Holidays & rounding out 2016!

Hello there! Wow, Danielle came home and our December FLEW by! We were so excited to get home and get into a good routine again, not really knowing what that would look like I am SO excited to tell you that it went better than we could have even imagined!
         I truly mean it when I say this in every meaning possible, We.Have.Our.Girl.Back!!!!! It feels so good. Last year when we came home, you probably have heard me say before, we were honestly scared. The Danielle we had was SO different then the Danielle we always knew and it just really felt unsettled. We of course did every single thing in our power the entire year to try and figure her out, try and figure out what was going on and we never had any answers. Everyone would tell us, 'oh, she's older now and understands more and just isn't as tolerable of recovery with what she just went thru.' Or, 'her body just needs time'. Or, 'she is really fine, everything checks out, you have no reason to be concerned, just relax and don't worry as much.' Well for us to not worry is kind of like saying, here's a sucker to a kid and not have them want it. Truly worry happens 100 times over in our minds daily, if not more.
So we would go back to the drawing board, what was Brad and I, and talk over and over again about what could be going on. It was very exhausting. It was very frustrating. It took every single ounce of him being strong for me and me being strong for him, for us to keep it together, honestly. But it didn't break us. We didn't break. I'll be honest, we shed tears. We got angry. We got on our knees and cried out to God to help us, please help our girl. I truly think it was a test. It was a test of us and would we get thru..... It was a test to keep and put in our life the people that needed to be here. We had so many changes in 2015 in regards to our daughters care. Some we loved, ended up moving on. Some new ones that are now amazing blessings to us have come into our life. And some of our biggest cheerleaders, prayer warriors and believers are still here. And now, worry will forever be in the back of our minds but we are telling our self to STOP....looking for something to be wrong. Enjoy the moment. This is as big of a lesson to Brad and I that I can explain. It has everything to do with our personal character, our parenting style, us as humans, as servants of the lord and as I as Amber and him as Brad, a husband and a wife. We are praying and thanking God for protecting our girl just as we always knew that he would. We never lost faith in him. And now we are so thankful to be in a really really good place.

Fast forward to November, 2 days before Thanksgiving and our girl coming HOME!.......we are settled, we are loving every single minute of our girl. We arrived home just two days before Thanksgiving. Danielle was SO excited from the minute we put her in her stroller to come home. She talked nearly the entire way home. When we got home she looked around, you could tell she knew it was home but it took a day or two for us to feel like she was really acclimated. After all, 40 days in the hospital is a really long time.
She started by being sensitive to noises. We need to remind everyone she is just now 5 weeks post op from her most recent, of 2, significant brain surgeries, plus one more brain surgery she had in October and another tummy surgery also, so quiet is her favorite. However, Danielle has REALLY started using her voice. A couple weeks ago I noticed for the first time consistently she would verbalize on command for me. I would ask her a question and she would say, 'yeaaaa'. It was the most precious moment of my entire life. A child that has been non-verbal virtually all of her life, now responding on command. Ah, my friends, God is so SO good. Now she is a chatter box all of the time. She is eating TONS! There are SO many things about her that are amazing and new and I could go on and on and on about, she is absolutely an amazing little girl. She is definitely an angel of God and we could not be happier with where she is right now not only from a health standpoint, but socially also. She is holding her head up more, she is constantly pushing up with her arms and kicking her legs and moving all over the place, rolling everywhere. It is just so so soooooooo good!

When you see your child endure so much pain, it is really hard to maintain those thoughts that maybe it is for a reason. You look for the silver lining in rough days and try to remind yourself that God really knows what he is doing. We always need to trust in Gods plan, and remember it is his plan, not our plan. We firmly believe that every single one of those 40 days in that hospital was needed for them to truly figure out Danielle. As hard as it was. As much as it sucked. As long as the time drug on with no answers. As much as we cried and pleaded for them to just let us take her home. As many times as we fought them to keep looking for something, to keep checking, and as many times we told them we weren't leaving until they fixed her, we NOW know, it was so necessary. It makes me sad that the beginning of 2015 was so heartbreaking and so much seemed uncertain. We have learned that as painful for us as parents, and mostly for Danielle, as many of those days, and uncertain events were, they made our girl stronger today.

Thank you for continued prayers, thoughts, and any positive energy that you can and do, send our way. 2015 brought some absolutely amazing people into our life and we are forever thankful for all of you. We wish you and yours many blessings of happiness and good health in 2016! We are so excited for all of the wonderful things 2016 has in store for our girl. Many pictures and video's coming soon! We can't wait for you to see her!!!
Much love,
The Holub family

40 Days and......HOME!

Who would have ever thunk.....have you ever been in a tragic situation in your life where you've stepped back and thought....how did I get here? That is a question Brad and I have asked too often in our life. And then as quick as it comes on, we go thru it, and the wave is over. We have reached the surface, we can breathe again, we can feel whole and human again. Its a very strange feeling. A feeling that I would NEVER wish upon anyone. But if you've ever gone thru something horrific, you may have felt what I have just described.

After 40 days and nights at the University, our girl is finally home. It is very perplexing that she came home on the 40th day because a few weeks prior I had thought about the significance of 40 days and 40 nights in reference to the bible. If you are a spiritual person you may recall what I am speaking of. But during this time of so much going on with our girl, we felt tested beyond belief. So many days I thought, why, how, what is the reason? I prayed and begged for prayers more than I ever have in my life. This experience changed us. And I say experience because I truly felt that is what it was. I prayed so many time, God just please don't have her feel pain. I wanted to feel her pain, we didn't want her to feel pain. I just felt like there were SO many lessons in this 40 days.
The number 40 shows up often in the Bible. Because 40 appears so often in contexts dealing with judgment or testing, many scholars understand it to be the number of “probation” or “trial.” This doesn’t mean that 40 is entirely symbolic; it still has a literal meaning in Scripture. “Forty days” means “forty days,” but it does seem that God has chosen this number to help emphasize times of trouble and hardship.
The year 2015 started with us truly know something was wrong with Danielle. We did. We knew from the minute she got out of her last surgery in December 2014 that something was wrong. We had a different neurosurgeon. We felt unsettled. She was different kid. Everything was different about her. Her demeanor. Her breathing. Her body tone. Her personality. And if you know Danielle she doesn't cry. She cried more in the last 10 months than she has cried in her entire life, and I am so serious. We visited our local doc, we visited Neurosurgery, we visited the ER, we saw a pulmologist, we saw Oto, we saw every single doctor, we begged for answers, we prayed, we cried, we got frustrated and yelled out, we begged for our girl to get better. She didn't. It cost us relationships. We had issues with therapists, we had issues with nurses, we went round and round and round telling all of these people that SOMETHING IS WRONG. But NOBODY could tell us that something was, because to them every part of her appeared normal. We knew she wasn't.

So this brings us to October of this year. We honestly prayed that if she had to go thru anything, to please not have her come home until she was fixed. Until we could have our girl back. Until it was ALL figured out why she had been so uncomfortable for so long. So that is what happened. In a weird odd way, God answered our prayers. And for 40 days we were tested beyond belief. We advocated and spoke up and told our thoughts and pushed and pushed until we had answers. After her brain surgery to put her shunt back in, when her crib and room in the PICU were packed up, report had been called down to the 3rd floor and we were ready to leave there, I begged the PICU to keep her. I knew in my whole heart when I just happened to leave work and go up that day that SOMETHING WAS STILL WRONG. And we were NOT settling again. We had to advocate for her and make them find the root of what was going on with her, STILL. Finally they did. Finally they said she needed her shunt revised again because it was not draining correctly. Yet when they went in they said they didn't really see anything that was wrong. But they replaced it again just in case. And guess what, that was it, that was the final step that was needed, it brought our girl back. IT BROUGHT HER BACK! After over a year, whatever Dr. Wilson did that day, brought our girl back. I get SO emotional thinking about it!
We had to stay a few extra days to get her feeding again and to  make sure she was ok to come home. It was so frustrating to us because we were OVER it. We knew she was fine. We knew our girl was back and we wanted to be home. Tuesday afternoon last week, our girl came home. I cannot even begin to tell you how amazing it feels. Those 40 days tested us, but you know what....they were needed. We know in our heart it was needed to figure out everything that was going on with her but it brought our girl back. And we are SOOOOOO thankful. God is so good my friends. Why in the world would I ever question him? Why in the world would I ever doubt my faith in him? Because when life gets tough its easy to want to give up. Its easy to be negative. But my friends we were tested, God wanted to see how strong we COULD be for our girl. And if you could see her now, oh my goodness, you would know in an INSTANT how different she is. We pick her up she instantly lays her head down on our shoulders. Her body is SO relaxed all of the time. She had not cried ONE time since we got home last week. She is eating TONS. She is SLEEPING! Oh my gosh, she hasn't slept in a year and she is sleeping! Our hearts are so over joyed. We are beyond happy for her. We are beyond thankful.
I will update some pictures and videos very soon so you can see our beautiful girl. But I wanted to update quick that she is home. To everyone that supported us during this time, thank you from the bottom of my heart. The gift baskets and meals and gift cards and the prayers, the positive thoughts, every single thing and thought and prayer we are SOOOO grateful for.  You my friends helped us get thru this unimaginable time. The hard thing is that we know people have it worse. We know that some are tested even more than we were. And for all of that friends, I ask that you continue to pray for those going thru the hardest of times and for those that will not be home with their family's this holiday season. Until next time, take care and my gratitude for you is more than I can explain. Thank you for loving our sweet sweet girl.~

Emergency Surgery....again, today

As I wrote over the weekend things were complicated. They tried and tried to get her pain under control, and see what if anything was going on. We were literally loaded up to move down to the Peds floor when I said, hold up. You HAVE GOT to figure this out. Thankfully they listened. And they checked everything. Tummy, heart, labs, everything and when it all came back ok then Neurosurgery decided to check her head, in a different way.

Yesterday they decided to do a frontal test on her which is where they inject dye into her shunt and watch it, live via scans, flow down the tubing to make sure its functioning properly. So they did that and right away the radiologist said something was wrong. It was very very slow to move any fluid. Neurosurgery then started looking at MRI scans from right after her surgery last week, until now. There was a big difference in cranial pressure. This meant she needed to get to the O.R immediately. So last night she was set to go within 8 hours. They didn't know what they were facing, but needed to check it out and gave us 4 possible scenarios.

Just before midnight the doctor came in and suggested we delay the surgery until early morning. With the catheter going into heart, if there were complications at that site, he didn't feel.comfortable with the amount of staff here over night to jump in and help him. So we snuggled all night long.

So this morning her Neurosurgeon came in and explained everything in detail. He wanted it figured out too, as much as us. They took her into surgery and right at 3 hours later she was done. He wasn't sure totally what he found, if anything. He said they disconnected the part in her head from the part in her heart and flushed it, in case there was a clot. Nothing. Then he flushed the upper part, nothing. But just because it had been draining very slow, at the most open setting there is, he replaced the part in her brain anyway.

This is a LOT for our sweet girl. We are beyond over it. We are beyond ready to be home. We are really ready for her to be her happy self again. We've seen a few smiles the past few days but just from us acting silly. So I really need to see her personality come thru again, and shine bright as we know it can.

We would appreciate prayers, so many prayers would be so nice. We know the power of prayer is so strong, and our girl needs that. I will update as I know more.

Post Op Update....

Danielle went to the OR on Friday to have her shunt internalized. The surgery was scheduled to take approx. 4 hours. I had spent the night with her on Thursday and I bribed the nurse, aka. talked her into letting me hold her. The plan was to hold her and snuggle all night long. We hadn't gotten to hold her since she had her first surgery, so snuggling is something that Danielle thrives on so much, and so do we, it was long over due! This mama was SOOO excited!
It is quite a process, clamping her ventric just to move her. Then moving all of her IV cords and then getting her in place, re leveling her ventric and then making sure that her head stays in line. I held her for about 3 hours and she just melted in. It was so good for both of us. She went right to sleep, snoring away and all of the loud noises around that usually startle her didn't even make her flinch. She was out. It was so wonderful and in that moment, all seemed right with the world.

Just before midnight she got really upset and we put her back in her bed. She ended up being up all.night.long. I couldn't believe it! We tried our best to not talk about surgery around and in front of her, so I am not sure that she was anxious, but could have been possibly. She is a smart cookie and misses nothing, so she fully knew what was approaching. From then on, it was a rough night.
Friday morning right at 7am they came to take her to the OR. She was more excited to go for a ride in her crib I think that worrying what was going on around her. I just cannot imagine being in that position, as a little girl, going to a big scary place, again, for another surgery, something that she has had too much of. She is such a hero in my eyes, such a light and inspiration to me. And from a parents standpoint it is just gut wrenching, heart breaking and so so hard to see your child go thru something over and over and over again, that is out of your control.

Finally about 1145 the unit clerk came in and told me that there was about 30 minutes remaining of her surgery. Up until that point I had no updates at all. I figured while she was in surgery I would go down, grab some coffee, maybe breakfast and kill time and come back up to her room and wait. I didn't leave her room, I didn't even get out of the recliner. My tummy was in knots I was so nervous. I tried to sleep on and off because exhaustion was taking over, but my mind was restless think of and praying for our girl. Daddy was also anxiously awaiting updates and unfortunately we didn't get any.

Dr. Wilson came in and gave me an update after surgery, before she was back. He said that all went well. They put the shunt in on the right side and the Pediatric Surgeon ran the tubing THRU her Juglar vein along her neck and into her heart. I did not know ahead of time which peds surgeon would be assisting him in the OR. I was more than pleased to find out it was Dr. Pitcher. We know Dr. Pitcher well, he is the amazing doctor who did 3 hernia surgery's on Dylan. He is a world renown doctor and just a wonderful person. That instantly gave me some comfort. Dr. Wilson did warn me of a few things. That the tubing although in her vein, can move. She will need to have xrays and tests done 1-2 times per year to make sure that the tubing is in the correct place in her heart. Also her movements can move the tubing. This scares me to death. So something to watch for and make sure we don't put pressure on her neck or chest, also the only way we could know if there was a shunt malfunction, is a blood clot. EEEK. A blood clot, in her heart. ugh. this stresses me OUT!

So over the weekend the plan was to just watch her, make her comfortable and let her rest in the PICU. Well she came back from the OR looking really comfortable, but right away I warned the resident doctor, you have got to start extra pain meds because her looking comfortable could change in an instant. Well they didn't listen and guess what, her pain went from 0-10 like NOW. I was so frustrated. The next 24 hours were spent trying to manage her pain. She doesn't really respond to morphine and they wanted her to have that in larger doses, and as I told them would happen, she didn't respond to it. As a parent constantly being on them, its just so hard. My only frustration all along is repeating over and over and over again what works and doesn't to so many different people. They finally put her on Dilaudid, which is a lot stronger and it worked. They wanted to avoid the stronger med, but just couldn't. They also did a MRI and shunt series, which are x-rays to make sure that her shunt was in a good position after surgery. Well the results came back and the doctor came in and told us, the tubing in her heart had already moved. Remember how I said it could move around, just in the few movements she had made a few hours after surgery, it had pushed down further into her heart. This makes me so nervous. There is nothing that needs to be done about it now, but she needs to be closely monitored.
Saturday morning we first noticed that her incision was leaking. This ended up being an issue all weekend long. It was the incision where her previous ventric was and it would go from not leaking at all to leaking a ton, really quick. Sunday morning they decided to do another MRI to get this figured out. because in the midst of her leaking fluid she also started throwing up a lot. They did the MRI and all during the day it kept leaking on and off. So the glue they put on wasn't working. I held her yesterday for about 5 hours and all of a sudden I would feel something wet, her CSF had leaked all over my shirt, its pretty crazy to think about when you realize that its just not fluid, its spinal fluid!! They decided to put in another stitch last night and so far that seems to be working. It is a little unnerving to think that an area of her incision could have been open enough for a new infection to get in. I don't want to think that way but it does make me nervous. They had stopped her antibiotics on Saturday. I am waiting to hear if they will re-start or what they will do. At this point she is still in Intensive Care.

So things have been just ok, I would say. Not as smoothly as we would have hoped. We still really appreciate prayers and positive energy being sent our girls way. I do not know what today or this week will entail at this time. I pray that our girl will heal, be comfortable and be able to come home with us very very soon. Thank you for the prayers and thank you for checking in.

Update! Approaching week 6...

I can hardly believe its been a week since my last update. Not a ton has changed in the world of Danielle so that is probably the best news. They feel like they did get her 'suspected' infection under control. The sensitivities came back the other day and so they did some switching around of her meds. They took her off of the Venco, that drug is just really really harsh and they constantly have to do blood levels before they give each dose, and so her being able to come off of it was good with us.

They added in an additional antibiotic called Nafcillin and then the Rifampin. There seemed to be some confusion on Saturday tho about the Rifampin. The PICU docs took her off of it, well then Monday mama had an intuition and rushed up to the hospital, its a good thing because when I got there the CDC docs were in there and talking about her meds and what she was on. They wanted her to continue to be on the Rifampin, well I explained the PICU team took her off, he wasn't super happy about it and they got her started right back on it. That leads me to the other part of Monday.....

Dylan is such an amazing big brother and often leads the way to sissy. He knows the routine and right where to go. Things that kids should never even know how to do, but he does and has had to learn, and he never complains. 

I was struggling Monday morning. I just had this terrible feeling in my tummy and was feeling even more horribly guilty not being with my girl. We had been the night before and Brad even there that morning and she was fine but something just wasn't sitting well. So I took off and headed up there. I arrived to have the CDC docs in the room, thankfully I was there to tell them about her med being discontinued because HE wanted her on it! Ugh. Second thing was that her feeding tube was just about popping out and that could have been so bad because she had a feeding going and then also she threw up. It was just one of those moments where I wanted to stop time, pick up my baby, block out the outside world and not let anything else in and just run away with her. I know I quickly told myself that couldn't happen and that wasn't reality, but it was a frustrating moment and mama bear came out. I also sat there and waited 45 minutes before I even saw a nurse to come help! This is Intensive Care and it gets very busy because that is where the kiddos are that NEED that care, but I couldn't even bare to think if I hadn't gone up there what would have been going on. Mommy guilt.

We still haven't been able to hold our girl, but when they change the bedding out we get to hold her standing for a few minutes at her bedside, I soak up all the lovin' I can in those few minutes.

So we got her all situated, Daddy was up for the afternoon and evening and all was well. We are approaching week 6 this coming week. Seriously. I can hardly believe it. There is no doubt in my mind that Danielle needed this long to be there and to get well. She was really really really sick for a very long time, and it just goes to show, because it took a week of being there to even begin to figure out what was going on. But as a parent our guts knew a LONG time ago that something was wrong. When we left that hospital last December we knew something was wrong. So a rocky 10 months it took for something else to show so they could investigate further. And here we are.

Here is a recent picture of her tummy incision. We are so happy with how well it looks and how nice it is healing. We were pretty nervous about it before but it looks really good and doesn't seem to bother her at all. She is back sleeping on her tummy most nights which is nice.

She really has been in good spirits most of the time. She is no doubt stir crazy and ready to bust out of there but we keep rotating toys and child life brings in some amazing fun things for her, and us too. We are so grateful for those amazing volunteers!

 



They are looking at doing surgery either tomorrow or Friday to replace the shunt. This is where I beg for your prayers. This is where I get down on my knees and call and cry out to God to PLEASE protect our baby girl. We are sick about it and so nervous. This will be different, but I know that with your prayers and our prayers and the best docs in the world, that she will be ok. Here is the purposed plan, but as we all know, it could change, but as of yet it hasn't. Ok here goes:
They will place a Ventricular Atrial Shunt in Danielle's brain and run the tubing......to her heart. Yes, to her heart. This is where I almost throw up because it makes me so nervous to say that and to even think about this. Friends you thought our girl was fragile before, well I want to put her in a glass case now and protect her even more forever. and ever. and ever and ever. That's not reality either but this just makes us incredibly nervous, because its new.

So the shunt will be in the ventricle of her brain set to drain the fluid at whatever type of setting they put it to, to drain constant fluid. It will again be controlled by a magnet so they can change it to drain more or less fluid at any time. Next they will run the tubing down thru a vein in her neck and into the first chamber of her heart. :-( This is a fairly normal practice for them they say, but not something they do a ton of as priority, because the preferred position for the shunt tubing would be in her belly. But they cannot put it back into her belly because she's had 2 infections stem from there causing issues. I asked tons of questions, stated my concerns and they ensured me that the risk actually is still just as if it went into her tummy, only slightly higher. Easy for them to say right! The Neurosurgeons will work along side the Pediatric Surgery team who will be outlining the vein and placement of the tubing into her heart.

Here is what it looked like before going into her tummy, and here is what the new shunt placement will look like going into her heart.



So I am calling out to my prayer warriors. I am asking God to PLEASE protect our baby girl over the next few days and beyond. Her little body is so fragile. She has endured so much pain and suffering. It is time to get this behind us and let this little beautiful 7 year old girl be a kid and grow and learn and play all the rest of the days of her life! No more surgeries please! We want our baby girl home.
Thank you so much for your love and support over the past 6 weeks and beyond. If you've got them in your heart for awhile longer and would be so kind to send them our way, we would love it so much. We will continue to keep you posted on surgery as we know more. Today Daddy is spending the entire day with his girl and tonight, head shaving party! Yep you've heard it right! Over the past 3 years with all of her surgeries they have only shaved parts of her head that they needed to, we would then let it grow and it would be pieced together at several different lengths. Well Brad and I have been talking and we are ready for our girl to have a fresh, clean start. This girl has rocked the pixie before and now we are going to shave her head so it is all one length and let it grow as one. As we are praying this surgery will do for her, it will be the end resolve for the past 3 years of issues and the old will be behind us and shaved away, only to grow and flourish from now and beyond.

Our Beautiful girl a few years ago when the front of her head was shaved. How beautiful is she and how beautiful are those eyes!

Make today count friends. Hug your babies and show your gratitude today to ALL Veterans.

Thanks for checking in.

One foot in front of the other...

Last night was pretty rough for our girl. It was Mommy and Danielle slumber party night and I was pretty excited! After the day she had, it was such a whirlwind, I was thinking we would hang out and get a good nights rest. Well it didn't happen just like that.

I did get some good smiles early on in the night. She is such a little dolly.  



Danielle was pretty fussy starting around 9pm. Her heart rate was high, she was moving everywhere in her crib, sliding down and just super vocal. Her heart rate was also pretty high. If her heart rate gets above 120 that usually means she's uncomfortable. Its really important to be able to notice this because if you let it go on too long, then you are already behind on her pain control and it takes forever to get caught up because she is so feisty and really can be harmful for her because her pain tolerance is so high. If we see 130-140-150 or even higher, than something is definitely going on. I started noticing her heart rate elevated, she did have a feeding going thru her ng tube, down her nose, and also she just sounded terrible. I was really concerned that her feeding tube had gotten shifted a bit and was maybe either up out of her stomach, or that is was coiled. I had the nurse page the docs. The doc came in and she wanted us to try 4 things first. Stop her feeds, Reposition her, give her some IV Tylenol and do some blow by oxygen, and get back to her in 15 minutes. Well time went on, I was repositioning her often and before we knew it an hour went by. The doc came back in and I really almost begged for an x-ray. I said I just really feel something is going on in her tummy, she won't lay on her tummy, and that is how she sleeps, she is super feisty and the Tylenol hadn't helped at all. She didn't think the x-ray was necessary because her tummy was soft. Oh mama bear was getting a little feisty here. So I backed down and said ok, but if she continues I NEED you to do something else.
About midnight they did rounds on her. The staff doctor knows Danielle well and filled me in on the plan to take care of this new infection. Basically it was Danielle' Anaerobic culture that grew staph. They do an aerobic and anaerobic culture of her (CSF) Cerebral Spinal Fluid daily. So it basically means one culture responds to oxygen and needs it to breed and the other it doesn't. Here is the difference:
Aerobic bacteria gets energy from food when compared to anaerobic, that can survive in places where there is less oxygen, such as human guts. Some anaerobic bacteria also causes diseases in those areas of the human body where there is less oxygen supplied. Aerobic bacteria cannot grow without an ample supply of oxygen involved in a chemical reaction, whereas the anaerobic term does not imply this.
So unfortunately Danielle's Anaerobic Culture is what grew out the Staph. The Staff doctor really apologized to me about this and felt really bad. Because this infection 99% probably came from the hospital. UGH. So after those conversations I climbed back into the recliner hoping for some sleep. It didn't happen.
This fussiness went on for about 2 more hours and I had finally had enough. I told the nurse, you have GOT to do something for her, you have to figure out what is causing this. She is clearly very uncomfortable. So they wanted to pull out her ng tube and place another one. I said NO WAY. Why in the world would you put her thru that! She is already super ticked off and why not just get an x-ray to see if its in position. So they agreed to that.
X-ray came in, took some pictures about 3am and guess what. Her NG tube was smashed up along the side of her stomach. So every time she moved that was rubbing, and every time they tried to feed her or put her meds thru the ng it was probably really ouchy on her tummy. I tell you what, if your a parent, NEVER question your gut instinct. That Resident got a really important lesson from this mama. And I only say that because we know her very well. Granted she dows throw curve balls our way at times, but I just knew that something in her tummy wasn't right and by the way she was acting during feedings etc, I thought her ng was the issue. It was. They pulled it back 2cm and she was like a new kid. Relaxed and she settled in nicely.
All night I watched this feisty little hand waving around, banging her ring toys all along the sides of her crib. She was very particular in making sure I was still there and making tons of noise and not letting me sleep, letting me know that she was uncomfortable and that I knew she was still there. Oh sweet girl, how I love your feistiness You are & always have been the true definition of a Fighter!

 Unfortunately didn't sleep and hasn't really slept today. Tonight is Father/Daughter slumber party so hopefully Brad and her have a really great night together. With her having a new infection also it may cause her to feel a little bit uncomfortable. We believe they literally caught the infection right away, so her labs are still all pretty good. It is just an unfortunate slow process to let the antibiotics do their thing and get that staph out of her head and anywhere else in her body it may be. One foot in front of the other. Slow and steady wins the race right. We don't want to be doing this again EVER, so whatever it takes to get her better now is what we are ok with. 
As always thank you for the prayers, positive thoughts and energy sent to our girl. She is so loved that is for sure and not one prayer goes un noticed. We send you a very heart felt message of Thanks, for thinking of our beautiful girl.  

Curve Ball!

Alrighty, well you may have read my post from earlier this morning about the tentative plan for today and tomorrow. I should have know better than to post what the plan looked like, because it can ALWAYS change. And that it did.

I got there for Danielle's scans today and she was feisty as ever! Super excited to see her mama and telling me all about what she's been up to. The PICU doc came in, told me the plan for the MRI sedation etc, reviewed what they were doing and looking at and perfect, I was good with it. Just before they were ready to take her down, she was extra feisty moving all around. I picked her up slid her back up and her hands got a little grabby and opps, this happened. She thought it was SO funny.

A short time later they took her down and I waited in her room. Now over the weekend they moved us to a nice big room. Full couch, 2 reclines and the huge plus, our own bathroom. We've had a room like this before when she was there for an extended amount of time. Well we are just about to week 4 but are going home soon right.......here's the curve ball.

The docs came by to do rounds but decided to skip Danielle since she was down at MRI. Hmm, that sounded a little off to me so I was already alarmed by that, but ok whatever. So I sat and waited and she came back and was feisty still, you would never have known she was even sedated for the MRI! They said she didn't fully go to sleep and was a bit of a wiggle worm. She sure has a tolerance that's for sure.

So she got settled and the Infectious Disease doc came in. And he brought bad news with him. No surgery for tomorrow. Her CSF (Cerebral Spinal Fluid that is draining outside her body now) the culture from the 31st grew out infection. Staph Infection. NOOOOO. This is what she had last year. Not again :-( My heart is breaking for my girl. This complicates things even further.
First they have to let that culture grow for a few more days to try and figure out exactly what type of staph it is so they can treat it. Then they need to figure out how long they need to treat it for, depending on what kind of staph it is. Last time it was MRSA, which is bad bad bad, and they had to treat it for 3 weeks before they would consider surgery again. This will be day by day until we know what kind of infection this is, there will be no real game plan until then.

In the mean time, what does this mean? It means at least 2 more weeks in the PICU. It means they took her off the current antibiotic ampicillin and now are switching to Vancomycin again and adding in Rifampin. Rifampin if you followed along last year is a hard core drug.
Rifampicin (INN, BAN), also known as rifampin (USAN), is a antibiotic used to treat a number of bacterial infections.^[2] This includes tuberculosis, leprosy, and legionella, among others. Often it is used along with other antibiotics. It is also used to prevent Haemophilus influenzae type b and meningococcal disease in those who have been exposed. Before treating someone for a long period of time testing the liver function and bloods counts are recommended. It is available by mouth and intravenously.^[2]
Common side effects include nausea, vomiting, diarrhea, and loss of appetite. It may also turn urine, sweat, and tears a red color. Liver problems or allergic reactions may occur. It is part of the recommended treatment of active tuberculosis during pregnancy even though safety is not clear in pregnancy. Rifampicin is of the rifamycin group of antibiotics. It works by stopping the making of RNA by the bacteria.

I am struggling to find the words. I was struggling to tell my girl it just isn't time to think about home yet. I am struggling as a mommy, thinking what else can I do for my baby, what else can I do to make this easy on my family. I am struggling to tell Dylan that it's just not quite time for his sissy to come home yet. As the words to my favorite country song say: 'Aint like I'm the only one that's been here before.'  That is so true and what we keep telling ourselves. It could be so much worse. For some family's it is worse. The blessing in all of this today is that they found this infection BEFORE they went in and did surgery tomorrow. Because had they found it after, we would have had to go back in, take it all out and start all over again. Thank you lord for putting this in front of our face today and haulting that surgery when it just wasn't time. The rest we will deal with. A few more weeks we will deal with, or whatever it is. At least we have our baby girl.
I'd love some extra prayers sent to our girl today friends. If you have them in your heart. Thank you Thank you Thank you.

Tests & Surgery, approaching week 4

Its such a beautiful Fall day here in Iowa. I try to find that as the silver lining amongst other things going on with our girl. Here is the great news. She is feisty, sassy and fed UP! Now that is the Danielle that we know.

Neurology came in and talked with us on Sunday at great length about the EEG that they performed on Danielle.
Now whether this is right, wrong or indifferent, one thing that we have really prided ourselves in as parents for Danielle is nutrition. She has been at risk for seizures since she was born a preemie. For the past 7 years we have known that they could occur. However we have really researched a lot of things to try and help her be as healthy as possible, without much added sugar in her diet. For that reason we did not do Pediasure, for example, because the sugar content is high. We fought like crazy with the dietitians over this at one point, until they finally saw our vision. So instead we tried an organic formula for a little while and since then have switched to a more toddler like formula for her nutrition. Danielle also takes a few supplements. Beings she can't eat on her own, we have to support her in any way that we can. With extra fruits and veggies, protein and a couple other things, we have tried to make her diet as well rounded as possible. Is there room for improvement, absolutely. But we just really are so careful about anything we put into her mouth, because we know that diet can affect and cause seizures. So when Danielle had this seizure over the weekend, it not only deeply saddened us, but we realized that it was completely out of our control. There is absolutely nothing we could have done to stop it. Maybe I would have noticed an error if I would not have left that afternoon, yes, and that is mommy guilt, but for any other reason, there is nothing we could have done.

The results of the eeg did not show any seizure activity! This was super great news! They did see some increased brain waves when Danielle was sleeping, that caused them to alert the doctor. Because the lights in the room were not bright enough to clearly see Danielle thru the video camera she does not know what Danielle was acting like at that time, however in Danielle's case she did not believe it to be seizure activity. And when Danielle was awake, her brain was wide awake to she said. Working hard, that made us giggle, because she is absolutely a smart cookie! She has a BIG story to tell us with those eyes. With Danielle's brain hemorrhage after she was born, there is a lot that goes on up in that little head of hers that is a little different than you and I. It breaks my heart. If I could make anything better for her, make life easier for her, you better believe that I would give ANYTHING to do so. But she only knows how she knows to process things and to hear that she is not having constant seizure activity was a good feeling. Now does this mean that this will always be the case for her. Nope. Does this mean we are out of the woods. Nope. Does this mean that we will never worry about this happening again. Unfortunately no. But we do know that the most likely cause of her seizure was medication related, ventricular error by staff, or some other cause that they have not been able to figure out.

After she had the seizure things kindof went into a holding pattern. Neurosurgery needed to make sure she was stable. Neurology needed to make sure she did not need to be medicated. And Pediatric Surgery is still keeping a close eye on her tummy, feedings and how her body is processing all of this stuff that is still going on. Not to mention the Pediatric Intensive Care team needed to re-evaluate every single med she was on and discontinue some ASAP.

Danielle has been infection free for just over a week. This is the best news yet. Neurosurgery keeps taking samples from her ventricular drains daily to make sure that they stay on top of her. Her labs are back within the normal range except for a few things that they are tweaking with IV fluids and watching. So this means we are getting close to being ready for that 3rd surgery to put her shunt back in.

Today Danielle will have a very in depth MRI to map out her head. This little girl has had 13 surgeries on her tiny little head in the past 2.5 years. 13! That just breaks my heart. And from a Neurosurgery standpoint, they cannot use an access point where she had a previous infection. So that means they cannot use one of those precious 13 access points where they have went in before. With her head being smaller than a small melon, this makes for VERY careful planning. Today that is the plan. They also need to look and see where the best place is to put her shunt tubing. Before it would run down the side of her neck, over her clavicle and into her tummy. Well now with a recent tummy infection and the tubing attaching itself to her intestine, this may mean they will run the shunt tubing either to her heart or to her lung. Scary stuff. So today is important for them to see what they need to see and also to get a really good look at her brain with a long MRI since she will be sedated for it.

Surgery is now scheduled for tomorrow, pending the results of today. We are really blessed with some absolutely amazing friends and family. And if you are reading this posting you are one of those blessings to us. To be thinking of our girl. To be praying for her. To be checking in to see how she is doing. We are truly blessed by you. Over the next few days we would appreciate so much any positive energy and prayers that you could send her way. It seems so crazy that on Thursday she will have been at the U for a month. The days have seemed so long, yet so short. Time has flown by and it has seemed to stop at times. Days have been filled with happiness, sadness and uncertainty. All of those emotions you know that come with being a parent. Your heart literally lives outside your body and you just want to take all of the pain away from your kids when they are suffering. Danielle teaches us more about life on a daily basis than we ever expected as parents. And she truly lives each day with a smile on her face. She is happy to be here. She is happy to be living. Even with daily struggles, she doesn't care, she wakes up a puts a smile on that pretty face of hers. If there is no smile, then something is wrong.

I am grateful to have you praying for our family. I am even more grateful to have a daughter like our sweet girl. We are blessed by her. I am sure you have someone in your life that you are blessed by also. Please do me a favor today she tell that special someone how special they are to you. Life it too short to not share the love.
Many Blessings to you on this Tuesday.                                                                                                                                                                    

Halloween tricks can go away!

Yesterday started off so good! Daddy had spent the night Friday, she was happy and comfortable and slept the best yet! Then we were all here during the Iowa game. We brought her Halloween goodies from us and from our It Works friends and from school friends too! She was smiley and in a good mood and probably the most comfortable she had been yet!

We decided that we would take Dylan out trick or treating and then would come back up to the hospital to stay again. Late yesterday afternoon we headed home. We had dinner and just were walking out the door to take Dylan out when the hospital called. My heart sank. It was Halloween. The day had been so good. Maybe it was nothing. Wrong....

She was calling to tell me Danielle had a seizure. What!!!! She has only ever had 1 seizure before and that was when her shunt malfunctioned last November. Brad rushed out the door fast as he could and headed to the hospital.

The night went on and brought test after test. Inconsistency after inconsistency and even as of now we don't know anything. The nurses report doesn't match what the recorders show. The doctors are all trying to figure this out. And it leaves us with minimal answers. This is when that parent guilt comes flooding back. We get a little comfortable, head home for a little bit and bam something happens out of our control and we don't know what truly happened because we weren't here. 

They have this camera on her watching her all the time and electrodes watching her brain waives. So far all is ok. Because of the huge amounts of variables and inconsistency we are not allowing them to do any seizure med. We are speaking with neurology, neurosurgery plus the intensive care docs and looking at the recordings plus the high doses of meds she's on that could cause something like this.

Here is the reminder. Never get too comfortable when things seem easy or settled. There's a higher power in charge and we are reminded once again to trust, to be thankful, to believe and keep the faith that things will be ok. 

On this first day of November if you have extra prayers in your heart, friends we could use some extra. We don't want any more Halloween tricks, it wasn't too fun for this FAM. May the ghosts and goblins be silent 😉

Much love to you today. 

Post Surgery update....Week 2 @ UIHC

Little update on Danielle. Surgery last Saturday went well. They placed the ventricular drains and removed her old shunt catheter from her brain. Her incisions are pretty ouchy and the next 3 days we again struggled with making her comfortable and finding the balance of pain meds and what she needed to calm her down and make her comfy.

Monday she spiked a fever which was SO unfortunate. It was just a low grade temp, but enough to raise a little bit of an alert. This could have been some of her ouchiness or it could have meant that something else was brewing. She also started having some really nasty colored fluid coming out of her ng, which is the tube down her nose that is continuously pumping out her tummy and the air in her tummy. Here are a few pictures that may help you understand a little bit about not only why she is in so much pain, but just an over all picture of what is going on with her.
     This is her Ventricular drain. It takes the place of her shunt temporarily, since she has to always have something that can drain the fluid from her brain for her, since her body can not drain it on its own like yours and mine do. So this ventric goes into the ventricle of her brain and constantly drains fluid outside of her body into a glass tube and then a bag. The flow is centered by gravity. So the ventric needs to be level with her ear at all times so it does not drain too quick or too slow. There are pressure limits that are set also that show on the monitor above her head. It will beep if something is off with the pressure limits they have set. For this reason, we are unable to hold her or pick her up out of bed. If you know Danielle well, and what a snuggle that she is, this is very difficult for all of us. It is going on a week and a half since I have held my girl in my arms and that absolutely breaks my heart. The Neurosurgeons are taking fluid samples from the CSF (Cerebral Spinal Fluid) that is draining out, daily, and letting the cultures grow for signs of infection. We want it to be negative showing that the infection is cleared.

This Is her tummy incision. Absolutely heart breaking. This incision is a LOT larger than they wanted it to be. But her shunt tubing was wrapped so much and tight up against her bowel that they needed it bigger to clear out some tissue and also make sure there was nothing else in there growing etc, causing any issues that they could not see. But this incision is just gut wrenching to me.

 

Tuesday of this week was the first time Danielle really started showing signs that she was becoming a little less painful. This was WONDERFUL news! The weekend was really tough on all of us. Trying to balance her pain with a new drug, rather than just up'ing her morphine was really tough to get all of the doctors and nurses on board and understanding her. She has such a high tolerance for pain that it takes a lot for her to show she's in pain, and if it gets to the point where she is telling you, then its often too late and making her comfortable is a tall task. We spent a lot of time sitting and holding her hand, watching the clock, praying, and doing anything we possibly could to help distract her enough to fall asleep.

 



 



Probably the biggest news over the past couple of days is that her tummy has started to have more bowel sounds. Her tummy is waking up from her 2 surgery's and they have decided to try and feed her starting in very small amounts. They are using a tube down her nose and they have it hooked up to a pump giving her 5 cc's over the course of one hour every hour for 12 hours and then if it goes well they will up her feeds from there. This is wonderful news. Although they have been giving her nutrition and lipids thru her PICC line, this is the good stuff that she is use to having!

That is about all the update I have for now. It is just a waiting game at this point to get her CRP number down below 0.5, which it is still at 10 as of yesterday. And also making sure that all of the infection is out of her shunt etc before they decide to put it back in. We are anticipating at least another 1-2 weeks in the hospital if things go as they are now, slow and steady. Tomorrow marks the completed week #2 and the start of week 3. I cannot believe it. I just cannot believe we are facing this again. I swear Brad and I are running on auto pilot, trying to balance jobs, kids, hospital, time etc as much as we can. If you have prayers we appreciate them so so much. Prayers for our girl are the most important and then prayers for us as a family, that we will be home again together before the Holidays.

Sending love to you on this Wednesday.

Surgery # 2 today.....

Quick update.....last evening the docs came to Brad and I and told us that the culture from the day before that they took from Danielle's CSF (Cerebral Spinal Fluid) from her shunt, had bacteria growth. This meant that part of the shunt that they had left in, now had to come out. UGH. Absolutely disappointing for Brad and I and most importantly Danielle, but this also complicates things a lot further.

So last night was rough. 3 am MRI that she wouldn't sit still for. Very painful still even with increased pain meds plus a muscle relaxer, and the MRI picture they got was not clear enough. So later this morning they took Danielle into surgery to remove that part of the shunt in her brain. The surgery was a success, she now has the ventricular drains in place. This is a drain that goes into her brain and drains into a bag with the flow of gravity outside her body. The super sad part about this, we are unable to hold her. It is crucial that her ventrics be adjusted and stay with how she is positioned to make sure that the flow of fluid out of her brain is just right. Here is what it looks like, I will show you on Danielle later, or you can revert to last November's post for pictures of her:

This likely will mean a couple of things. For sure another brain surgery down the road, when she is infection free, to put the shunt back in. It is NOT an option for her to not have a shunt, she has to have that to live. So another surgery at some point.
And also potentially several more weeks in the hospital. Plus with all of the recent things going on with her tummy, finding a new place to run the new shunt tubing from her brain. Before with all of her shunt's it has been ran into her tummy, well now they are thinking that it will have to drain to her heart. This is scary and I am just trying to take this all one day at a time and not think about that just yet.

So they will continue to take cultures daily. When she has her first negative culture they will then need 2 more negative cultures, so many days apart before they will go back and put her shunt in. As far as her tummy, that will be yet determined by the Pediatric Surgeons in the days coming.

Please please please, if you have it in your heart, pray for my girl. I am just absolutely sick that we are here again, in a similar place with a very very scary situation on our hands. I am just sick that she will be there for likely a few more weeks at the least. Please pray for comfort. I really really am stressing that they need to get her pain under control. She has been too painful up to this point and we need to figure out something else to keep her comfortable.

I will update again probably on Monday unless something changes. Thank you so much for checking in. Thank you for keeping Danielle in your thoughts and prayers, it means the world to Brad, Dylan and I. Hug your babies friends.
Much Love on this Saturday-

Surgery update.....

Danielle's emergency surgery on Wednesday went well. She was in for just about 4.5 hours and the surgery was schedule for 2-4. So I was pretty nervous waiting and waiting and not hearing anything. No updates was hard on this mama. Because of the quick timing, Brad was taking care of Dylan and the activities he had going on. My Dad surprised me and drove from Des Moines and showed up with dinner right as her surgery got done. It had never felt so good to see a family members face in my whole life. It allowed me to break down which I needed.
For surgery they wanted to go in with a small camera, in an incision above her belly button, and look around. Then Neurosurgery was going to be working on the top part of her body and removing her shunt. The really good news was that neurosurgery was able to remove only the part of her shunt that was in her tummy, they did NOT have to take out the part that is in her brain. That was  HUGE relief. That part had not been infected and it is pretty traumatic having surgery in your brain and if they could avoid it at all cost, that is what they were going to do.
The Pediatric Surgeon was not able to look around with the camera so sadly, she had to make the incision quite a bit bigger. What she found when she was in there, was that the shunt tubing was adhering to Danielle's intestine. There was a large part of her intestine that was VERY angry. She said it was moderate to severely irritated and angry. She described it as if you get a cut on your arm, and it gets infected, and red and inflamed. She said a part of her bowel was the same way. At that point she pretty much ruled out the partial bowel obstruction, but rather it was inflammation that was causing a lot of the issues.
She was able to thoroughly rinse everything out. move things around and take a VERY in depth look in there to see if there was any type of abscess etc. Nothing. So Neurosurgery took the shunt tubing out and she cleaned out the rest and looked around and that was about it. During surgery Danielle's blood pressure dropped quite a few times and did get pretty low. So they were keeping a very close eye on her to make sure she recovered ok.

When she got back to the room and was intubated, with the breathing tube. I was not surprised and quite frankly this was going to help her rest more peaceful over night and let her rest and not worry so much about breathing and resting. Well we quickly learned that her level of pain was high. She was very uncomfortable. Flailing around quite a bit and over the night it took up'ing her pain control meds quite a few times plus adding in sedatives several times. This absolutely broke my heart but it was needed. Her labs also came back and her hemoglobin had drastically dropped after surgery which meant she needed a blood transfusion ASAP.

Thursday morning she was showing signs that she was ready to get that breathing tube out. She was starting to wake up a little bit and flutter her eyes about. I talked to her and she immediately started to cry. It absolutely broke my heart.

Yesterday afternoon they were able to take out the breathing tube and just have her on regular room air. Poor little peanut tho is so painful and sensitive. You can tell she doesn't feel good. Any little noise makes her scream and cry and she really just wants you to sit beside her and hold her hand, it absolutely breaks my heart.

A couple other things going on. She has a catheter in because they want to monitor her bladder pressure because they did surgery in her stomach. She also has the ventricular drain in, coming out of her clavicle. So because the top part of her shunt, in her head, is still in place her shunt is still functioning. But they took out the tubing that goes from the clavicle so it needs to be able to drain some where. So they have a tube coming out of her clavicle area and draining into the drain like before. Because of all of this, we aren't able to hold her. Last night I was able to make some silly noises and get her to smile. But really she just wants loving right now and that's what I want to give her. She is so deserving of that and more, it breaks my heart.

We will continue to keep you updated as we learn more. I need to meet with the resident now and see what the findings of today have been. Stay tuned for more updates. We really appreciate all of the prayers that you can send our way and give our girl.