Surgery, improvement, confusion, crazy and chiropractics

Kotah had her tongue tie and lip tie fixed a few weeks ago. I went in expecting a little tiny blueish laser pointer. I was sorely mistaken. Imagine a tiny barbie sized welding iron that just burns/melts away the flesh. It was quick, no blood, no risk of infection, but definitely NOT painless. Poor Kotah! I had nightmares about it! She recovered ok and her eating improved somewhat, but more so cuz she was in pain and didn't want to eat as much as she usually did. After she felt better it was back to old patterns. The doc wanted her off her monitor as we hadn't had to stimulate her for over three weeks. A week later we had another blue cold baby episode. Back on the monitor. Last week the doctor, in as nice a way as possible, told me I was crazy. Even though this has happened at the hospital. Even though others have seen it. Because she is 20 lbs and no signs of obvious mental delay it must not be a problem. If it was really happening, she would be a failure to thrive. I was pissed to say the least. Yes, I may look like a mom who is loosing it, but its because of what we're living through. I am not making it up.
I spent hours looking things up in ty's medical dictionary. Then I went over to a friends house and got some ideas from online. I called a chiropractor. I wasn't even sure if they would take our insurance but I didn't care. Finances can be so important and they are. We stayed up late last night trying to figure things out. But when it comes to your child, no expense is too great.
The chiropractor was will to work with insurance. We got in that day. She knew what I was talking about! She deals specifically with infants and children. It is called near-miss SIDS and it happens when there is pressure on the brain stem from vertebra being off line. She warned that as she worked on Kotah, there may be more episodes at first. Yesterday was no exception. It was a bad one. I was scared. But the thing that is just a little worse than reviving my child is knowing that if I had called 911, we would be in the hospital with nothing being fixed. So the chiro called a friend who works with these specific cases. One where, after finding nothing wrong with the baby, the hospital sent the parents home with the instructions to shake the baby when it stopped breathing. That was the only thing they could find. I almost cried. Those parents need a hug! They sound just like us! So we are headed to Draper for the next few days to have her taken care of.
I hope this works. Yesterday the sleep specialist called and said it was her understanding that this was an ent issue. The ent has washed his hands of it, the GI clinic also. I need to find new doctors! Something is wrong with my child, but the only one who seems to believe me is a chiropractor (for which I am entirely grateful for) but yeah, try to explain that at the hospital.... I will be called crazy a thousand times if it means finding what will help Kotah. This is becoming so hard. I am quicker to loose my positive attitude each time. But the blessings and miracles still abound.

Third time around

We are in the hospital again. This time was just for a 24 hour PH probe study. The two nights prior Kotah didn't have any apnea spells. But she was right back on track last night. After about the 8th time the monitor went off, as the nurse and I sat there watching her waiting for her to self correct or change colors, the nurse turned to me and asked "do you seriously do this every night?" Honestly though, I think I got more sleep here than at home. Something about having a whole staff full of eyes and ears that are also watching out for her.
We are still waiting for medicaid to come through to get her tongue tie and lip tie fixed. (and hopefully help out with all the other expenses as well) So far our insurance has saved us over 25 grand, but its the amount they didn't cover that is a little stressful.
This time around we were a bit more prepared and I think we have avoided any emotional breakdowns with Katie. And we were well versed on all the support the hospital has to offer, so we've kept well feed and entertained.
We get to leave here in 2 hours and head home to continue life as we know it. Our normal for now. The results of the test will be in in 5 days and we will go from there. I have to count my blessings. I have met two families today that have been here over a month. One waiting for a heart for their baby and one waiting for a son to be recovered from a car accident. But with both these are their only children. I can't imagine what I'd do with Katie if we had to stay that long. Even though they still haven't figured out what is wrong, I am grateful Kotah is healthy enough to stay home most of the time. We'll just keep enjoying and be thankful for each moment.

Short quick info

Kotah is on an apnea monitor. It is proving to be very useful and helpful (which i guess is also scary) We saw the speech therapist and the ent doctor. We've been told she is a special needs baby (in a physical aspect i think as most babies hardly go through and need everything she does) They are trying to get us into a GI doctor next week to schedule a scope which would require anesthesia and a day long hospital stay, as long as nothing goes wrong in the surgery room. It's all still kinda crazy!

A prompting, a dead baby, second hospital stay and nothing wrong

So we were waiting and waiting for the upcoming visit with a cardiologist. Then we received a call Wednesday afternoon saying that they wanted to do the cardiogram Tuesday morning before the appointment. It felt amazing! I was pretty sure the weight of the world had been lifted. At least a small potion.
The past 4-5 days had been a little rough. Dakotah had been turning colors and holding her breath and being really lethargic and just all together being not her normal self. I was guessing it was teeth.
Thursday night, after a fun day, I had gotten Kotah to bed and finished getting everything ready for a fun day the next day. Kotah sleeps in her car seat, in a stroller, right by my head. I had checked on her one last time, after checking on Katie and was settling into bed. Just before I drifted off to sleep, I received a very strong impression to check on Kotah. I turned over and placed my fingers on her soft spot to check for a pulse. This is not a surefire way to check, but it is the first thing I do and a reassuring touch to make sure all is ok. I could not find a pulse. Kotah is the type of baby that wakes up to touches and noise quite easily. I called her name. No response. I turned on the light and pulled her out onto our bed. She was white and cold and clammy. I listened to her chest for a pulse or breath. Nothing.
By this time I was freaking out. I yelled for Ty and started shaking, patting and rubbing her. She started breathing and had a pulse after a few seconds but it took another hour just to get her to become conscious and respond. I was a wreck.
After she was awake, I called her primary care physician after hours line. The nurse that I talked to said to watch her and call the doctor in the morning. I sure as heck wasn't gonna fall back to sleep. Katie woke up and the three of us spent a few hours watching a documentary on Burmese Pythons and their effect on Florida wide life. I was thoroughly grossed out by it. Katie loved it. "Look! It is swallowing a crocodile! Look! The guys cut it open to look at the crocodile! COOOL!" I was looking for a bowl to barf into.
The doctor sent us to Primary's to do an emergency echo cardiogram. It came back normal. But we were admitted for another stay to observe.
Though she did have dips in her sats and a hiccup in her cardio rhythm throughout the night, she was fine. They placed an IV "just in case" and that took forever. The way the techs put it, if they had to place an IV in an emergency, they wouldn't get it in fast enough. It took them about and hour and 3 tries.
This morning they did an EEG which was looking for seizure activity in the brain. That was normal.
They gave us a different specialist this morning. This doctor has worked on studies with children that do the same thing as Kotah. I was so happy and relieved to learn that she is not a rare case! Something about knowing that you're not alone. According to the doc, Dokotahs issues with laryngomalacia, aspiration, reflux and a deformed trachea are the culprits. If all issues present in intensity at the same time, it causes breath holding and color changing. Supposedly something to grow out of.
As for now, we are supposed to do a bunch of follow ups next week and check in with a doctor at least once a week from here on out. While I am glad that they have done everything possible to check for any life-threatening issues, sometimes I feel so helpless. I don't know if I could handle another night like Thursday. Sometimes I am so scarred that we are just going off of borrowed time with Dakotah. I guess we just try to enjoy each moment and not live in fear. And be very very grateful for the Spirits promptings.

Another mystified doctor

We had her 4 month check up today plus a review of how she is doing since the hospital. He has decided that she needs to get an ECG due to her blueness. And even though she can bring a spoon to her mouth, she cannot eat food, because if she gets anything but breast milk aspirated into her lungs, she could get pneumonia and die. So says the doctor to deter me from trying to feed her. At the rate we are going, she might have to hold out til 8 months, or get a tube down her nose, or a tube into her stomach. He was not convinced about her blueness. They will have to put her under to do the ECG because she is supposed to hold still. I so hope that it will be a few hour thing and not a few days thing. She is rolling and trying to crawl. She has gotten her legs down, her arms just get in her way. I am so grateful for my mom and my sister!

Info more put together

So, a little more info:

She does have laryngomalacia and a slightly deformed trachea. Nothing that they decided needs surgery. She had healed from tuesday to friday. It was a miracle. But she went blue on the operating table, which is why they decided to keep us.
They ran a bunch of blood tests and urine tests the first night. A blood test did come back with some abnormalities which was why they kept us a second night. They ran an ekg, chest xray, and genetic blood tests over the next few days.
As they were preparing to discharge on monday, they decided to keep her another night. That night she started throwing up violently, refusing to eat and her soft spot swelled. They put in an iv and started her on antibiotics. And ran a ct scan and a renal utral sound to check her kidneys. Everything came back normal for all the major stuff. She did not have a fever, but everything else points toward meningitis. And since she has been on the antibiotics, she is starting to do better.
The doctor called me yesterday because he was not convinced of the results of her iron and had ordered them tested again. It turns out, she has a low iron level which causes her to pass out, and to only eat for a few minutes. The turning blue is something stenosis.
We are still waiting for some genetic tests to come back, but we are happy to be home. She is a little peaked from the antibiotics, but her soft spot is no longer swollen.
It has been such s miracle for my mom to be here. I don't know what we would've done without her. Tomorrow morning she leaves, but my sister comes so I am looking forward to that! Thank you for all your prayers! I know that they have helped! The nurses and doctors at Primarys are amazing! The way they have so many programs set up to help families is incredible!

Going Home!

After a very very very hard night, and many tests today, we are headed home. Kotah refused to eat and had an iv placed. She hurlled pretty much everything possible. And her soft spot was swollen/full. They did more blood work, had a renal ultra sound done and a CT scan. Everything has come back normal. So whatever is going on is decidedly non life threatening. There are still blood labs out that haven't been completed yet, but as she is now fully off the oxygen and the iv, we are free to go. She is a completely different baby from 24 hours ago. She loves playing with her hospital buddy doll that is half the size of her. She has a smile for everyone.