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.

Ha ha! Just kidding.

So my last blog was a lie. We did not get discharged. We were prepping for it and getting ready when the doctor came in and said that there was a change of plans as a test had come back positive for infection. So they put an iv in and gave her an antibiotic that way. She has since stopped eating all together. Her normal feed is at least every hour for 2-3 minutes. It is 12:15 She hasn't eaten for 9 hours now. And she has projectile vomited twice. She is extremely grumpy and exhausted. More so than usual. They tried to put fluids thru her iv, but the little stinker had grabbed it with her hands and dislodged it. Even though they had taped it to withstand the end of the word. So since she wont eat and has thrown up again, they are placing another iv and taking more blood work.

This is the worst she has been the whole time we have been here. Even minus all the stomach issues, she has been having oxygen level issues today. She has been able to go off of the oxygen, for the past two days which was amazing, and had no problems, until this past day. I am so glad they decided to keep her. I can't imagine going through this at home. We would just be coming back here. Blessing in disguise.

Ty and Katie got to come hang out with us for a bit today. Ty was able to get Kotah to sleep while Katie and I played hide, count and scare. It is Katie's version of hide and seek. I've missed us all being together as a family. Katie entertained the staff by running up and down an empty hall.

We have been going through quite a few nurses as they are over staffed (or under babied) and keep having to send people home. I am sure I will have no voice by tomorrow because I talk most the day long.

With this new development in her health, we could be looking at even more days. She can't go home needing an iv. We are surpassing the time the brain surgery kid spent here. I am glad that she is sick here rather than at home. But I can only imagine how she feels.

Hopeful!

After much poking, they are actually considering sending us home today! Hurray! She has had blood work done for I am pretty sure everything in the book. The first two times they took blood she cried. This last time, she was calm. Sad thing to get used to something like that. We got a slightly new team of doctors today and even got one that is here from Denmark/Germany. We are still waiting for a few more labs to com back, but I am hoping that we get to leave here soon if everything is ok. Of course, because they mentioned discharge, she went an had an oxygen level episode. Hopefully it wasn't bad as she hasn't had any problems like that for the past two days. But I am so ok staying if they are concerned. Home just sounds really nice! The doctors have decided that reflux and laryngomalacia, torticollis, and some type of non-life threatening stenosis do play a part in whats going on, but it's not the whole picture. Right now they are checking iron levels to see if that is also a contributing factor. This is turning into like a very big picture. Her medical chart is like a masterful work of art by Van Gough. The words that the doctors here are using : Curious, amazing, frustrating, mysterious, hard, ect. One mentioned using her as a case study for an upcoming conference. She has been living the very elongated version of an episode of House. :)  I really do want to go home, but I want to do it in the most safe way possible. If Kotah needs to stay, then stay we will, And we will do so gratefully because it is awesome that there are places and people that can help in these situations.

1st full day in review.

We have been talking to a ton of people today. I feel like I am going to loose my voice. We were assigned a team of specialists this morning and I was concerned that we wouldn't be able to talk to them til tomorrow. They were all in within the hour and had a plan in place an hour after that. Kotah has been under an apnea log watch, they sent in a lactation specialist, they did an ekg, they drew blood and she got a chest xray. Her blood levels came back with abnormalities, but they couldn't specify what exactly as it was not a huge thing. Her chest xray came back normal so they will be drawing more blood in the morning. Poor thing!!!!
She has been pretty vocal today in expressing her displeasure in being here. They want us to see a different specialist on tuesday. I would really like to not be here on tuesday. They are basically at this point ruling out all life threatening problems.
I never thought this would be so exhausting. I feel like I am getting even less sleep here then at home. I miss Katie so much. She was crying when she had to leave today. It broke my heart. Tonight we have the room to ourselves (knock on wood, as long as no one comes in in the middle of the night) so I hope that will help. I got to talk with the mom for the little boy and they have been through a lot. She was super kind, showing me the ropes of how to work things and where to find things and what to say to get what I needed.
I wish I could answer peoples phone calls and texts, but alas, my phone has little to no reception. Thank you all for your concern, prayers and love!

Not the update I wanted to write

On Tuesday, we came and had a swallow study done. At that time, they determined that it was more serious than we previously thought. A surgery was scheduled for today. They were planning on looking down her throat and lungs to check for additional issues and to trim some of the floppy skin on the epiglottis ( the skin that covers the trachea when you swallow). There was an amazing tech in the imaging department that I felt was truly Dakotah's guardian angel. She could see that I was running off of no brain and she stuck with us the whole time and advocated for Kotah to each of the doctors. She in turn explained to me everything the doctor said.
We arrived here at 12:40 and Kotah hadn't eaten since 10:15. Then they had three emergency surgeries. They didn't take her back until 5. The little trouper slept the whole time. After just a few minutes, the doctor came out to show us some pictures. The floppiness was gone. Miracle! Her trachea is slightly deformed and smaller than usual but they expect her to grow out of it. And it isn't considered the source of the problem. While in the operating room, she went "dusk" which is where the skin around her lips go blue. This is a pretty common occurrence for her, as is passing out which has increased in frequency.The doctor informed us that this is a neurological issue. All the simple problems have been ruled out.
I was not expecting that. So here we are, waiting out the night. We get to meet with a team of pediatric specialists tomorrow morning. And go from there. It doesn't help this mommy that they placed us in a room with a child who just had brain surgery. I lost it for a minute or two. She is proving to be a delight and challenge. When coming out of the anesthetic, she was blubbering and gabbing about everything. If only I knew what she was actually saying, I am sure it would've been a hoot! And she decided to give me a heart attack. Her stats were dropping so I picked her up to comfort her and blood went everywhere! she had kicked out her iv. Scare of the night! So far.
Right now I am not sure how to feel. I am extremely grateful for the miracle of the healed epiglottis. Prayers are amazing!!! But I am so shocked and numb to even try to comprehend that she has brain issues. To bad this is a children's hospital, no sedatives for the mommy, although they encourage a full nights sleep, stating that they will take care of her. We have had so many miracles, I guess that is so that I can believe that more will come. Keep praying. Call in reinforcements.

More details than not

When we went into the last appointment with the doctor, it was very nice. Dakotah had turned colors a few days prior and I had talked with a nurse who said that it could be SIDS and they might not be able to do anything, but that the second specialist would try his best. When we got in, she was hungry but I knew that if they were gonna do tests, she needed to not have eaten. While I was asking the nurse about that, the doctor poked his head out and said not to. He had already gone through her charts that had been sent over, ordered a scope and cleared out the rest of his day. He sat through my 9 pages of notes and then said "I am pretty sure I know what the problem is after talking with you. Lets do the scope and check." He walked us through everything and he was right. It is a flap of skin in her throat that is too big and closes off so she can't breath or swallow at times. Mostly kids grow out of it and it isn't that big of a problem. But in Dakotah's case, it is inhibiting her normal functions, but she doesn't have a failure to thrive which is really good. They are giving it til this coming Tuesday for her to outgrow it. At that point, we go in for a swallow study to see how bad of a problem it is causing her swallowing and then we see the doctor again right after (who again cleared out the rest of his schedule for the day for her) to decide if surgery is necessary.
It was so nice to have him take the time and make her a priority. He knew what was wrong and what to do. He was very calm and said we had done everything right to help her. He wasn't worried about her dying :) which was very nice to hear. He said it can happen very rarely but that we had taken all precautions and he was sure she was gonna be fine.
Needless to say, the stress level is down greatly in our house. She still has problems. They want us to try her without oxygen for a little bit everyday to see how she does. Sometimes she is fine, but a lot of time she struggles with out it. And there are times she struggles with it. It cant move the skin, just give her enough back up so that when she can't breath, she is ok on her levels. She did pass out the other day and scared the crap out of me. But she is growing great. She began rolling over the other day and loves to mimic faces. She tries so hard to giggle and laugh. She is a very easy going baby as long as she is being held by mommy. occasionally she will let others hold her, but not for long. Each birth should add an extra set of arms for the mom! She has a great personality and smile. Knowing what is wrong has made things easier to deal with! The prayers on her behalf, from family and friends and strangers are so appreciated. The abundance of little miracles and big have been amazing!

Real quick

Due to screaming child at home, this will be super fast. Dakotah has laryngomalacia. It is a grow out of thing. Just stay on oxygen and a monitor for a few months. In two weeks we have a swallow study to determine if she will need surgery. Very good doc appointment today. Amazing. Stress level is down a lot. Still keep doing what we're doing. But not so afraid of the unknown. Hurray!

Scattered update

It's the small things that make a big difference. Since starting the oxygen, she slept 6 hours straight in one night. 6!!!!! She did so well the past few nights, I decided to try her on her back last night. DUH! What was I thinking?! So this morning I hooked her up to her oxygen, and put her in her stroller. She was out! At least, I think she is.... I left her in the very capable hand of her daddy and big sister and a monitor. Yup.
After the oxygen test, they took the monitor away. I was a complete wreck. Here was this nice little device that could warn me before it got bad and now I had to rely on my own (seriously diminished) ability to recognize when something is wrong. At church, my friend who has had a preemie, told me that she had a monitor that I could borrow. What a HUGE blessing and miracle. The stress is greatly reduced!
She is doing good though. No more attacks when she is asleep, but only when she is awake. She just drops for whatever reason.
On another note, if your child is suffering from an extended period of pink eye, please do not bring them or their unmedicated/ contagious siblings to nursery. Katie got it. While I do have meds and hers is almost gone, now Ty is getting it. And trying to tell a 3 year old "don't touch the baby" or "dont get within 10 feet of the baby or anything the baby touches" is kind of unrealistic. It also prevents people from coming to help hold the baby, and thus long lives the skunk. Thank goodness Ty finished a term this week and has school off for the rest of the week. He got and A and a B! I am super proud of him!!!!