Just a little ray of sunshine

Just a little ray of sunshine

Thursday, September 20, 2018

Bruised and broken


Our sweet little Rowan has had a tough go with his health the last few weeks. We spent Labor Day weekend at my sister's house picking up our new puppy and had a great time. Unfortunately, during the following week I started noticing some lots of bruises on Rowan. He had taken some falls and such as a new walker on our hard floors so some of them were explainable but it just seemed like he had more than he should and in unusual places given all these falls. He was acting like his happy self so I brushed it aside for a day or two but it with every diaper change it seemed like I found 5 new bruises. They were everywhere - in addition to his legs and arms there were some on his head, face, belly, back, sides, and even his feet! I also started noticing some red spots all over his belly and face that looked like blood vessels had burst under his skin. I knew something wasn't right at this point so I called the doctor on Saturday. They were worried about his platelets being low so they told us to go to the ER. We weren't thrilled at the thought of that, but it was the only way to get his blood tested and get answers quick. Of course before we left for the ER he fell into the side of the armoir in the playroom and instantly had a big purple hematoma on his head and you could see the bursted blood vessels underneath. 😢 At this point we couldn't get out the door fast enough!

At the ER, we were helped right away and they had us put him in a gown and they put an IV in to do all the blood tests and it was just awful. He was beside himself on the hospital bed and it was so sad for us to see. Adam and I both lost it, despite how hard we were trying to keep it together. 😢 A friend came to pick up Maeve which was such a blessing and then we waited 45 minutes for results. Luckily Rowan was happy eating snacks at this point!

When the doctor came back, she told us that his platelets were indeed very very low. A normal level is 500,000 and he had less than 5,000 in his blood. She told us he would have to be admitted overnight and do more blood tests to figure out what was wrong. She also specifically said that he would be moving to the Hematology/Oncology floor with all the other kids that have cancer, but that that didn't mean he has cancer too. I never thought these words would ever have to come out of my mouth, but I replied "So he definitely doesn't have cancer right?" - all the bruising had immediately made me worry that he could have leukemia - and she responded "I can't say that for sure, but everything else in his blood looks like fine right now so I don't think so". That was reassuring, but I still couldn't help but pick up on the fact that there was a small chance it could be.

Since we knew we were staying overnight at this point, and since Rowan is a daddy's boy, we decided I should be the one to leave the hospital and take care of some stuff. As the mom, it was hard to not be there, but I knew Rowan would be happier with Daddy so I left the hospital to go home and get our dog and bring her and some stuff for Maeve to my friend that had Maeve with her. Bless Danica's heart for being so willing to take Maeve and our dog for the night! Luckily she loves puppies and has a daughter Maeve's age and they are best little buds so it was perfect. We felt so blessed to have that option and that she didn't hesitate to help! In all my driving, I had a lot of time to really let what was happening sink in and I lost it. Since we didn't have any real answers yet it was really hard to not think of the worst and how that would affect our family and day to day life! 🙁 

I was hoping to make it back to the hospital before the Hematologist got to Adam with a diagnosis but I missed it. So Adam let me know what was going on and the Hematologist was pretty certain he had a blood disorder called Ideopathic Thrombocytopenic Purpura (ITP). Basically, this just means the immune system attacks the platelets and makes the child more prone to bruising and bleeding. They don't really know what causes it, but likely it can happen in response to a virus or infection. He was never sick that I knew of but who knows! ITP typically resolves on its own but it can take up to a year before levels are fully back to normal. Given his age and that he is a new walker prone to injuries from falling, the Hematologist strongly recommended treatment so we opted for that. 

Once I got back to the hospital at 11:30pm Rowan was getting his vitals taken before starting the treatment. They had to put a clamp on his toe for that and every single time he just HATED it! Adam had rocked him to sleep and he had only been asleep for 10 minutes before they came in to take these vitals and it woke him up and he was so angry! I felt so bad for him that he had to deal with all this prodding while he was so tired and out of it. 😔😢 They gave up on getting his vitals since he wasn't cooperating and just decided they'd start treatment without doing so since he seemed fine. They let me take him out of his crib and rock him and he fell asleep instantly on me which was such a sweet moment for me since that has not happened in a long long time! I just gazed at his sad looking little body and face and just hoped he'd be okay sooner than later. 

Soon after Adam took this picture the nurses came back in and decided to try his vitals again since he seemed to be sleeping so soundly on me at this point. Poor boy was worn out! It totally worked and then they started his treatment - he got IVIG which is immunoglobulin through an IV. It was slowly administered for 4 hours while he slept and he slept through it all! We were so grateful. We got fairly good sleep too, except I did wake up any time they'd come in to check vitals during those 4 hours and also occasionally I'd hear other babies crying which was so sad. Overall though we felt rested in the morning and Rowan woke up happy! When they took out his IV before they let us leave it just bled and bled. It took probably 10 minutes before the nurse could stop applying pressure and it had clotted enough. Poor boy! We got discharged at 10:30am and were happy to be able to go pick up Maeve and Zoey and go home. Our next follow up would be at the cancer clinic in the hospital the following Thursday to check his counts again. 

I couldn't help but still feel off that whole day. I was hoping the worst was behind us, but they did say sometimes the treatment doesn't work as well as expected and has to be done again. They also said he'd continue to bruise easily and such so I felt like I had to really watch him and be near him all the time.

My friend from Raleigh texted me on Monday and asked me if she and her hubby and baby could come stay at our house if they had to evacuate because of Hurricane Florence. I felt like company would actually be nice since we love these friends and so I happily told her they could come. They ended up coming on Wednesday morning and it was such a blessing for us. Now that more time has passed and we've gotten more news, I see that it was no small coincidence and a tender mercy that this Hurricane and health issue for Rowan happened at the same time! Her husband loves to cook and wanted to cook every night for us and they helped with Maeve for Rowan's follow up appointment so I didn't have to drag her. 

At his follow up appointment last Thursday I was expecting to hear good news since the week had been uneventful and I wasn't seeing too many new bruises. Unfortunately, they got his counts and told me that his platelets had only bumped up to a 7 from a 5. This basically meant the treatment didn't work, because if it had, they would have been up to 50-100. His neutrophil white blood cell count was also low now too, which could be a fluke or related to infection but it made the Hematologist wonder if the ITP diagnosis was correct. She said she was still 95% sure but she said that she'd want to check him again in a week and if both the platelets and white blood cells were still low she'd think it could be leukemia instead. She followed that up with "I'm not trying to scare you, I just want to be transparent - I still am very confident it's not that, I just want you to know everything I'm thinking" and I couldn't help but start crying. I kinda couldn't believe I was sitting in a room having this kind of conversation with someone about my innocent oblivious little 1 year old. 😢 She really was so nice though and did put me at ease as best she could! I left the office being told to just watch and wait because she didn't want to do any further treatment without seeing what would happen with the numbers in one more week (which brings us to today). This is why it was a such a blessing to have our friends with us through this time as a distraction. They were so helpful and helped pass the time much quicker! 

Rowan did fine this past week, but on Tuesday he took a really super long nap and woke up from it with blood on his sheets. I took his binky out of his mouth and there was blood around his mouth. Considering this was spontaneous bleeding, I called the doc right away and they said to just watch him and if it happened again to call and they'd probably want him to come in on Wednesday instead to get counts. On Wednesday morning, there was more blood on his sheets when I got him out of his crib and a little bit of blood beside his mouth and a new bruise on his lip. I looked inside his mouth and saw a couple little blood blisters. I called the doc again and the nurse said she'd page the doctor to call me but that she'd probably want me to come in that day. I waited ALL day and did not ever get a call back. I was so frustrated and had called to check in and see what was going on and they just told me there was no telling what she was in the middle of but she'd call me as soon as she could. I kinda couldn't believe she didn't call me before the office closed and wondering if the page even went through. I knew Rowan wasn't in serious danger or anything so I just figured it wouldn't hurt to wait till the next day to recheck everything. 

This morning, the doctor called and apologized profusely because for some reason she didn't get any of her pages from the day before. Oh well! I was at least glad to know that was what happened and that she didn't just forget to call me or something. 

From the minute the doctor saw him at his appointment today, she knew his platelets were still really low. This didn't surprise me either, given the spontaneous bleeding that had happened this week that hadn't happened in the previous weeks. He was also still getting a lot of new bruises. She told me she wanted to see his counts and look at his blood before ultimately deciding what to do next, but it would likely be steroid treatment. When she came back in after looking at his blood and his counts, she told me that the white blood cell counts were back to normal and that everything about his blood pointed to an ITP diagnosis so she was confident that's what we are for sure dealing with! I was so relieved to hear this. Unfortunately though, this means we are stuck doing the steroid treatment, which she hates to prescribe unless she really has to. It makes all patients very irritable, angry, and starving the entire time they are on it. Doing nothing though could ultimately result in him having bleeding in his brain, so this is really our only option at this point since the IVIG didn't work. Any other treatment option would have even more aggressive side effects. So starting tomorrow morning, he will be on this steroid treatment for 5 days and we are hoping it works. It should clear up the bruising and bleeding, but still may take a while for his platelets to bounce back up. I feel so sad for him that he will have to suffer through this, but I will gladly take 5 days of misery over a serious long term battle. Both times I stepped foot into that cancer clinic my heart just sank walking past the little kids that looked lifeless sitting getting their treatments. I just can't imagine the pain and heartache I would feel if that was my little 1 year old boy! My mom will be coming to help tomorrow night, which we are very grateful for, so we are counting are blessings right now and know that the big man upstairs is watching over Rowan and all of us. We know sweet Rowan will be a fighter through all of this!! For now, I am praying and clinging onto this happy smiling little face below. ❤️🙏





Thursday, July 5, 2018

Camping with children 101

At the end of April we got our first taste of camping with children! I previously thought this was impossible with a baby until I saw a friend do it and she said he got a tent big enough for a pack n play. Adam and I fell for each other on a camping trip so we have always enjoyed camping together! We decided to take the plunge and get a big tent so we could try it out with our kiddos. We also thought a well planned ward campout would also be a good opportunity to test it out. Luckily some of our other friends with kids also braved it so we had a lot of fun hanging out with them. There was dinner, a scavenger hunt for the kids, and we had a campfire and then the young women serenaded us with campfire songs.

These boys in their maching hoodies with ears 😍😍

This pic turned out pretty cool with the light shining through. Maeve and Addie are standing to the left of the light admiring the young women performing! 

After the official program ended, a bunch of people stayed around the fire and made smores and such. We brought fancy flavored marshmallows - maple flavored and coconut flavored and they were sooooo good roasted! We also roasted starbursts which are quite delightful too.

Chowing down on their smores together in their little pink camping chairs 😍😍 - their faces kill me in this pic, obviously the flash threw them wayyy off 😂

Daddy was excited to help her and show her how it's all done! She was quite thrilled to experience it all. 😄

Don't mind Rowan's flailing legs and orange nose 😂 or my pasty skin.... Still one cute happy family camping 🤣

Once kids needed to go to bed, plenty of people started disappearing. We got our kids in bed at 9 and asleep in probably half an hour and once we left the tent again just a few people were still by the fire. We were surprised not only by how many people left and didn't even camp for the night, but called it a night early and headed to their tents! By probably 10pm it was just us out but we enjoyed the dark cold quiet night by the fire together chatting until probably 11:30pm. It was such a fun change from our norm and definitely brought back lots of camping memories.

The fire was looking so pretty 

Once we headed to bed that's when it all started getting less enjoyable. I could not sleep because I was sooooo cold! Luckily the kids did great, but until 3am I was tossing and turning just trying to warm up and nothing was working despite all my blankets. Then Rowan woke up to nurse and I wanted to die thinking about exposing my boob in the cold, much less get out of my sleeping bag to even grab him 😨😨 - it was tough stuff and in those moments I really wanted to secretly be back home! 😂 Maeve woke up too hearing Rowan and once we got him settled we moved her near us and instead of being in separate sleeping backs we opened up everything to be near each other's body heat and piled all blankets on us including hers too. Luckily then I was able to get warm enough to sleep! If only we had done that sooner... 😩 Nonetheless, the sun woke us all up at 6:30am or so, so it was a lovely 3 hours of sleep. We kinda wanted to die at the thought of getting up so we lounged for as long as the kids were happy lounging and ate poptarts (of course - Adam and I both coincidentally brought our own poptarts for breakfast when we first went camping together, so naturally that has been a tradition ever since)!

Morning faces 😍

Adam was enjoying Rowan climbing all over his face - a great wake up call 

Adam was a beast to put this huge tent together successfully almost by himself 💪

All in all, it was a pretty successful first camping trip as a little fam, but next time if it's cold I'm bringing seven million blankets. ✌️😅

Tuesday, July 3, 2018

April Photo Dump

It's been a while and today I kicked my butt into gear and decided to knock some blogging out. I am determined to not fall so behind I just give up and stop blogging. I WILL catch up, if it kills me! I am seriously wanting to cry right now though because I just spent an hour working on this post and then lost everything.... So now I'm starting over and writing it all for a second time. 😭😭😭😠 But anyways, it's been some time since I have done a good photo dump so here's the greatest pics from April.

Just doing a little grocery shopping when I glanced over at this hand placement 😂😍

These baby seats are genius and should be in every single bathroom! Kroger wins for having this in its big stall because seriously I don't have seven hands to hold my this baby and help his toddler sis go potty at the same time! And it kills me how dang cute he looks sitting in it. #winning 😍

Oh man does this boy loooove his Daddy! Probably over the last month he has become especially expressive and makes it clear that he is angry and cranky if Adam is not holding him or paying full attention to him after he gets home from work every night until bedtime. It is the sweetest bond to see! I can't blame him for it because he's clearly the fun parent 🤷‍♀️😍

I can't even.. 😍😍

Baby kisses are the best kisses! 💋

After being obsessed with it at her cousin's house we splurged and bought the Cupcake game! We play it a whole lot around here and she still loves it just as much so that's a big win! 

She also went through a period where she was obsessed with doing these peppa pig puzzles on repeat all by herself and I loved it! Here she is proudly showing her work. 😍

The important part of this picture is the toy ring on that somehow found its way to his thigh! 🤔 It's pretty funny because Maeve used to do that too with this toy and it cracked me up. Like sister like brother! 😂

Can I get some more where that came from? 😂

One of the last weekends in April we took did a ward campout (which will get its own post) so to prepare for this we did a trial run of camping out in the living room. It was a big hit for Maeve - I mean, who wouldn't want to lounge in a comfy sleeping bag and watch a movie?! She pretty much hung out in there all day when we were in the house and then did in fact successfully sleep there at night too! 

Still napping spontaneously on the couch from time to time 😍😍

I'm adding this picture in because 1. That little face and 2. The poor boy can't eat in peace without his sissy messing with some part of his body 😂

This is when he started perfecting pulling up on furniture and I couldn't get over this proud happy face! 😍

Nothing but trouble 🙄

Signature sib pose = the chokehold. 😂 Maeve's first instinct is to always do this if I ask her to put her arm around him and luckily he takes it like a champ! They were matching so I had to try and get a cute shot, ya know. 🙄🤷‍♀️

She's perfecting the art of the selfie one selfie at a time - I saw this one and laughed at her on the angle of the picture. 😂 Almost there sis! 

She got a tattoo in her Easter candy from an egg hunt and I incorrectly thought it was a sticker for a while. Once I realized I was wrong, we had fun trying it out! She thought it was pretty stinkin cool and was excited to show it off, cute smirk and all. 😍

Tell me you've seen a better, cuter, more joyous picture before. TELL ME. That's right, you haven't! Impossible. 😍😍😍

I mean, I just can't even... He dies for those tickles from her any day 😍❤️

Turning on that flirt. He knows what he's doing! 

That cheesy gummy grin though! 😂😍😍

Just a perfect little face that I munch on constantly 

She was obseeeesssed with this puzzle for a while. The first few times she needed my guidance and direction but this was the first time she did it herself without any prompting! She was quite proud of herself and that happy pretty little face is life. 😍😍😍

She could hardly contain her excitement! 😂

Best seat in the house I guess - interestingly enough that vacuum hose broke right around that area a short while later. Hmmm I wonder why... 🤔😑

That little body in those jammies. Delish! 

I see this picture and for a moment I feel like she's still my little baby 😍 - definitely still has some baby fat! 

Oh man, I have to include this picture because I about died this night. Adam went shopping and came home with a new shirt that we you can see is almost identical to a shirt he already owned. I asked him why he got it because of this and he couldn't seem to remember he had one so similar. I pulled it out to show him and I mean, come on, could you justify keeping both?! I couldn't, but somehow he was able to and we definitely both got a good kick out of it! 😂

The love shared amongst these three is real! It is not uncommon for them both to be in his lap or cuddled on either side of him one he is home from work every night. I don't complain about the break for one minute and I also think it's pretty dang cute. 😍😍😍

It's blurry, but I just had to show those happy happy faces! Daddy gets some of the best smiles to come out!! 😍❤️

Had to include this one because I have the same pic of Maeve at this age resting her foot on that bar - I guess it's really just best used as a foot rest 😂

These little friends are too much! I can't get over the series of pics I got - they sure love their zoo trips together and are best buds 😍

👭

No shortage of laugher when Addie is around! 

Too much cuteness 😍

Addie was definitely the peer pressure (in a good way) that got Maeve to finally try this bridge and even walking it herself! It took some persuading for sure. 

My work as a mother has now been cut back substantially 👌

We said goodbye to his infant carseat! I found a good deal on this so figured we might as well switch over. Just a month sooner than his sis switched! 

Maeve's little stance is killing me here. She actually threw up right as we got to the park this day and on the way home. 😩 But you wouldn't know that looking at this picture nor by how happy she was while we were at the park! She insisted she was fine enough to stay. 🤷‍♀️

Because why not play in the old basket that Mom emptied out. 🙌

It's a pretty good fit, really 😍

I can't even take his lips and eyes in this picture..... 😍😍 - I could eat him! 

Terrible lighting but she just looks so big and I love that happy smile. Doesn't take much to get it out of her! 

First time doing a little braid! I can't get over how tiny it is, but it works and she looooooves doing braids now. Must always be like Elsa! 

Rowan was making himself at home with the big kids in the McDonald's play area. The best part is Maeve doesn't know any of these kids but is always so quick to make friends and play with anyone around. She always says "Hi, I'm Maeve!" and they don't often respond with their name so she just refers to them as girl or boy the whole time she plays with them 😂🤷‍♀️

He loved that little tunnel and even marked his territory by throwing up in it 🙄

Such a comfy position she chose to sleep in 😂

Oh man, he thinks he's so big when he's standing and loves flashing that smile! 😍

Okay I just can't... He nicked his nose and was bleeding and I didn't want him to get blood on his crib sheet so I put a bandaid on. It is crazy he let me put it on and even crazier he didn't try and take it off! It was totally cracking me up looking at him with it on. 😂😂 Don't mind that it takes up half his face!

Too much sweeteness 😍

Sibs who swing together stay together 😜😍

And that's enough for now! I only accidentally erased different captions 473837 times before getting to this point 🤦‍♀️ BUT I'm in the clear now. I guess I shouldn't be doing this on my phone... anyway, stay tuned for photo dumps from May and June. Peace and love!