Happy Trach-iversary!

A year ago today I stood in a NICU room in total shock. My baby was laying limp and a swollen from anesthesia. He was hooked to a ventilator, his life support. He had a hole in his throat with stitches in his chest. It was the most awful moment of my life. Worse than the day he was born and whisked away to the NICU without so much as a first cuddle or first kiss. All I could do was stand in the back of the room and cry. It was hard. I don't even have enough words to describe how I felt. I just know it was bad. It was a moment of knowing our lives were forever changed.

The only picture I have of Noah that day after surgery....

We had to learn a whole new normal. We had to learn how to keep our child alive. Here was this tiny, 20 day old baby going through such painful and awful things. And I was the one crying. Because I was helpless. Because I couldn't fix it. Because he's my baby and I couldn't even hold him. It was a hard day. And the next 6 weeks we spent in the NICU were hard. We were learning everything about his trach. Taking trach CPR class, doing trach care, changing his trach. It was so much to learn and take in but we just had to get through it to bring Noah home.

Finally home. 

Noah's first picture at home in his own bed.

It's funny looking back now because I remember when the idea of Noah needing a trach was first mentioned. I didn't really know much about them and had certainly never seen one on a real person in real life. I went onto the pregnancy forum that I used when I was pregnant with Noah and wrote a post asking if anyone had a trached baby or knew of anyone that did. I got a response back from a lady that said her cousins daughter had a trach and she's now 3 years old and running around even with her trach. My immediate response was Wait.... She took her baby HOME with a trach??!! I commented back something to the effect of "Oh I don't know if I could do that. I wouldn't want to take my baby home with a trach." As if I really has a choice. But still, it just goes to show that I had no idea what we were getting into.

Our life is so much different now and Noah's trach has moved wayyy down on my giant list of things to worry about. Noah's trach has saved his life. Obviously, he can breathe on his own now. But with Noah's disease, respiratory distress or illness can be a super huge, even life-threatening thing. So with the trach already in place, when things come up they are easier to troubleshoot and easier to treat. I honestly wouldn't be surprised if he needs it for several more years, maybe even his whole life. And as sad as that makes me as his Mother, to know that he's always going to need some sort of medical intervention just to breathe, I'm really grateful to his trach for every sweet breath that he does take.

Happy Trach-iversary, baby boy! Hopefully not many more but we will celebrate this day as your opportunity for life!

Escape

Escape. Yesterday I got the chance to escape. Or I should say we did. The stars aligned perfectly and we had the whole day to ourselves. Oliver was with his Grandma and Noah was in the care of his favorite nurse, Miss Brittney. Nathan had the day off from work since his birthday is on Sunday. We had a whole day of nothing to do and no where we had to be. We decided pretty last minute [which is sooo not my style these days] to take a day trip to Houston and go to the Kemah Boardwalk. 7 total hours in the car with my husband was probably just what we needed. We talked some and sang along to the radio. We had the chance to simply enjoy each others company without attending to children. It was nice.

I felt young again.

I know, I know. I'm only 21 so I'm not old but I feel like it most days. I have so much to do and worry about and plan. It was so good to have a whole day where I didn't have to do anything of that. Of course I'm a Mommy so I always worry and I always miss my babies. But I knew they were both well taken care of so it was a nice break to just be myself and enjoy some time away with Nathan.

We walked on the boardwalk, ate some lunch/dinner [linner? dunch?] at Landry's, and watched little crabs, jellyfish, and catfish swim around in the ocean. The boardwalk will be a really cool place to take the kids when they get a little older. Lots of rides and fun carnival-type games to play. We had a really nice day and got back home just in time for a nice thunderstorm!

Escape. Just what I needed to remind myself of everything that I miss waiting back at home for me.

Real Food

Giving Noah "real food" is such an important thing for me. There are so many areas that he is weak in and eating happens to be one of his strengths [if you couldn't tell by all of his rolls and chunky cheeks]. He has no GI issues besides a little bit of reflux which was fixed when he got the Nissen Fundoplication surgery when he had his g-tube put in. And I am so thankful for that. This is his most normal thing. I'm not sure if that makes sense. But eating is where I feel like we have and will make the most progress. He is already getting real people food into his system and since I am still so, so hopeful that one day he will be able to eat orally, we already know that he actually tolerates real food.

Since he has started getting real food, I have noticed how much healthier he looks. His hair has grown tremendously. His skin is not dry and rough. He just looks so much better. And I attribute it to the food I've given him.

At first it was a challenge getting his GI team on board. He was only 5 months old when I suggested it and they were playing by the hard and fast no solids till 6 months rule. I didn't really listen and continued to give him small amounts of blenderized foods. Now I wouldn't recommend this for everyone, to go against medical advice. But there was no "medical" reason why he shouldn't have food and his doctor actually tried to put him on reflux medication..... Yeah, let's medicate this kid instead of giving him something healthy and natural. How nuts is that?! But, that's the world we live in. Medicate, medicate, medicate. No thanks!

Stepping off my soapbox now....

Anyway, we were noticing such good results with the small amount of food I was giving him so I kept pushing the doctors. They were worried about giving him "too many calories" by doing my blended foods. Luckily, I had done a little research and found that in 1 serving (2 oz) of my blended squash [which is what I was mostly giving him at that point] I was only giving him an extra 6 calories. 6 calories in a whole meal! I then went on to say that if anything needed to be cut back, it was his formula, which was giving him over 100 calories for one meal. The dietitian definitely backed off and gave a hesitant "OK" for me to supplement his now-reduced formula feeds with some blended food. When Noah started getting closer to a year old he started spitting up a lot more than before. I thought maybe if we switched his milk-based infant formula to something with a non-dairy base that it would help.

Mom was right, again! Go figure...

Noah started on Compleat formula which is made with real meat, fruit, and veggies. He was only able to get 5 feedings a day, instead of 6, of this new formula because it is much more dense in calories. I proposed the idea of giving him 1 big bolus feeding of blended food in the morning and the resuming formula feeds for the rest of the day. Dietitian was on board! Noah tolerated this change in his diet wonderfully. At his last clinic visit I was given the go ahead to feed Noah AS I PLEASE... let me repeat AS I PLEASE! The calories in the blended food is about the same as the formula so basically I can swap blended for formula any time I want. 

Right now Noah is up to 2 blended feeds a day and formula for the other 4 feedings. My goal is to use blended for all of his daytime feeds and only use formula at night. Eventually, I would like for Noah to get all feeds and have all of his caloric needs met during the day and stop feeding him at night. His dietitian seemed to think that was a reasonable goal so I will be trying that within the next few months hopefully.

Feeding Noah is a personal thing for me as well. It is how we bonded. At first, I was pumping my breast milk for him and I was in control. I made the milk. I fed my baby. I pumped for close to 6 months and that's when we started doing blended foods. I made the food. I fed my baby. I am in control. I know I might sound crazy but in a world where I feel so helpless or in the way, feeding Noah has always been something I've done right. I gave him the best start, my milk. And I will continue to give him the best with the blended food. It is a lot more work but the results are so, so worth it.

Noah's shiny, curly hair and bright, chunky face say more to me than any doctor ever can. I know I am giving him the best thing he can have.

Noah loves his blended food!

Good News

Today we went back to Trach Clinic to see some of Noah's specialists. We also had a meeting the the Palliative Care Team. Now before you guys get all crazy [Why are they talking about Palliative Care? Noah's not DYING!!] I need you to understand that Palliative Care and Palliative Medicine is so much more than end-of-life care. They work with managing pain for the patient as well as coordinating between specialists to make sure that everyone caring for Noah is on the same page and knows what is going on. At some point our needs might change and we may use the team in different ways and that is okay. They are all about family centered care and they want to do whatever they can to help us. They care for Noah as the patient and us as his family and caregivers. The only "qualification" for getting Palliative Care is having a lifelong of life threatening diagnosis. There are a lot of connotations associated with Palliative Care and it is often confused with hospice care... which it is clearly not since Noah is not in a hospice situation. I just want everyone to understand what Palliative Care is and how it is going to help our family. I don't want anyone to think that I am "giving up" or "thinking the worst" about Noah's situation. I'm not. I'm just getting help when we need it and I would much rather meet these people now instead of in a time of sickness or crisis concerning Noah. I could probably write a whole post about Palliative Care and I probably will at some point. But this is also about Noah's clinic visit and some awesome news we got today.

First we saw the dietitian and I gave her the food log that I have made to keep track of Noah's caloric intake. She loved it! We also discussed my short and long term goals for Noah in terms of feeding. Short term, meaning in the next 6 months, I would like for Noah to be on his blenderized diet for daytime feeds and formula only at night. The dietitian said that is completely reasonable and I am free to do so at my own pace. It will be really easy to make that transition because the blenderized food I give him is in the same range of calories as his formula. So basically I can just substitute the formula for BD food. Long term, by the time he's 2, I would like to try to wean him off of overnight feedings and give him all of his feedings and calories during the day. I feel like that would be the most developmentally appropriate thing and I am hoping it will make him more alert and active during the day. She also supported me in that goal and said that is definitely something that we can try. I do understand that there are some children/ people that are tube fed that just always seem to need to be fed overnight. That may be the case for my hungry, hungry hippo Mr. Noah, but I am willing to try to wean him.

Then we saw the speech pathologist and we talked about a repeat swallow study since he hasn't had one in almost a year. She didn't think we would see too much of an improvement especially since we didn't get to complete all of our vital-stim treatments. She talked with Noah's regular speech therapist and they decided together to wait for the swallow study until he has completed 25 sessions of vital-stim. Vital-stim is pretty much just little tiny electrodes that go on Noah's neck and give little "shocks" to stimulate his muscles to swallow. He had about 4 sessions a couple months ago and then we had to stop speech therapy sessions because of a crappy insurance problem. Noah tolerates the vital-stim very well, kind of enjoys it even. So I'm hoping we can get through 25 treatments fairly quickly and then go back for the swallow study. The speech pathologist also drilled a tiny hole in Noah's speaking valve because I was telling her how Noah was having trouble wearing his valve and seemed uncomfortable when it was on. She said that most of the time kids will tolerate it better with just that tiny little air leak until they can get used to the feeling of wearing the valve. I'm hoping it will work for Noah because I love hearing his voice but I don't like that he gets so upset when he wears it.

Next came the ENT and pulmonologist together. Noah had a sleep study at then end of June so we have been eagerly awaiting the results. It came back that it looks like Noah has some type of obstructive sleep apnea. That is pretty strange for a kid with a trach to have something obstructing his airway. They want to set up an appointment to go into the operating room and put a scope down his throat and trach under anesthesia to see if there may be some scar tissue or granulation tissue possibly causing some blockage. They said this is pretty rare [what about Noah isn't rare at this point] but if they do find an obstruction then they can just use a laser to get rid of it right then and there. If they look and don't find anything, then they may have to explore some other reasons. It may be due to his low muscle tone. But here comes the best part.... The original question in all of this was hypoventilation. That means that Noah might not be exchanging oxygen and carbon dioxide correctly. When carbon dioxide levels get too high in the body it can be bad news. The pulmonologist thought he might need ventilator support if the sleep study showed hypoventilation. The results came back that his gasses look perfect! There is no cause for concern of hypoventilation and Noah's number score from his study was a 7. 5-10 is considered "moderate apnea" and Noah's doctor was expecting his number to be more like 20-30. He also said that he has seen kids with neurological issues similar to Noah where their numbers were in the triple digits. He was pleasantly surprised at how good Noah's results were. So the best news of today is NO VENT!!! He does have to use oxygen at night while he sleeps now but I think that will be good to give him a break from working so hard during the day. We have yet to schedule his scope but hopefully it will be in the next couple months before we get into cold & flu season.

After we met with everyone they called for the Palliative Care team to come and escort us up to their office. We met with a nurse practitioner, social worker, and a child life specialist. They were probably the nicest people I have ever met. They basically just asked us to tell our story all the way from my pregnancy to Noah's birth, our NICU journey and then life at home. It was hard and there were tears. I still have trouble talking about Noah's birth which you can read about here. They also specialize in pain management which I am so grateful for. Noah's disease can have some pretty painful side effects like contractures in his muscles and scoliosis. He already has spasms and is on muscles relaxers for that so I am trying to be as proactive as I can before anything gets too painful and out of control for Noah. They were very caring and very compassionate. I can tell they really love their jobs and love to help families. I really look forward to having them be apart of Noah's care team. I really want to encourage parents of children with hard diagnoses to reach out to resources like a Palliative Care team at their home hospital. Like I said before, they do so much more than end-of-life things. But I know that when that time comes they will be there to support us and care for us in the way that we need to be supported and cared for. I feel like they are going to be such a good source of comfort and guidance when things get a little more tough.

Here are a few pictures from today... He looks like such a big boy in his cute outfit!

One

Noah is ONE! A whole year old! I cannot believe it! We had such a great time celebrating his birthday and he got so many wonderful gifts that he really does enjoy. I made an amazon wishlist a few months before the big day. I figured it would be hard for people to know what to get for him since he's not a "typical" one year old. He got mostly everything on the list, plus some! Noah [and Oliver] have loved playing with all of his new stuff and I think they are going to be some great therapy tools for him. Regrettably, I did not take as many pictures of his party as I would've liked. I really need a good camera instead of just my iPhone *hint hint.* But here are the pictures I did take, starting with Thursday 7/11...

Woken up by a serenade from Oliver

Birthday hat

Showing us how old he is

Oliver made a birthday treat... Oatmeal Chocolate Chip Cookies

Making him try a cupcake was an epic fail

Playing with Miss Brittney

Nana came over and brought him a hat

Going on an adventure

We're going swimming

First we put him in his chair

Then he got out and played in the water

Another failed cupcake attempt at his birthday party

Opening present [sorry for the not-so-good quality]

He was a little overwhelmed and needed some cuddles

We had a really great time and I am so happy that so many people were able to come and celebrate this wonderful day with us. We are so blessed to have so many friends and family that love Noah and love us, too. I want to say a big THANK YOU to everyone who helped make this such a special day for my special boy. 

And Now We Are Here

And now we are here.... Here at Noah's last day of being zero years old. Here at the turning point to start another year with Noah. Here at what, to me, feels like the end of a very long journey. I know this is not "the end" really. And so I will explain....

Noah's first few days of life were such a mystery. No one knew why a hefty 36 week baby couldn't breathe on his own. There were many theories and many treatments to no avail. He had a few surgeries, a few more tests. We were told He will adjust when, at 3 (and 4 and 5) months old, he was still not hitting milestones. Any milestones, really. We were doing therapy 4 times a week with very little progress. At first they would spend their whole session just to get him to stop crying. We were going to countless doctors visits. At each one we would unveil one more piece to the puzzle that is Noah. It was stressful. I hated those appointments. I didn't want to be told something else was "wrong" with him. But I knew I had to go. We had to find an answer.

And now we are here. With a diagnosis. With treatment options for his symptoms. With doctors willing to listen and try new things. With therapists that can understand him better and are learning how to help him. I know this road is still very long and there will be many more frustrations and questions along the way. But I am confident that now that we know what Noah's "Monster" is, we can do battle. And we will fight. We will research. We will be proactive. We will win in the end.

And now we are here... Here is a good place to be.

In The Picture

I was reading one of my favorite blogs the other day and there was a link to this blog post. It made me think about myself. And my kids. And the pictures that I take.

I want to be in the picture.

I may not love my extra 20 pounds, my stretch marks, or my hair that hasn't been cut since last August. But I love my kids. And I want them to have pictures of me loving them. I know they will always know that I love them. But someday when I'm gone, I want them to be able to pull out pictures, physical reminders, of how I looked when I held them so tight. The joy on my face holding my sweet, sleeping baby. The silly faces in the mirror after bath time. I want them to look at these pictures and remember every single kiss and every single I love you.

So this is my challenge. I will keep posting pictures of my adorable kids along with a few pictures of me loving on them in all of their perfection. 

I am a Mom in the picture... Are you?

Sleep Study: Preparation and Execution.... Round 2

This is Round 2 even though Round 1 never really happened... We got all of Noah's equipment to the hospital (on time, I might add) and when we got down to the sleep lab, they couldn't figure out how to hook Noah up to the monitors while he was wearing his humidifier. Since I refused to let him sleep all night without humidification, they told us, "Oh, just come back another day." I was so irritated. Did they not see that it took 2 grown adults to get Noah and all of his stuff here? It's not that easy to just "come back." So that was back in March and here it is nearly July and we are finally heading back for the sleep study. Here we go....

[Edit: I didn't get to take as many pictures of "the action" as I wanted to but I'll try to explain it and you'll just have to take my word for it.]

So I start in the morning by preparing sterile water bottles to take with us in the car. We have to take these with us all the time to use when we suction. "O" is for Oral Suction and "T" is for Trach Suction.

Our to-go bag usually stays pretty well stocked at all times (in case of an emergency where we have to leave quickly) but it always gets double checked the day of an appointment to make sure there is nothing extra we are going to need for a particular day.

Today I packed extra wipes and diapers since we are staying overnight and he gets changed very frequently.

I'm not too sure of the set up that they have in the sleep lab so I am going to just pack the can of formula and a few extra bottles in case they don't have a fridge to store pre-made bottles of formula.

We also have to bring his huge humidifier with us. We don't take this anywhere usually but since he does sleep with it on, we have to bring it. Last time, they could not, for the life of them, figure out how to hook up Noah to his monitors with this humidifier on. Since I refused to let him go all night without humidification, they told us we had to come back another time. Hopefully they will get it right this time. We didn't actually end up using this so it was kind of a pain in the butt. They hooked him up using his HME for humidification but at least we had the humidifier just in case.

Then we take it all to the car, down 3 flights of stairs, and off we went to Dell Children's. We arrived safe and sound then we unload everything onto our wonderful double stroller. Noah goes in one seat, his equipment in the other.

We got down to the sleep clinic and met our awesome tech, Melissa. She said she remembered us being here last time and assured me that we would get this sleep study done the right way. I had to fill out a bunch of paperwork and then she finally came back in to get him hooked up. 

He had wires on his legs detecting movements. Some on his eyes, chin, and forehead. He also had 2 belts on, one across his tummy and the other across his chest to monitor how hard he was actually working to breathe. then he had all of the lovely EEG wires attached to his head. Noah was doing so good and tolerating everything that was being done to him until the EEG wires had to be put onto his head. He loves having his hair washed or brushed but he obviously didn't like his hair getting dirty.

He finally got all hooked up and he fell asleep like 5 minutes later. He slept so well all night. He was woken up by a Respiratory Therapist around 5am so she could poke his finger and draw some blood. They wanted to check his CO2 level. After that, Melissa came back in and started unhooking his wires. Then we were set to go home.

We got home and started unpacking everything. I also gave Noah a bath because he had sticky stuff all over his cute little head.

After his bath he was in such a great mood. But Mommy was sleepy so I went and took a good nap. 

Overall, this experience was much better than the first time around. I am so surprised how well Noah did sleeping in an unfamiliar place and having people mess with him. Hopefully his results turn out fine and it will be one less thing we have to worry about for now. We have a Trach Clinic appointment coming up on the 18th so we will know then. We will also be meeting with the Palliative Care Team that day, as well. We don't have any appointments for the next 2 weeks but keep a look out for an update post after his clinic visit.