so nice to finally see her making some progress. She has much better head control, she is holding her hands open more, she responds to my voice a lot more, she moves her arms much more, she stretches a lot, and she tries to sit up from a reclined position. We go to get her g-tube changed for the first time this week. We have several other doctor’s appointments coming up soon too. I am slowly working her up to getting her daytime feeds done in an hour. We used to have to do them over two hours back when she was throwing up so much. Since she’s not been vomiting, I have been increasing the rate they run at by a little bit every week. Right now, we are up to about an hour and fifteen minutes. Addison has a great little grin, when you can coax it out of her. She still doesn’t coo very much. She is super content, and of course, she still loves to snuggle up and get her fair share of the cuddles.

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Cuddling with Jackson (he really just wanted her blanket).

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It’s been a challenge lately to feel like I’m spending time with and paying attention to all three girls. Addison tends to get a little neglected during the day, because Violet and Oriana are so insistent on having all my attention, and I can’t always get them to behave so I can hold Addison. It is great to be able to lay Addi on the floor, and not have to worry about the other two pulling out her NG, but they just kind of crawl all over her now. They don’t yet understand that they need to be gentle with her. They pull each other down and climb all over each other, so they think they can do the same to Addison. Poor baby gets beat up sometimes. She does love to watch her sisters though. All in all, it has been a pretty normal couple of months, which has been a nice change of pace. 

Home Again, Home Again

Quick update: Addison got to come home today. We got to stay in the hospital one more night than planned. That extra night just ensured that she was tolerating her feedings. By the time we were discharged, she had 24 hours of feedings under her belt. She did great with her food. No problems at all. She was in a lot of pain the day of her surgery, but she started taking Tylenol on the day after surgery and that’s what we are still using. She’s a champ; she had Tylenol twice both yesterday and today. I think that’s pretty good considering she had surgery two days ago. She’s a tough nut to crack (ahahaha, because we call her peanut, get it?). {Side note, I might be a little slap happy and tired from working four out of five days before surgery and sleeping on a hospital pull out bed for the past two nights. And, you know, stress.} Anyways, Addi is doing great. Her g-tube site looks perfect. She has had zero problems with feedings. Her pain has not been difficult to control. All in all it was a smooth surgery and recovery and we are very thankful for that. It is nice for all of us to be home together. I hadn’t seen Violet and Oriana since Tuesday night. I think Addison is happy to be home as well as she’s currently passed and snoring a bit in the pack-n-play next to me. We go to get her g-tube changed for the first time in 6 weeks and I think we are supposed to follow up with the surgeon in about 4 weeks. Thanks again for all the love!

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She was full of smiles the past couple of days.
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Ryan will be mad that I posted this. He’s always yelling at me for taking pictures of him sleeping with Addi, but I can’t help it. They are just so cute when they are both passed out.

Oriana – 17 Months

Our little sunshine baby has finally started feeding herself. Oriana took her sweet time to start doing so, but she’s got it down. She is walking all over the house. She has always had really good balance and that helped her out a lot. She walks around the house and talks (and eats, if she’s having a snack) all day. She is also finally off formula completely. She’s going through a bit of a Violet phase in that we sometimes have to bribe her with puffs to get her to eat her actual food. She loves stuffed animals; she hugs and cuddles them and it is the cutest thing I have ever seen. She always takes one to bed with her. Oriana has started to figure out that cuddling is not so bad. She likes to sit and rock and lay her head on our shoulders. There’s nothing better than baby cuddles. Oriana babbles all the time. She’s not doing a lot of real words yet, but I’m sure it will be soon. She does lots of dada and some mama, nana, and baba. She really sounds like she’s trying to say something sometimes. I have no idea what that something is , but it definitely sounds serious. She still thinks that music and dancing are pretty great. She has also been very into reading lately. She will bring me a book and demand that I read it to her multiple times. All in all, Oriana’s doing great and she’s right on track developmentally for her corrected age. She’s such a sweet girl.

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Walking around, eating Cheerios
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So sassy
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Silly sideways baby