Tuesday, April 23, 2013

May is for Miracles......

May is for Miracles in many ways. We are asking for one of our own and we are believing and trusting that this will be her time.
I arrived home from work yesterday to a voicemail on our home phone that we needed to talk about pre-op for Danielle.....huh? I was puzzled and a little bit fearing that they were going to continue with surgery for this Thursday. Of course at 515 at night the clinic is closed so these thoughts weighed heavily on my mind all night long.
Just a few minutes after 8 this morning I couldn't have dialed Neurosurgery any faster than I did, almost in a panic to get clear information! Here is the plan as of now, as we all know, it COULD change. But let's hope not!
*Next Monday, the 29th we will head to the U to have Danielle's sutures removed.
*Wednesday, May 1st, she will have a T2 MRI scan and we will meet with her Neurosurgeon. This was a blessing because before she had not been set up to have another MRI for 5 weeks and I was a bit worried that her new shunt may be draining too much fluid too fast and we wouldn't know. Now we will, this will give a great picture of how both of her shunts are performing and what the new 3rd ventricle cavity is looking like as well as the cavity on the right from her 1st shunt.
*Thursday, May 9th, we will head to the U for pre-op appointments.
***Friday, May 10th, SURGERY DAY. This will be the same surgery that was set up for last week that he changed at the last minute. He will go in thru the base of her brain, above her spinal chord and under that main artery. It is extremly serious. See this previous post for the description. Surgery Description....

Yesterday, our in home nursing care resumed. It was a very quiet day for Danielle and she was pretty quiet herself. She didn't eat any of her bottles for the nurse, which I kind of expected since her head is still pretty ouchy. She did need a couple doses of Tylenol, which was very understandable especially since I hadn't given her any the night before. Last night she was hungry but I could tell that it may have been a little painful for her to get that hard suck going to get all of her bottles completed, she did but it did take some extra time.
She was up in the night, ugh, so at 1:30am I did give her Tylenol hoping it would help her fall back asleep. Nope she started fussing at about 4am.
Now this morning she was more like herself than she had been yet. So maybe her getting up in the night was less pain and more hunger? I sure hope so! She did her big giggles when I got her up out of bed and took her bottle with no problem at all. This was a really great sign hoping that this is her feeling pretty good and the first time we had heard those big giggles since before this last surgery.

So this May, lord, please let us see a Miracle for our little girl. Please protect her Neurosurgeon's hands in this extremely serious 7 hour surgery. We pray this is the last of these surgeries for our girl and that this summer she can relax and recover and grow and be all ready for Kindergarten in the fall!! Where has time gone?! Kindergarten already?! We are so excited for the wonderful things she has coming her way, just need to get thru and past May 10th first!~
We are hoping this is the beginning of a wonderful Summer for our girl! There is lots of fun to be had for both of these Holub kids after we get thru this Surgery!
We are better when we are having fun together! Let the healing begin!

Sunday, April 21, 2013

Recovering at HOME!

The remainder of our week went slow and steady! Wednesday and Thursday brought more testing for Danielle. We had spoke to Nephrology and Urology and they wanted to do a VCUG Scan testing Danielle's bladder to make sure that she didn't have any bladder reflux. Thankfully this test came back negative! She was sleeping really well Wednesday into Thursday, waking only for brief times during the day. We tried to slowly wean her off morphine but it became very clear that she definitely needed the Tylenol every 4 hours to take the edge off.
Urology did a repeat urine culture on her and tho it did not grown any bacteria it still showed the UTI in place. She is still on the antibiotic and will be retested this Wednesday at home. They are keeping a really close watch on her labs seeing if any of the numbers change showing them anything additional may be happening with her kidneys. Her potassium, Creatnine and BNP all tell the doctors what is going on. She does have a GFR of 42 which to my new understanding she does have Stage 3 Kidney disease. Again this we are thinking all stems back from her being premature. This is not something new, yet it is something that probably has been gradually getting worse over the past 4 years but because she has not had to have these labs regularly it didn't raise any concerns. She will be followed again in a month by Nephrology and at the beginning of June with Urology and they will do a couple more tests to test for some different things to get a good baseline on her. They are monitoring her for what is called Nephrocalcinosis:
Nephrocalcinosis is a disorder in which there is too much calcium deposited in the kidneys. This condition is common in premature babies.
***If your child is diagnosed in stages 1, 2, or 3 of CKD, she probably won’t have many symptoms, but her kidneys won’t be functioning the way that they should, which can lead to complications. Here’s how we treat these complications:
  1. If your child’s kidneys aren’t properly regulating the acid levels in her blood, this may result in a condition called acidosis, which doesn’t have any symptoms. We can treat acidosis with bicarbonate, an oral medicine that balances the acid levels.
     
  2. The kidneys regulate the level of calcium and phosphorous (minerals necessary for bones to continue to grow) in your child’s body. If they begin to lose the ability to do this, we can supplement those minerals with activated vitamin D, medicines that prevent the absorption of calcium and phosphorous, and regulating her diet.
     
  3. Your child’s blood pressure may start to go up, and if we treat this with blood pressure medication early on, we can minimize the risk of cardiovascular disease as the condition progresses.
*** The good thing about what is listed above is that we are already doing Vitamin D supplements. Our pediatrician is HUGE into Vitamin D supplements as many people, children and adults, are walking around Vitamin D deficient and don't even know it. And soaking up a little more sun doesn't raise those levels :) Danielle's blood pressure is fine but will be monitored. She is not on any medicine for any of this at this time and we hope that remains.
Thursday her Neurosurgeon turned her care over to the PICU floor docs. She was doing pretty good, resting, sleeping and beginning to eat and her vitals were well, so from their standpoint she was recovering well. The PICU thought that her level of care was stable enough that she could be transferred to 3rd floor Peds Recovery, so that is where we went.
We got to a nice private room that even included our own bathroom! This was an amenity! Danielle settled in really nicely and she was even able to put on her own pj's! Oh how that had to feel so good. She was non stop smiles and we heard a few words from her. We didn't have an order for morphine on this floor so we were officially weaning her off at this point. The evening went well, I was able to get out for a few hours and head into work and have dinner with my Mom, and Daddy held the fort down. But as the evening turned into night she was restless. She slept but not as sound as the previous two nights and by 430am when Brad left for work, I was in the recliner holding her. Neurosurgery came in about 630am and checked her out. I asked about a repeat MRI scan and they didn't think it was necessary, yet her bandages did need changed.
About 9am the PT and OT came in to check on us and that is when they first mentioned we may be going home! I was surprised yet feeling confident that if they thought we could go I would welcome that idea. Her IV had come out and they changed her antibiotic to PO. She was so happy to get the IV out of her foot and this made feedings a little easier yet her head was so sensitive that it made holding her a bit of a challenge. So home only made sense at this point vs. another IV poke!
By 11am the floor docs and come in and said that they would be willing to discharge her if I was comfortable. Of course I was! Resting and healing at home would be very very good for her. Neurosurgery had come up to change her dressings, about 5 minutes later they still came unstuck from her head but it was worth a try. They don't have them completely covered because the air is good for them but it is EXTREMELY nerve wrecking seeing the stitches as the bandage pokes up! I also asked them to check both of her shunt settings before we went home so I knew that they were at the correct setting still.
By about 2pm we were ready to start heading home! I did some picking up and soon realized that we had enough crud, bags, etc and how in the world was I going to get this stuff plus Danielle to my car?! Brad was working and didn't even know we were getting discharged. Well my brother in law came to my rescue! Thankfully, Nick was already down there at an appointment and stopped up to see us just at the perfect time! He was a tremendous help and sat with Danielle while I pulled my car up so I didn't have to take her out into the wind and cold weather that we had on Friday. As soon as I put her in the stroller tho she knew we were heading home and she was so happy. Sweet girl had just been thru a whirlwind of a week and a serious surgery and home was going to feel so good!
This weekend brought a lot of rest and relaxation. Friday night our nursing company came back out for a 2 hour appointment and did a re-cert on Danielle. They went over everything additional that they will be looking for. The timing was perfect as they will start back up on Monday. Her level of care will be the same yet it will be crucial to keep her stimulation way down. We barely have the TV volume up and Dylan has been gone all weekend with my Dad so there has not been any extra noise. She is very content laying in her bed during rest time with only the noise of the fan or during the night sleeping ever so sound in her bed. Saturday morning tho I woke in sort of a panic, she had fallen asleep Friday night at about 630 after not taking a bottle. Saturday morning at 730 she finally woke up and I went in to find her top bandage completely off of her head! Aaaahhh, it freaked this Mommy out! I quickly washed my hands and put it back on, that will be a challenge and it has already proven to be!
She hasn't been too active, only occasionally playing with her toys and kicking her legs up and down. We have heard her sweet voice a little bit here and there but she does have big smiles on her face. Her head is extremely tender. While holding her it was not uncommon for me to rub the back of her head and play with her hair, now even a touch of her hair makes her cringe and whimper. It breaks my heart yet I can only imagine how extra sensitive and ouchy her head is. Tylenol is still needed about every 6  hours. She is drinking her bottles ever so slowly but that is ok. She isn't back at her full eating schedule yet but that will come, after all it was almost 3 days that she didn't have any food so it will take a bit for her tummy to be hungry again like before.
Of course just our luck that the pharmacy's in CR do not carry the liquid form of her Cipro antibiotic. Sometimes the U prescribes difficult meds to get. I should have known. so we did try the pill form crushed up in her pouch food and that was an epic fail. She began vomiting and we knew that wasn't going to cut it. Today Brad went back to the U and got the liquid form that we will continue for 2 more days.
It has been a bit of a challenging week for us all, yet it did seem to go by fast for me at least. I was ever so thankful for our families to helping out with Dylan and my Mom who came here from PA to save my sanity while Brad went back to his regular work routine on Tuesday. And of course my so wonderful Aunt Ellie who works at the U and who came to visit us several times during each day to check up, bring me breakfast and it was great to have her take on what the doctors were saying and the nurses as well. I don't know what we will ever do when we are there for appointments or for surgeries when she decides to retire one day!
This weekend we all are really missing Dylan so much yet it was crucial for Danielle to keep our house as a healing place for her, so he continued plans to be in Des Moines with my Dad. He has had a lot of fun at the park, making bon fires and today even attending Professional Bull riding! It will feel so good to have him home tomorrow evening, I can't wait to do a big group hug with both my kiddo's. They know how special that is and it is an important part of our daily routine.
I can't help but reflect back on a Daily Devotional that was in my readings from Monday, April 15th, the day of her surgery. It says this, : The strength of our faith is in direct proportion to our level of belief that God will do exactly what He has promised. Faith has nothing to do with feelings, impressions, outward appearances, nor the probability or improbability of an event. If we try to couple these things with faith, we are no longer resting on the Word of God, because faith is not dependent on them. Yet we tend to retreat from the exercising of our faith instead of welcoming it. When trials come, our response should be, " My heavenly Father has placed this cup of trials into my hands so I may later have something pleasant." Trials are the food of faith. The closer we come to this point in our inner being, the more willing we are to leave ourselves in His hands and the more satisfied we are with all of His dealings with us. Then when trials come, we will say, " I will patiently wait to see the good God will do in my life, with the calm assurance He will do it."
That explains so much in our life. We need to follow and put our trust in his hands and thank him daily for that he has done. Life lessons? Absolutely! We are thankful, and praying for a very uneventful week and lots of recovery for our girl.~

Wednesday, April 17, 2013

48 hours post-op....

Today marks 48 hours post-op. Last night was a very good night for Danielle. Basically she has been sleeping consistently since our 2 hour nap yesterday afternoon. This has been almost our best news yet. We finally feel like we have her pain management under control. When she wakes she does fuss and cry but is able to either calm herself back to sleep or fuss for a bit, then settle down and fall asleep.  This has brought her MUCH needed rest. We are still doing piggyback Tylenol and Morphine every 4 hours for Tylenol and 2 hours for Morphine if needed. We have repositioned her almost every time she wakes, her preferred position is up on the boppy on her right side and a special pillow or donut under her feet or legs. Her legs after surgery were extremely stiff, and those of you who know how stiff Danielle can be....well take that stiffness times 10. It was very concerning I am finding out now.

The Neurosurgery team came in this morning shortly after 530 and did their morning look over. They didn't wake her which was really nice. I mentioned to them my concerns with the Nephrology team and what is going on with her kidneys. They said they would talk to the PICU floor team regarding that.
Around 6 this morning the Staff Nephrologist came in to talk to me a little bit about the concerns with her kidneys. He was SO nice. Much more kind and gentle than the student who was in just before 10pm last night! He stated his concerns with her labs and her kidney ultrasound....as well that her kidney function levels aren't the greatest. I expressed my concern to him because this is such a shock to us. We have had no issues with this before and why is it a concern all of a sudden? He explained it as something that will they will follow her for approx. every 3-6 months and stay on top of it so it doesn't get worse. That explanation to me was SO much better! She is at Stage 2 for Kidney disease. So kidney disease can be silent and it doesn't mean that she isn't urinating, because that definitely isn't the problem. Sometimes kiddo's can urinate and it isn't filtered thru the kidneys to get rid of the stuff the body needs to get rid of. Again he reiterated this is mostly as a result of her prematurity and also from being on high calorie formula for so long, as well as being given direutics in the NICU. So they ordered a nuclear radiology test today to scan her kidney's and check for scaring among other things. This is the first kind of test like this for her. We were very curious as to how it worked and honestly weren't too crazy about her being injected with the nuclear dye. So in the scan, the good cells in the kidneys basically eat up the nuclear dye and what is left shows if there is any scaring in the kidneys.
Her Neurosurgeon came up this morning around 930 and said he had been here since 6am reviewing again everything on Danielle, recent labs etc. Her increased stiffness in her legs brought him far more concern than we realized yesterday. His first thoughts this morning were infection, but then he was thinking, no, because she's on antibiotics and internal brain infection would set in at least 48 hours post op. He then thought that maybe she was having increased pressure from the base of her brain in the 4th ventricle so he went ahead and booked the Operating Room for her next week because we need to get that fluid off soon so he would do the original surgery from Monday next week, then he rethought that, and was looking at her labs and her kidney function, and said that those levels being so high could be affecting her body. Just after he said that he looked at her and she was raising her legs on her own and moving them as I was holding her. That right there he said was really good news and that we are taking a day at a time and better labs are showing improvement in her stiffness and that he was content with. Lots of emotions in a very short time for him and us as well. He said we are staying in Intensive Care for now. She is not as Critical anymore but still needs to be in the Intensive Care unit because her brain still went thru a type of trauma during the brain surgery. She continues to perplex him every day and he is continuously looking and staying on-top of everything about her. That right there is the sign of a remarkable doctor.
Later this morning one of the Neurosurgery Residents, who we know well, came in and changed Danielle's bandages. The top incision is far larger than we expected. The second incision happens to be an incision from her February surgery which they re-accessed. That was surprising to us because they said they would not do that, but her head is so small and she already now has 4 scars so I am glad they did not cut her again if they didn't feel the need to.
This top incision is a lot larger than we had envisioned. You can see it is 'L' shaped and that is where the reservoir is for her shunt and they inserted the shunt catheter there and slid it down behind her ear. It is hard to see behind her ear because her skin is so pale right now and I can't move her to get a good angled picture. This incision is ouchy, it explains a ton as to her increased pain level.
Poor babe.

She slept all morning and didn't require any morphine or Tylenol for about 5-6 hours which was good news. But as soon as she wakes I ok them to give it to her because we cannot fall behind on pain control like happened on the first day. This afternoon her nurse took her down to Nuclear Radiology for her scans. They had come up late morning and injected her IV with nuclear contrast and it had to sit for 4  hours before the scan. I did not go along, it made me extremely nervous so I sat in her room and tried to be very patient waiting her arrival back. I was pleasantly surprised when she returned just over an hour later, the nurse said she slept thru the entire scan. What a little angel.
This evening Neurosurgery had called the Urology team to come speak with us. The difference between Nephrology who we had already spoke to and Urology is that Urology deals with more of the plumbing and the bladder, plus the surgery side if need be. We spoke to a Resident and she was very very nice. She asked at least 100 questions which was ok, and informed us of what they saw on the scan today. There is some scaring of her kidneys and they are trying to figure out where that came from since she has not had any UTI's until now. Her Kidney function is lower about 45% and 60%, stage 2 so it does need to me monitored. She ordered a straight cath on her and the nurses came in and did that. That will be a more accurate urine test and as she said they will look for what they need and be done and move on. We liked her motto! They did a straight cath on Monday but apparently it got contaminated in the lab. Ugh.
So tonight hopefully she will continue to sleep and get lots of healing rest. It has been very quiet up here today and last night which was fantastic. The unit is still at full capacity but we are at the back which is great. We have not heard any game plan on going home. If for some reason he still has the OR booked for next week for the other surgery then we would not go home. I am not very comfortable at this point taking her home right now. She is still just a few days past a serious brain surgery and has a LOT going on. They mentioned we would be here at least a week and that is what I expect. They are still figuring things out on her. I expect them to get another MRI scan on her maybe tomorrow or Friday to again monitor her shunt settings and take a look at that cavity on the left.
A day at a time. An emotional roller coaster, yes. But I have to say I feel a LOT less tense here than I did at home. We have been told and shown several times over the last week how carefully she is being monitored and that is a really comfortable feeling. If being in the PICU means that they continue to watch her extremely close for anything, well then so be it. We will adjust. We have still been unable to get a room at the Rossi House, they are still full. Which other than a place to keep our stuff and a clean shower we are managing just fine. I throw my socks away after I use the Family lounge shower, its all good :-0 This rainy weather today made for great napping, mommy took advantage of that a little bit when Danielle did and it really did us both good!

Our little Dylan really deserves the big brother of the year award, he has been such a kind soul during all of this. He is in great hands with each of our parents right now and we have heard from my Mom and Brad's parents both how he is really missing his little sister. He even woke Sunday night before we left and came to me, he looked very sad and I asked him what is wrong, he said, 'I'm not doing so good Mom, I really want to go to the hospital with my sister.' That broke my heart, he is so concerned and absorbs much more than we realize. There is one thing for sure Danielle misses him dearly and it will be a very special day when they are reunited together at home. In the mean time thank you to our families for putting him first in your lives this week and caring for him and giving him lots and lots of love. We miss him just as much if not more than he misses us.~
 Another reason why being a parent is such a special gift. While it is extremely hard watching our children endure so much pain and it is very hard to understand and a helpless feeling, we do our best to comfort and to show them unending love. I do not know why our girl is going thru all of this right now but one thing for sure, even today it was reiterated to us, she is teaching daily life lessons to a lot of people around her. Seems so small for all of the pain she is going thru, for the suffering for others to learn, for that.... my heart breaks. We as parents try and do our part to walk with them thru every battle and loving them along the way.

Tuesday, April 16, 2013

Change means everything......

Monday, April 15th-
We awoke to a very happy girl despite not eaten for 12 hours she was a happy little thing and on the car ride to the U she had a LOT to say. She chattered the whole entire drive down. Brad and I tried to explain to her how her Neurosurgeon was going to help her be an even bigger girl.

We arrived and got checked into the day of surgery. We got her in a gown and immediately she knew something was up. She knew she had been thru that routine before and her demeanor changed a bit. Anesthesia came in and we gave consent and Brad got dressed in his garb so he could go along to take her to the OR. Anticipation was taking over. Neurosurgery came in and marked her area. Anesthesia came in to take Brad and Danielle back and asked if Neurosurg had told us of the new plan, we looked at each other, 'um no'. They were going to send the Resident back in after Danielle was off to sleep. We gave kisses and they began trekking back to the OR, a few minutes later I see them all walk back to the room. There was a significant change in plans. The Resident came in and explained that our Neurosurgeon came in the night before and reviewed her scans, he changed the plan of action because the main artery which he would have had to go under made him rethink things. The new plan was to go in on the left frontal and place a new shunt that would instead drain the 3rd ventricle. Brad and I were perplexed but we trust him so much that we were ok. This meant a possible shorter surgery, and that's all we knew at that moment.


The prep time took just over and hour. We waited and waited and waited more. We got updates as they were starting and then when they were closing her up. Shortly after, her Neurosurgeon was waiting to speak with us. We went in the consult room and he was getting scans up on the computer to show us.
It was  his explanation that gave us even more clarity in our hearts of why he is the BEST. It was Sunday afternoon from his home office that he began reviewing Danielle's MRI and MRV scans from a few weeks ago, he also went back and reviewed her MRI scans from 2010 until present. He began  noticing in the recent scans that her right shunt was doing its job wonderfully of draining the fluid on that side but what was happening was it was pushing that cavity towards the left and the 3rd ventricle cavity was becoming very very large and filled with fluid, this was new. It had been gradual over the past 2 scans but both sides must communicate and it was then that he told us that if he didn't drain this 3rd ventricle on the left side of her brain and the pressure continued to build, she could die within 4-6 hours. Her pressure was high when he started the surgery yet usually after the child is given anesthesia the pressure goes down a little bit, Danielle's pressure remained the same. This 3rd ventricle needed to be drained NOW. The only way to do this was to place a new shunt on the left side. It had to be a programmable magnetic shunt, like her right one, because otherwise there would be no way to safely control the drainage. The pressurized valve shunts are about a setting of 1.5 and hers needed to be lower than that, the lower the number the more open the valve is to drain more fluid.
THANK GOD he decided to go in and review these scans in great depth the day before her surgery. He then came in Monday, the morning of her surgery to review more. You see, his explanation was that if he would not have reviewed the scans and noticed the amount of fluid building in the 3rd ventricle, then if he would have went in from behind under that main artery and drained her 4th ventricle everything from the top of her head would have fallen out from the pressure, she would have died. His expertise has once blown  us away. He told us several times again how perplexing our daughter is to him and he is not content until he knows that everything with her is how it should be. We agree, yet we are so incredibly thankful and blessed to be under his care. He is absolutely amazing and as he said he takes his patients home with him and it really shows. He again saved our daughter and we are so overwhelmed with feelings that it is hard to explain. He looked at us and said, 'I'm sure you have an unbelievable guardian angel watching over your daughter.' Brad and I smiled because we know exactly who it is, yet I made sure he knew how incredibly blessed we feel to have the worlds best Neurosurgeon for our daughter.
What does this mean, what happens to the fluid in the 4th ventricle that cannot remain there? Well, this new shunt more than likely will not drain that fluid, it isn't set up to. Could it, maybe. This does mean that the very long 7 hour surgery that we arrived at the U for on Monday will probably happen in the future, we are unsure when. This had to be taken care of first and it was caught before the worst case scenario happened.
We went in and met Danielle in recovery. She looked good and Mom even got a few very small smiles. Those smiles mean SO much.
We stayed there for about 40 minutes and then got our room in the PICU. It was about an hour after she got settled that her fussiness began. She fussed and fussed. Despite the morphine every 2 hours and extra strength Tylenol she cried and cried. It was gut wrenching. She would sleep for a few minutes and then any noise she would he would startle her and the crying would begin. I mean the squeak of a shoe on the floor would make her jump like crazy. We have been unable to get a room at the Rossi house due to them being full so we are sleeping in her room. This evening..... the rough patch began.

The evening brought her first bottle of juice which she welcomed but she fussed because she couldn't settle enough to quietly drink it. Her doctor came in to check on her before he went home and said she would be ouchy for awhile. The night brought more frustration. This PICU is full and that meant that backup nurses were brought from the Ped floor. We had a ped nurse and they aren't the same as PICU nurses and this mommy was unhappy. There were several outside of our room distractions going on that could have been prevented in a hurry and at 2am I spoke up! I tried to hold Danielle and console her and give her more juice and she would startle so much that even mommy holding her didn't do the trick, that was gut wrenching. All night long, nursing frustration continued and she cried and cried. Morphine and Tylenol weren't really working and sleep came a couple times in like 15 minute increments. The night was rough. Really rough, our happy girl was no longer. A girl that never ever cries was very very unhappy and ouchy.
 Tuesday, April 16th-
The Neurosurgery team arrived around 5am and checked over her bandages etc. I notified them at that time that we felt she was in a high amount of pain. They ordered a MRI to check her new shunt and see that everything was working properly.
Around 830 the nurses took Danielle down for her MRI. I was extremely frustrated at this point and opted to stay back in her room and let the charge nurse take over. Danielle arrived back up about 40 minutes later and the scans were a success without sedation.
Labs were drawn yesterday and it showed that her Sodium levels were a little high. That was monitored all day via blood work. They are also keeping a good eye on her H&H because she was extremely pale last night and they wanted to make sure that they didn't need to give her a blood transfusion. Thankfully her levels have remained ok and that was not needed. A UA was taken tho and Danielle's creatnine (kidney function) level was high. This was noticed before her surgery in February also and that is when we noticed she had a UTI. She is being treated for another UTI now with IV antibiotics that cover secondary infections. Yet the Nephrology team was on the PICU floor today and was made aware of Danielle's level. They did some research on her labs and from her time spent in the NICU and noticed she did have a UTI while in the NICU as well. Although she has not had any concerns until now the Nephrology team did want to get an ultrasound of her Kidney's to make sure that nothing is mechanically causing the recent UTI's. The ultrasound was done this afternoon and she tolerated it really well. Tonight the fellow doc came in and showed Brad and I the ultrasound and was telling us that she shows signs of some kidney disease. She's not sure why her levels are elevated maybe because she was a preemie an on diruetics for so long and higher calorie formula. They will do more labs in the morning to check some other things. Both of us are a little irritated that at 950 at night she comes in and tried to scare the hell out of us with this etc. We have seen a similar ultrasound in Dylan and even moreso we have had NO concern whatsoever in Danielle with any of this. Very strange. We will let them test etc but there is one thing for sure we will be speaking to someone else about this tomorrow for sure.
We began her formula feedings this morning and she has had 3 full bottles and was very happy to have that rather than apple juice that's for sure. It was a positive sign to see her drink well.
Finally today around noon, after a bottle her and I and Grammy were able to get about a 2 hour nap in, that was the first sleep in 24 hours and it was needed! It felt so good and after that nap I noticed Danielle calming down a little more easily. Although she is still very fussy and crying she has calmed sooner and even fallen asleep on her own late this afternoon and evening.

Her Neurosurgeon came around this afternoon and gave us the great news that her MRI scans looked fantastic. Both of the shunts are set at the exact same setting and the new one on the left side he has seen a tremendous improvement in the cavity already. Her doctor even gave us a smile today, he was pleased. I notified him of her constant pain and he was understanding and said it is to be expected. He is so wonderful that he even took care of our nursing concerns with no issues. A couple of nurses were talking amongst themselves about Danielle moving down to the Ped's floor. He overheard them talking and directly said, 'you do not move my patient without my order. You follow my rules with her and she isn't going anywhere. I rule her orders.'
This was very reassuring to me that nothing can be changed without him calling the shots, the exact way it should be!
She is resting comfortably now. The night nurse will be in any minute to do cares so that will probably wake her. But we are hoping for a very good night with her with lots of rest, moving in the right direction with good scan's today and less pressure in her head was a great start. We are hoping that continues.
Things have not gone as planned again and that is ok. Change means everything and to us it means having our daughter with us for many more days, years etc. She has a very full life ahead of her yet. It is very evident that the chronological order of events are happening for a reason and there has been intervention when needed by the very best doctor to ensure that we keep our daughter with us. We feel we owe him so much, yet he feels his job is not done. We are blessed to be here and blessed to have today. No matter the small circumstances in between we will continue to do what is best for our girl, and the very very best is what she will get.

Sunday, April 14, 2013

The time is near.....

24 hours from now we pray our daughter will be thru surgery and on the road to recovery for her new life with endless possibilities.
Friday started at the U early for pre-op checks and a recheck with her Orthopedic doctor. She was SO excited to be out of the house and riding in the car with her big brother. It was evident as she watched him on the car ride all the way to drop him off at school, the smiles were from ear to ear!
All looked good from her Orthopedic doc's aspect. They did a hip and pelvis x-ray and it looked virtually unchanged from before and maybe a tiny bit better. From there we went to see the Neurosurgeon's ARNP for a pre-op check and consent. From there we went for labs. All looked good, it did come back that she still has a bit of a UTI which we are again treating.
 This is how we try and protect as much as we can while at the hospital. We cover her up in passing to try and keep those germs away! She is such a trooper!
And she is so sensitive. During labs while waiting our turn, when she heard a couple other kiddo's cry she puckered her lip up in an instant.

8 am tomorrow morning she will be under the direct care of the worlds BEST Neurosurgeon. We cannot do anything besides hope and pray that the angels protect his hands as our daughter is in his care. This is a very evasive 7 hour surgery at minimum and there is so much unknown, yet we are finding ways to let that unknown stay by the wayside and we are focusing on the endless possibilities to look forward to for our daughter. New skills, a new body less tight feeling, less pressure and continued smiles are what we are looking forward to.
Unfortunately we have not yet been able to get a room at the Helen Rossi house in the hospital like before. We are on the waiting list and hopefully a room will open up tomorrow.
So this evening we are home, which is ok. More time to prepare and relax. We had the most wonderful visitor come today, my Mom and the kids Grammy! She came here from PA to be with us this week and I especially are SO thankful! Everything is better when Grammy is around :-)
Sister has SO much to say!

We will be at the hospital shortly after 6am and they will take her back to the OR right at 8. We are nervous yet very ready for this surgery to be behind us. It is very hard knowing the pain your child will endure and extremely hard trying to explain that the end result hopefully will be for the better. We have spent some time today reflecting as a family and enjoying this time together. We are enjoying our girl, giving her extra snuggles and giggling right along side her. She sure is precious and we are so blessed to have her in our lives. She teaches us every single day life lessons and this isn't about the stuff you have or the places you go, its about the love in your heart and how you show that love unto others. No doubt she shares unending love with us.
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Wednesday, April 3, 2013

Absorbing.....

Tuesday, April, 2nd-
We started our late morning at the University for the day we have waited a few weeks for, Danielle's MRI and MRV Scans. She was a very happy girl especially considering she had, had nothing to eat or drink since the night before. She is such a trooper. I had her covered pretty good trying to keep as many hospital germs away as possible during our wait.
The Anesthesiologist came out and spoke with me just before Noon and explained their game plan. Shortly after Noon they took us back. I was a little upset as I think the Resident tricked me a little bit. I carried her in the room and he asked me to lay her on the cart so he could hook the leads up to her. Literally a minute after I laid her down while she was fussing and squeezing the heck out of my hands, he put the mask on her and she was out. I was mad, mostly because this is something that Daddy usually does and not something I am comfortable witnessing, but also because I had no warning on what he was about to do. I knew she was in good hands, but them drifting her off to sleep just went quicker than I imagined.
I headed for the waiting room and opened my book. 2 hours later the Anesthesiologist came out and allowed me to escort them up 2 floors to 1st state post anesthesia recovery, but once we arrived I had to wait outside the doors while they made sure she was stable and began to wake her up. Something about sitting outside these doors made me a little uneasy, yet it was not my first rodeo so I think this is when my internal panic set in and I'm not sure why.


I got to see her about 20 minutes later. She opened her eyes when I said her name, it melted my heart. I cuddled her for 30ish minutes then we were moved to second stage recovery. The Neurosurgery Resident on call came up and reset her shunt setting and hungry girl finally took a few ounces of her bottle and about 430 we were discharged. It was a looooong day, but went pretty good. I left there with no idea of what those scans looked like, which I knew this is how it would be; but it was a lot harder than I anticipated to not know anything for 24 hours.
What I didn't know at that time was that her Neurosurgeon, by the way have I mentioned how absolutely AMAZING he is.......anyway, he was watching her scans live, as they were happening off and on to make sure it was nothing emergent and that it was going as he expected. Seriously amazing, he is incredible and we are SOOOO blessed.

Wednesday, April, 3rd-
Today, we headed back to the University to meet with our Neurosurgeon for the results. And I was nervous. I was way more nervous than I have ever been before and I have no idea why other than the obvious, I only wanted to hear positive results. It was a very unsettling feeling. I am EXTREMELY thankful for my Aunt Ellie, she is my rock and such an incredible support system and always has been. She works at the U and was more than willing to attend today's appointment with me as another set of ears and I am so happy she was there.
We arrived and first met with the Resident. This is the same MD Resident that was in the OR for her first surgery, took her stitches out and saw us in the ER, so we are getting more comfortable with him. Our doctor does not have us see Residents except for this time managing her incisions post surgery before we actually see our doctor. Danielle had a stitch in her top incision that was poking thru, I brought this to his attention so he took care of it and cut it out. She was more mad at the sound of him opening the packages of iodine and gauze pads then she was him cutting the stitch out, silly girl.
He also verified her current shunt setting and checked it with the gauge so we knew 100% that it was ok and on the correct setting before her next surgery.
Our Neurosurgeon came in shortly after. He stood in the door and said her scans went well, he did not see anything that he did not expect to see. Yet she has far more fluid in the base of her brain in the 4th ventricle than we initially thought and it must be gotten rid of. I agreed.
He then sat down and explained more to us and showed us the scans. That is when he explained that while the scans were happening he was watching off and on to make sure it was going how he wanted. That right there says a lot about this doctor.
The MRI showed us the fluid filled ventricle from many different views. He then pulled up the MRV. Basically the MRV scans look similar to the MRI scans yet they show every single vein in her brain. He was able to see her main artery that goes from the front of your head all the way over the top of your brain and down to the back of your neck by your spinal chord.
Here are a few pictures of the artery I am speaking of. This picture is not Danielle:
Because of where the veins are located in Danielle, the only way to get to the 4th ventricle to do this surgery is to go under this main artery. Yes, I said under. He will go under this main artery, in the base of her head near her spinal chord to get to the 4th ventricle to drain the fluid. He even mentioned that he may need to place a tube for a short time in case he needs to go back in and drain more. We are uncertain at this point if this fluid is accumulating or not. We initially did not think it was, now we are uncertain.
This. Is. Serious.
This will be a 7 hour surgery, if all goes perfect, otherwise it could very well take longer. It will take 2 hours alone just to get her set up for surgery once in the operating room. This mama is nervous. I am totally trusting of this Neurosurgeon and he seemed very confident today. As he told me this is serious and someone needs to have broad shoulders to handle it and he pointed to himself and said he does.
After surgery there are a lot of unknowns. There are risks, a lot of them. Pretty similar to the same risks he took before but on a higher level. Because he is unsure of what type of scar tissue he will see from her previous surgeries, that may change things once he opens her up. He may need to move a couple smaller veins, he mentioned that he does not want to place a shunt, that we will not know until he is in there. Infection is a huge risk as well as Menengitis. There are far more risks to scary to even think about at this point. We know she is in good hands and that is all that matters.
She will be in the PICU for at least a week, could be longer depending on how surgery goes. The back of the brain where he will be working in controls everything on her. Heart, Respiratory, Swallowing, Speech, Fine Motor....everything. We pray this helps every single one of those functions, he had to tell me it could also inhibit them. We pray for the best.

I cannot thank my Aunt enough for being there for me today. It felt so good to be able to look over at her for a comforting person soaking this in with me. Thank you Ellie.
So what now....we prepare. There virtually isn't anything to prepare that is different, other than to keep our girl healthy, continue to pump her up on her vitamins and give her lots of lovin' that she more than deserves. It is the worst feeling as a mother knowing that your child is about to go thru something that I can't even explain to her. Yet, it is a bittersweet feeling knowing that this is for her future, and she is in the hands of the best.
I'm nervous. My nerves are shot. We will get thru. She will come thru and be able to speak her story one day. She will be able to thank her doctor one day with her own words. We hope, and pray and hold on to our optimism that this, is for the very best. Only the best for our daughter.
April 15th, will be the day Danielle's life will begin, in the most positive ways ever. We are dreaming of this already.~