...3/30/17...

We are HOME! 

 

Wyatt is happy to be home and we are happy he's here. 

...3/26/17...

We were so close! So close to beating our record of staying away from the ER/hospital (other than doctors visits, we don't count those) for 12 days. 

 

But.... we didn't. Turns out, Wyatt loves his peeps at JHH. 

Last night Wyatt went to bed and had significant episodes of desaturations- levels in the 60's (normal is 95-100), coughing fits, and wouldn't bounce back up with repositioning or nasal suctioning. All of these are worrisome and reasons to head to the ER. Because we have been here so often, we are pretty adept at knowing the plan. Wyatt needed a chest X-ray, some bloodwork, and some good ol' deep suctioning with the nasal catheter (yes, it sounds as bad as you might think-- but it does the trick and gets all the gunk out of his chest). He had been sick most of the week with viral junk and so was I, so we knew it was a matter of time. 

 

Well, we ended up in the PICU. His CO2 levels were really high, at 62 (normal is 35). So we knew we would need to do some suctioning and play with the settings on his BiPAP to help force out the CO2. That's a lot of attention for a regular floor, so we were sent to the PICU. Totally not our favorite place, but we understand it's where he needs to be right now. So for tonight, we will spend another night in the PICU. Well, Daddy and Wyatt will-- Mommy has dog duty tonight, which also means king sized bed all to herself, well, and the two four legged creatures who think it's their bed and really only share a portion of it with their humans! 

 

So we will spend a few more days looking at ways to support our little guy and cross our fingers for a quick return to home. He's got big things to do like practicing his crawling (he's not there yet, but he's getting close), get kisses from his dogs, and being super cute. 

...update, part 3...

So we left off with the bombed sleep study. 

Brian pulled him from the sleep study and took him to Hopkins ER. He was admitted and put on BiPAP (bilevel positive airway pressure), which is like CPAP used for adults with sleep apnea (Hi, Nana! We're looking at you!) or kiddos with other respiratory issues. The only concern with the BiPAP was the amount of air being pushed into his lungs to help him breathe would also introduce air into other parts of his body because the BiPAP is forced through the nose and not directly into the lungs. For this reason, we knew the increased air would have an impact on his stomach, causing issues with his feeds. Since he had a Nissen fundiplocation, a procedure to tighten the esophagus and decrease the amount of acid and bile coming up, he would have greater difficulty burping or getting the air out of his stomach. At that time the only options were to do oral feeds, which we knew was impossible, or switch his feeding tube to be a GJ tube. The GJ (G, gastric= stomach and J, jejunum= second part of small intestine) would be more like his ND tube (n=nasal d=duodenum, first part of small intestine) and we knew he tolerated that well. It would, however, mean another sedation and potentially some time in the PICU. 

 

First day on his home BiPAP, check out that giraffe print!

Fortunately he did okay with sedation and we were able to return to the regular floor, which is much more comfortable than the PICU. If you've ever spent any amount of time in an ICU unit, you'll know what I mean. So many rules. So many providers. So many alarms. So many really sick kids. And, the worst part for us, no bathroom in his room! I'm sort of joking, but sort of not. It sounds super ridiculous, but it's a really inconvenient part of the floor. That and no food allowed in the room, and you know I love to eat. 

This dude was so cute on Valentine's Day in the hospital. 

So, since November, our little boy has been through quite a bit. I believe we are at 50 some days of time in the hospital in the last 4 months. Phew. 

Despite all of the procedures, hospital stays, doctors visits, insurance phone calls, emails with doctors, etc., Wyatt is doing amazingly well. He's come so far and is the happiest boy you'll ever meet. 

 

Thank you for being on this journey with us. We appreciate each one of you. 

...update, part 3...

So we left off with the bombed sleep study. 

Brian pulled him from the sleep study and took him to Hopkins ER. He was admitted and put on BiPAP (bilevel positive airway pressure), which is like CPAP used for adults with sleep apnea (Hi, Nana! We're looking at you!) or kiddos with other respiratory issues. The only concern with the BiPAP was the amount of air being pushed into his lungs to help him breathe would also introduce air into other parts of his body because the BiPAP is forced through the nose and not directly into the lungs. For this reason, we knew the increased air would have an impact on his stomach, causing issues with his feeds. Since he had a Nissen fundiplocation, a procedure to tighten the esophagus and decrease the amount of acid and bile coming up, he would have greater difficulty burping or getting the air out of his stomach. At that time the only options were to do oral feeds, which we knew was impossible, or switch his feeding tube to be a GJ tube. The GJ (G, gastric= stomach and J, jejunum= second part of small intestine) would be more like his ND tube (n=nasal d=duodenum, first part of small intestine) and we knew he tolerated that well. It would, however, mean another sedation and potentially some time in the PICU. 

 

First day on his home BiPAP, check out that giraffe print!

Fortunately he did okay with sedation and we were able to return to the regular floor, which is much more comfortable than the PICU. If you've ever spent any amount of time in an ICU unit, you'll know what I mean. So many rules. So many providers. So many alarms. So many really sick kids. And, the worst part for us, no bathroom in his room! I'm sort of joking, but sort of not. It sounds super ridiculous, but it's a really inconvenient part of the floor. That and no food allowed in the room, and you know I love to eat. 

This dude was so cute on Valentine's Day in the hospital. 

So, since  

...update, cont'd...

So where was I? Oh yeah. He had his g-tube placed in December of 2016.  

During the time of his g-tube placement, he had some other hiccups including oxygen desaturations while he was sleeping. We were told they were likely caused by obstructive sleep apnea (OSA). OSA causes you to have a blockage in your airway, causing pauses in your breathing, and your oxygen saturation levels decrease. Typical pulse ox should be 93-100 and Wyatt was dropping into the 70's at times. Often in kids this is because of tonsil and adenoid issues, and is typically a reason to remove them. Typically kids with OSA (and adults too!) will snore, which is a big sign that something isn't right. The only way to diagnose OSA is through a sleep study and there is only one local pediatric sleep lab, so the waitlist was long. 

 

He had numerous hospital visits because of being sick and oxygen desaturations kept occurring because homeboy couldn't breathe while sleeping. You may also be wondering why they didn't just schedule a time to remove his tonsils and adenoids, since it's typically the first line of defense. Well, that answer is two fold. First off, we didn't have a real diagnosis because we couldn't get that unless we did the sleep study (even though EVERY doctor and nurse we encountered observed the OSA events) and secondly, he's really tiny. Tiny kiddos are not good candidates for digging around in their noses and ears because they are so small. So even if we got a diagnosis, they won't consider it until he's older and bigger. Additionally, we learned from the g-tube surgery that Wyatt doesn't tolerate sedation well. It took him a full 3 days to even fully wake up and one of those days was spent intubated because he was so groggy and couldn't wake up enough to breathe on his own. So for those reasons, we continued on with using a nasal cannula giving him oxygen when he was sleeping. 

 

Dude. This kid is CUTE. 

Fast forward to February. We were supposed to be on track for the sleep study in April. Well, we got a call in early February that someone had cancelled and they asked if we could make it that evening. We jumped on it. Daddy offered to take Wyatt to his sleep study so Mommy could work the next day. During the sleep study that night, Wyatt had quite a few desats and they were monitoring his CO2 levels. Things got dicey and Brian was woken up by the staff saying they needed to call an ambulance to take him to the ER. Well, then. That's our boy for you-- dramatic. Turns out the ambulance would be taking him to Sinai, which is NOT our home hospital and would delay care by the team who knows him best. Wyatt can only receive care at Johns Hopkins due to the nature of his conditions. We have learned the hard way that taking him to a facility other than Hopkins is dangerous because they do not have access to his entire medical history and because many facilities lack the pediatric subspecialty groups he requires. 

 

... to be continued...

...update...

Wow. It's been a year since I've posted. Over a year. So much has happened in the past year. Some good...some bad. Whenever I think about updating this space, I wonder if one day Wyatt will look back and say, "Gee mom, you really embarrassed me!" But I've recently realized that maybe this space was never really about him. I mean, sure the title is his name. It's ALL about him. However, I'm a gal who uses words. Words to remember things. Words to express my feelings. Words to FEEL. For that reason, I'm going to try and update this space more. I want to look back one day and remember just how far he's come. I want to remember the good. The bad. The ugly. Because each moment is a part of his journey. Our journey. 

  

Wyatt has grown SO much since you've last seen him. This photo was from Valentine's Day 2016. Just wait until you see him now. I'll save that for the end. 

What's happened in the last year? 

 

Hmmmm. (This was March 2016)

Well, Wyatt has shown us he's a man with his own plan. In November of 2016, after weeks of poor weight gain, lots of vomiting, and a never ending cold, we took him to the hospital. He was admitted and an NG tube was placed. You may recognize it from some of his early NICU photos. An NG tube is a nasogastric tube, feeding him through a tube into his stomach. 

 

You can see the tube coming out of his nose. This was in November of 2016. During that time, he had difficulty with tolerating feeds, showing signs of significant reflux (gagging, aspirating, vomiting) and they switched it to an ND tube. This is the same type of tube but instead of feeds going into the stomach, they continued the tube through the pyloris (a flap separating the stomach and small intestines) and into the duodenum. This decreased his reflux almost instantly. I know what you're thinking, problem solved! Nope. He LOVES to keep us on our toes. During this same time, he was having difficulties with his oxygen saturation dipping down when he was sleeping, so they sent us home with oxygen at night. 

 (Cranky after his first haircut and right before a trip to the ER)

 

Wyatt celebrated his first birthday surrounded by family and friends. He was so tuckered out from celebrating, he slept through cake. Which was probably a good thing since he couldn't really enjoy it anyway. 

Where was I? Oh yeah. Turns out an ND tube is really easy to pull out. After 8 replacements (2 of which were in Michigan at two different hospitals!) and a few hospital stays, they determined we would make the transition to a gtube. A gtube is a gastronomy tube. A gastronomy tube is a more permanent solution and would be less likely to get pulled out regularly. So on December 7, 2016, we handed our little boy over to the surgical team and a gtube was placed. He had some hiccups after surgery and required an overnight stay in the PICU because he's so dramatic sometimes (gets that from his dad, I'm sure!) and had a heck of a time recovering from sedation so he remained intubated overnight. He was then transferred to a regular floor and spent 10 days recovering. 

 

Straight chillin' after that surgery. He celebrated his first birthday at Hopkins, surrounded by some of his favorite nurses. 

 

On the left: one week old. On the right: one year old.

...To be continued...

...Blizzard of '16...

Have no fear, we survived (are surviving?) the blizzard of '16. We got around 24 inches of snow in our yard, 29.2 at BWI, which was a record. The most snowfall recorded in history at BWI. Insane. It started in the afternoon on Friday and continued through just before midnight last night. Anyway, on to the important stuff. 

This is how Wyatt spent most of the blizzard.

Let's see... since our last update Wy Guy has packed on the pounds, er, ounces. On Thursday last week he was up to 5 pounds 8 ounces! We were released last week from weekly visits to the pediatrician and instead will just be monitored by the nurse next week, then we'll check back in with the pediatrician the following week. 

That face. It melts my heart.

Last week we also had a visit from the occupational therapist. A referral was made to them because of the feeding issues he had in the NICU. She came out and gave me some things to work on with him in terms of developmental things like tummy time. She did notice he has a bit of a flat spot on the back of his head, but it isn't impacting in the front of his head. We will keep an eye on it and also work on positioning to be sure we balance it out. Our daily routine now includes time to work on positioning and playing on his kick 'n play piano. Tummy time in the traditional sense, which is typically on the floor playing, isn't working right now. Any time I try it with him, he screams. Super ironic because he loves to lay on his tummy on my chest and lifts his head up to look at me or turns to look around the room. Silly boy. 

That hair. And the $50k blanket from Hopkins. Shhh. Don't tell.
(We call it the 50k blanket because that's about what it cost for his time there...)

Please continue to pray that our sweet guy keeps gaining weight, continues to eat well, and has less reflux. 

Love,

Lori, Brian & Wyatt

Oh! These two are pretty cute, too. 

...1/16/16...

It's been another whirlwind week with our little guy. In case you didn't know, we are absolutely smitten with our little man, which makes getting actual things (like updating blogs, doing dishes, taking a shower) done throughout the day. I mean, if I have to choose between laundry and snuggling with this dude? Snuggling wins 100% of the time.

That face. It's just so kissable. Trust me. 

We had a pediatrician appointment this week for a weight check. At that appointment he was 4 pounds 15 ounces. So close to 5 pounds! On Thursday the nurse came for a weight check and guess what?! Our little dude weighed in at 5 pounds 1 ounce! There was a lot of celebrating seeing that 5 on the scale. It's so hard to believe our little man once got down to 3 pounds 9 ounces. When I scroll through photos from his first days of life, I see such a difference in his face. It's hard to believe that this week was my due date. Instead of celebrating a birthday, we are celebrating 5 weeks of life.

Left: 2 days old Right: today
Look how far we've come in just a few weeks!

Wyatt had his audiology appointment this week. Turns out our guy is too little for the hearing test in the office. The initial test they performed showed little to no activity, but the audiologist explained this is very common with babies because it tests for activity in the ear. If there is fluid in the ear, the probe cannot detect the activity. The second test showed activity in the inner ear. It was minimal, but there was activity. The big test was the one that could not be completed. We will return in a month to try the test again. At that time if it cannot be completed, he will be referred to the ENT. The ENT will then help to determine if there is fluid causing the issue and if there is, next steps for that. I had no idea there were different doctors working on different parts of the ear. Such a small part of our body, hugely important for sure, but has two different doctors working on it. Hopefully it's just a fluid issue that will resolve itself before we go back to the audiologist.

Such a sleepy boy!

As far as brady/apnea episodes, little dude seems to be doing well. If he has a brady, it usually is when he is eating. He has not had any color changes in a few weeks, which is excellent! It means his little body is getting stronger and more mature each day.

We found out this week we were denied the Synagis, the RSV medicine. It made me chuckle (the ONLY time I chuckled during the conversation with the insurance company) to hear the nurse say his heart defect is "insignificant". How ironic. Defect, by definition, implies imperfection or deficiency. I'm not sure how any heart defect is insignificant. Certainly there are defects that are much more severe, but his little heart doesn't work correctly. I have yet to speak with the pediatrician to see if we have a case to fight it or not. If we don't, it will mean that we will continue to be diligent about hand washing and keeping him away from as many germs as we can. I just happened to see a post on facebook about a former NICU baby who is back in the hospital because of RSV. I pray this is not us.

Catching flies while sleeping.

A couple of people have said it's difficult to get a perspective of his size by looking at photos. Here is some perspective. The pacifier in his mouth is a normal pacifier. It is approximately two inches in diameter.

Thank you for your continued thoughts and prayers. We are so lucky to have so many people in our lives who are following our journey. Please continue to pray that little man grows, grows, GROWS!

Love,
Lori, Brian & Wyatt

...update...

Phew. I thought we were busy going back and forth between home and the hospital, life with a newborn at home is just as busy! It certainly doesn't help that I would MUCH rather cuddle our little dude than sit down at the computer and whip out a blog post. I mean, he's just so cuddly and the computer, well, it's cold and not snuggly. However, I've heard from a few of you that you're dying for an update. Ask and you shall receive. (Although I suspect some of you really come here for the photos. I don't blame you. Honestly.)

Mr. Wyatt has gone to a few appointments the last week or so. During that time, we were mostly focusing on weight gain. As of today, Wyatt weighs in at 4 pounds 15 ounces. He is so close to breaking the 5 pound mark! 

This little guy is starting to spend more of his time alert, eyes open, scanning the room. Of course, his teacher mother tries to make him learn all the time, practicing scanning the room, looking toward different directions, and stretching and kicking those legs. Poor kid. Can't catch a break with a teacher mommy 

This week we have an appointment with the audiologist. Wyatt failed his newborn hearing test once with his right ear and once with his left ear, passing the opposite ear each time. The NICU team shared it's not terribly uncommon, and chances increase in c-section babies because they are more likely to have fluid in their ears. We will cross our fingers that's the case and we can get it cleared up soon. 

Mommy and daddy are adjusting to life with a baby in the house. The dogs sre, too. So far, Duke just loves giving drive by kisses and Gracie only wants to cuddle. Some things never change, I suppose. 

Wyatt celebrated his 1 month birthday on Saturday. So hard to believe that this little guy has been in our lives for a month. It seems like he's been here forever, but it also seems like just yesterday. I suppose when you've dreamed of holding your sweet baby for so many years, it's easy to feel like he's been part of your life forever. 

We thank each of you for your continued support and prayers for our little guy. He's still a little dude and needs to grow, grow, grow. We also need to get through cold and flu season. What is just a minor inconvenience for relatively healthy adults, can be life threatening for a tiny baby. We are crossing our fingers and toes that insurance will approve him for the RSV vaccine, which will provide some support against the scary illness. RSV in a preemie and a baby with a heart condition can be life threatening. So please pray that we can keep those germs to a minimum this season. 

With love,

Lori, Brian, & Wyatt

...1/2/16...

Happy New Year! Wyatt spent New Year's Eve partying it up & staying up late!

The bib is bigger than he is!

We have adjusted well to our little guy being home. He is a good sleeper (crossing my fingers he stays that way!) and is a pretty relaxed little dude. My mom is here still, so she is helping us to get adjusted while Brian is working midnights. 

Wyatt's favorite thing to do, taking a nap. 

We had our first pediatrician appointment today. He did not gain any weight which wasn't a surprise, as the home health nurse was here yesterday and she weighed him and he was 4 pounds 9.5 ounces. The doctor and nurse explained that there is some variability among scales but to be sure, we will continue with a weight check later this week. I am hopeful that once he settles in, we find that he grows like a weed. 

The dogs are trying to adjust to having this little human in their home. I am very surprised at how calm they have been, given they are both still puppies themselves. Gracie appears to be pretty protective (in a safe way!) of Wyatt, while Duke likes to enjoy him from a distance, with the occasional drive by sniff/kiss. 

For now, we will continue to do everything we can to encourage our little dude to grow, grow, GROW! Nana and I are convinced that means extra snuggles and LOTS of kisses. 

Love,

Lori, Brian & Wyatt

...We're HOME!...

Thank you to all of the wonderful people who helped our family through this journey!

This was on Wyatt's board today, which brought a HUGE smile to our faces. We knew it was our day to say goodbye to the NICU and bring our little guy home. After 22 days in the hospital, 2 different NICU's, a variety of doctors/nurses/techs, and lots of tears, our guy was ours to bring home. 

"What?! Did they just say I'm breaking free today?"

We joined the team for rounds and even broke the rules while doing it! The AAMC NICU has a (stupid) rule that only 2 people can be in the room at a time. Well, that's fine and dandy but not when it's the last rounds and we needed to have all of us listening to the rounds/discharge instructions. For this rule follower, it felt great to break the rules for once! 

Waiting patiently to be released

The morning seemed to drag on while we waited for everyone to finish up their part of the discharge packet and we reviewed all of the information we needed before taking Wyatt home. If you've never experienced hospital time, consider yourself lucky. It's essentially the same as watching paint dry. Soon = no less than an hour. Around 1:30 in the afternoon we put Wyatt in the car seat and said our goodbyes. 

Getting ready to go!

I would like to say I was really sad to say goodbye, but that would be a lie. While I'm eternally grateful for those who cared for our son, I'm so excited to embark on the journey of raising our baby boy in our home, where he belongs. 

Our family, ready to go!

Thank you to each one of you who has shared our journey. We appreciate each one of you for thinking of our family and sharing our laughter and tears along the way. Our time in the NICU is over, but our journey has just begun. 

I plan to continue writing in this space, as my hope for starting this was for it to be a place to share our lives with our loved ones, especially those who are not near. Please stick around and watch Wyatt grow. Here's to a new year filled with love, laughter, & happily ever after. May 2016 be just as special as 2015. 

With joyful hearts,

Lori, Brian & Wyatt

...12.30.15...

Today was a pretty fantastic day for our little guy. The team uttered the words we have been waiting to hear! I don't want to jinx it, but there is a really great chance our little guy will come home in 2015 and ring in the new year with us! 

Catching flies while sleeping on Nana.

Last night Wyatt passed his car seat test, which tells us that things are going in the right direction. In order to pass, he had to go 90 minutes without having a brady lasting longer than 30 seconds. This is a little different than the alarms on his heart monitor, which sounds much sooner than that. He did require some additional head supports while in the car seat, but that is something we can replicate and is not uncommon for premature or late pre-term babies. Our little man just needs some extra support and he will get it. 

Daddy feeding Wyatt

Brian was able to feed Wyatt today and both of my boys did an awesome job. I had to leave for a doctor's appointment, so Brian was in charge of the 11 am feed while Nana watched. The speech therapist joined for the feed to give pointers for a successful feed. Wyatt nursed for his 2 pm and 5 pm feeds and did awesome for those too!

Please stop being so cute!

We continue to pray that our little guy grows and grows, while learning all of the skills he needs. Please pray that the next 12 hours or so go smoothly and that Wyatt is able to join us at home, if he is ready. Mommy & Daddy probably need some prayers as well-- bringing home a baby is tough work and bringing home a baby with some medical issues is a little scary. We know he will do amazing things at home, but we also know there may be some anxiety as well. 

Wyatt says, "I'm ready to do this! I can't wait to meet my puppies and see my new digs!"

Thanks for your continued support,

Lori, Brian & Wyatt

...12.29.15...

Today was a fairly good day for our little guy! We did our usual routine this morning, mom and I went to the hospital to join rounds and Brian stayed back with the dogs, joining for the afternoon shift and switching with mom. During rounds this morning, his team was very pleased with his weight gain (40 grams), his decrease in frequency of cardiac events, and his nursing. It was a hearty, "Good job, Wyatt!" for rounds. It seems like the prevacid is doing its job and helping with the reflux. The nurse practitioner said if he keeps this up, we could have him home soon! He needs to maintain his weight and continue the downward trend in dips and brady's. 

This is what milk drunk looks like.

He nursed today for 3 feeds and did a great job! He seems to be getting the hang of it and is pacing himself, which is a huge step for him. We will also continue to work on bottle feeds, as the bottle feeds contain the fortifier mixed in the breast milk which will also help to pack on some pounds. He also requires some iron and vitamin d, which needs to be given mixed in with breast milk to encourage him to take it. It smells horrible, so I can only imagine it tastes horrible. 

A thumb sucker?!

We are in big trouble with this kid. You can take away a pacifier but you can't take away a thumb! My mom reminded me that a thumb can't get lost, but I still think we are in for a wild ride with this kid. The nurses commented that they had never seen a baby this young find their thumb. I guess we have a strong minded little fella (was their any doubt-- he favors his father after all) and he will find a way to make himself happy. This seems to happen most when we are changing his diaper. It's likely because this routine is unswaddling him, temp check, diaper change, quick measurements of his belly, then we feed. It can sometimes take a minute or two to do all of those things and he wants to eat. I'm glad he can self-soothe, though.

All in all, a good day for Wy guy. We continue to cross our fingers that things go well and we continue to see all good things so we can take our guy home.

Thanks for your continued thoughts and prayers!

Love,

Lori, Brian & Wyatt