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…

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.

Superkids

Yes, I have a special needs child, who is one of three. Yes, my life is hectic and stressful and my to-do lists never seem to end. I have very little “me time.” My needs almost always come last and I’m generally exhausted. But my life is also beautiful and blessed and I wouldn’t change it. But I digress from my point, which is this: I am not a hero, I am not amazing, I am not incredible. I am just a mom. I am just doing the same thing any other mom would do if she were in my shoes. You don’t know how I do it? You know what? Some days I don’t either. You just do what you have to do. When you have 3 little people depending on you, you don’t have much choice. I get through the day the best I can. Some days I do better than others. Some days I have very little patience, and some days I am calm as can be. Some days I laugh, some days I cry, some days I scream. But I am not superhuman. Most days, I’m just doing the best I can. Every mom wants what is best for their child(ren). I am no different. It is not always simple to meet the needs of a special needs child or even a “normal” child when you have more than one, but that’s what mom’s are for. Taking care of our kids is what we do best. And that’s really the point – I am just a mom, doing the best I can and hoping that it is enough. I worry that I neglect Addison because Violet and Oriana are more vocal and mobile. I worry that I haven’t had the time to do therapy exercises with her or put her braces on. I worry because there are days I don’t get to sit and hold her and she likes to cuddle. I worry that I neglect Violet and Oriana because simply feeding Addison and giving her medications is so time consuming. She needs positioned, she needs to stretch, she needs her braces put on, she needs to do tummy time, she needs a lot. The vast majority of the time it feels like nothing in our lives is simple. Doing anything with three little ones in complicated. Plus, we have to time things around Addi’s tube feeds or take all her feeding supplies with us. She sees a whole team of specialists every three months, plus regular pediatrician appointments and weekly physical and occupational therapy. Like I said, the to-do lists never seem to end. But seeing that little girl make even just a little progress is totally worth it. Plus, there’s nothing better than when she looks right at me and gives me one of her rare smiles. Seeing all our girls grow from tiny little preemies to mostly healthy, and definitely happy, almost 2 year olds has been amazing. So, the point is, my kids are awesome and inspirational; I am not. I’m just hanging on by a thread, hoping to make it through another day. Don’t take this the wrong way; I know people mean well when they say these things. These are just some of the things that run through your brain when you hear theses phrases said all the time. I’m just telling you how I feel about it all. And it’s not me you should be in awe of.

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.