9 Months and Counting!

To say that time is flying by is an understatement! Where is it all going?! I cannot believe my little guy is already 9 months old. So much has happened in the last few months, some not so good, but mostly, it has been a pretty amazing few months!

The biggest update in our lives is that Rylan can finally have food orally!! YAY!!! He had a swallow study on May 30^th at Children’s, and he did amazingly well! They started him off with formula in a bottle, and while it threw him through a loop to have liquid coming out of something that resembled his binky, after a few tries, he drank. He had 6 swallows with no aspiration! Next up was puree’s. He had sweet potatoes, which is the first food he ever had in his life, and wasn’t too thrilled. He was so confused to have something coming towards his face and into his mouth. They had to sweeten it up with kool-aid, but they were finally able to get 3 bites in, and with those bites, he swallowed all 3 successfully with no aspiration! He did have a few episodes of passive swallowing, where he didn’t actually swallow, gravity took over and made its way to the right place. We were cleared to work with his OT to start feeding therapy and introduce puree’s to him. They told us that it would probably be a few months before he would fully eat as babies who have not been fed orally have a learning curve. This kid has blown that out of the water! He did so well with his OT, that after a week, we were allowed to start feeding him at home. It has been over a month and this kid is a champ! He has done so well, we had to back off his feeds a little so we were not over feeding him. To date, he has had and like the following; sweet potatoes, apples, bananas, butternut squash, pumpkin, pears, green beans, spinach, zucchini, peas, apple cinnamon granola, and blueberries. This chunky monkey likes to eat! Not only that, but he is also drinking formula by mouth with either his honey bear (sippy cup) or a real cup. We are beyond proud of him and how far he has come!

The only little set back he has had was the unfortunate fall he had while on the bed that resulted in a break in his femur. D was watching the little nugget who has learned to roll himself all over, and he took his eyes off of him for just a moment and he rolled himself right off the bed. He hit our bed frame just right and broke his femur. We spent several hours at the hospital and they put a splint on him and referred us to ortho, but not before tell us of the possibilities of casts that were horrifying. I was a bucket of nerves as I sat in that ortho room waiting to hear the outcome. After reviewing scans, they said he is doing so well that they only need to do the splint for 4 weeks. We go back after that to follow up with more scans to see if he is doing well. If it all goes well, we do his surgery for his boy parts on the following day.

Our family had the absolutely best time in Disney in May, it was better than I could have hoped for. The kids did so well, I was so proud of them for their patience and behavior. Rylan did amazing and A had a blast! We learned a few tips before we left that helped so much, so I thought I would share them here to pass them along, if they apply to you. First, ride switch….the coolest thing there! When you have 1 kiddo and a baby, it is really hard to ride some of the older rides without someone missing out. Ride switch took care of that! You scan your ticket when you and kid get on the ride. After the ride, the other parent gets to skip the line with the kid and ride again. No one misses out and the kiddo gets to ride awesome rides twice…win/win! Next, stroller/wheelchair access. Because of Rylan’s tube feedings, we use his stroller as a wheelchair. Our first stop in Disney was to the town hall where we got a little red tag that allowed us to bring his stroller around as a wheelchair where most stroller access was denied. Not only that, but we got to use the mobility access for rides and that cut our waiting time in half. Another win! The biggest tip I would offer….splurge on Max Pass. It allowed us to book and schedule rides so we didn’t do a ton of waiting and we got to do nearly every ride in Disney. Well worth the money.

We have been blessed by so many things this month, I am beyond grateful. But I will also say, this has been the hardest time of my life. On June 9^th, my beautiful and wonderful Grandma passed away. I hadn’t dealt with death much in my life. My stepdad passed when I was 12, and other than a few family friends, I haven’t really had to face death like this. She has been hit with a lot of health problems in the last 10 years of her life, and a stroke she suffered in April was something that she just couldn’t recover from. She fought so long and so hard, but it was finally her time to be free of pain and suffering and become a glorious angel. I miss her every single day! I am most grateful that she got to meet Rylan. She loved Rylan so much! She called him her baby and asked about him constantly. We were lucky enough to see her a month before she passed, and video chat several times after. I hold her close to my heart and will always make sure that Rylan knows about her and knows the love she had for him.

I will end this update as I have written far more than I planned. Can’t wait to see what is in store for us in the future, and share the many wonderful milestones our little man will have!

7 Months ALREADY?!

Wow….time really does fly by when you have a kiddo! I cannot believe that my little bug is going to be 7 months old in just a few days!! So much has happened and he has gotten so big right in front of my eyes, it’s crazy! Seeing as how my last update was in January, I have a lot to catch up on!

Rylan is doing fantastic! He is gaining weight and getting bigger by the day. He is 15 pounds and 25 and a half inches long! He is in size 6-9 month clothes and is officially now in the 4^th percentile! YAY! Developmentally he is doing great! He babbles a lot and is full of smiles and giggles. He is also getting some great belly laughs in. He plays little games with us like peek-a-boo,  and a sweet but slightly annoying fake cough thing he started a few weeks ago! He can almost sit up unassisted, and he loves tummy time but it still a ways away from crawling. However, he is right on the cusp of rolling over! He has developed attachments to a few of his favorite things! He loves his binky, it is his buddy. He will suck on it and then play with it and chew on it like he is a puppy, it is so freaking cute! We added a pacifier clip to it and he loves it. He loves to have soft things by his face when he sleeps. I think it was from when he was in the womb, but that is the one sure way to get him to sleep. He loves this little crinkle Llama book squeaker toy thing. He can spend an hour on it and still love it the next time he sees it. One of his absolute favorite things is this Finding Nemo play mat that lights up and sings. He really could spend forever under there. Money well spent!

Medically, Rylan is doing good, but gearing up for some changes in the near future! We have a repeat swallow study scheduled May 30^th to see if he can start solids! I am hoping and praying daily that he can and that he passes! And in July, he will have surgery to bring down his undescended testicles. Poor little man has had a rough start in life, but man is he a trooper! That little guy is so strong and impresses me every day! I am so proud to be his mommy!

For the rest of the family, we are doing amazing! In May, my stepdaughter will be graduating 5^th grade and will be going into middle school! AHHHH! INSANE! For a birthday and life celebration, we are taking her and Rylan to Disneyland and Universal Studios at the end of May. We are all so excited! We haven’t told her yet, but will be telling her on her birthday on the 23^rd. D has been doing great at his job and recently got a promotion. I have been remaining active in my job and have been busy with that and the kiddos. Life has been crazy and busy, but I wouldn’t have it any other way!

I am so excited for the next few months and can’t wait to experience all of the wonderful things that little man brings to our life!

Twists and Turns

To say that things have been crazy is an understatement! I was prepared for motherhood, or so I thought, but I was not prepared for this! Get ready for a novel, because it has been a LONG 3 months!

Things were going great and my maternity leave was becoming a lot more enjoyable after getting into a solid routine. We would start the day with a feed in the morning followed by an hour or two nap, sometimes for the both of us! He would wake up and we would do another feed and then spend an hour or so playing in his activity mat or just making silly songs and faces to try and get a smile. He would pass out soon after, and allow me some chore/shower time. He would wake and then feed, and then it was nearly time for everyone to be home. The nights were split between loving on mom, dad, grandma, and sister. Late nights were a bit rough as it was difficult not to worry and stress if he was breathing, and then when I did manage to fall asleep, he would wake me up soon after to feed. And then we would start the whole day over again. We mixed in some outdoor walks, Rylan and Mommy dates out on the town and lots of cuddle time in between. They tell you that those 2 months fly by, and they sure did! My maternity leave was over before I knew it!

I went back to work shortly before he turned 2 months. My mom had been laid off from her job and offered to watch him for a few months until the new year to allow us time to save for daycare. I always said that I didn’t think I wanted to be a stay at home mom, that I wanted the kiddo and the career…..I.was.wrong! Going back to work was the hardest thing I had done. I cried the whole weekend before, and that morning, and all through work. It was miserable, but a lot more bearable since I could call and video chat when I was pumping throughout the day. He went from EBF to bottle fed with breast milk, so I pump 3 times a day at work to maintain his supply at home with my mom. Here is where everything fell apart.

A week after getting into the new routine of working and my mom watching him, he began to act weird during feedings. My mom and I noticed that he was choking a bit on his bottles. I consulted the pediatrician and she said that he probably has acid reflux since he had other symptoms led her to that diagnosis. They gave us Zantac to start on right before Thanksgiving. That weekend, he and I went for a little day date and went to the mall and a few other places to Christmas shop. We went to the nursing room at the mall, and during his feed, he started to choke a bit. I was frustrated because we had been giving him the Zantac, but we did skip a dose, so I brushed it off. On Monday November 26, before I left for work, I fed Rylan as I do, and he choked a couple of times. It was only for a moment or two, but caught his breath, cried for a few seconds and then went back to eating. I told my mom about it and then left for work. Around 10am, she called me and said that he has been choking non-stop during his bottle feed and it worried her. I told her that I would call the pediatrician and she told me to wait, that she would see if he was just congested. About 10 min later, I got a call that shook my world. She told me to call 911, that he was choking and having a hard time breathing. My heart dropped and I instantly felt sick and panicked. I grabbed my work phone and dialed 911, but got a message that they had a high call volume. I slammed down my phone, grabbed my purse, cell and keys, frantically told my boss that I was leaving and why, and flew down the steps to my car. As I was rushing out, I called again and it turned out my mom did to and there were already paramedics at the house. When my mom called, he stopped breathing, went limp and his eyes rolled back. The dispatcher helped my mom get his breath back and the paramedics showed up instantly and gave him oxygen. After I got to the house, they told me he was doing good but still needed to go to the hospital. We got everything together and headed to Memorial North, where I gave birth.

After waiting at Memorial North for 2 hours, they told us that he needed to be seen at the main location downtown as they had a pediatric wing, so that’s where we went. After a night stay in the hospital and a swallow study later, we found out that Rylan was silently aspirating every consistency of liquid, from thin like breast milk, to really thick with additives. The esophagus and trachea (windpipe) are right next to each other and when we was eating, some would go to his stomach and some would go to his lungs. They deemed him not safe to eat by mouth and told us he needed to be on a feeding tube for the foreseeable future. That was devastating! My heart broke for him. My little man has been through so much in his short little life, and this is the last thing I wanted. We spent a total of a week in the hospital and had several tests done and met with several specialists to see if there was a reason why. Everything came back inconclusive. He wasn’t at the weight he should be (At 2 months, he was 9 pounds 6 ounces) and because the feeding tube placement required surgery, he had to wait 2 weeks to get stronger and gain more weight. So we left the hospital with an NG tube (Tube going from his nose down his throat to his stomach) and returned 2 weeks later for his G Tube surgery.

I am so proud of how well my little nugget is doing, he is so strong and so brave and I love him so much! He has been doing great with his tube, and is now 10 pounds 1 ounce and growing! We celebrated his First Christmas and First New Years by seeing Santa, getting family pictures, looking at Christmas lights, going to Church Candlelight service, seeing family and friends, and just spending time together and loving up on him!

As for development, his is rocking it! Little man can hold his head up great, talks a ton (coo’s and grunts), smiles, and has even laughed! He can grab things, including his binky and put it back into his mouth. Even though my son is now special needs and life has taken us down this path we are currently on, I wouldn’t trade it for the world. I love him so much; I would go through anything for him! We have appointments with specialists that will help us create a plan for his future, but I hope and pray that he doesn’t have to be on this feeding tube for long. I want him to have the best and brightest future possible and live life as a normal baby. He deserves the world and more!  I will try and be better and updates in the future, I’m just lucky enough to find time today to write this!