Sunday, May 19, 2013


We are finally home and our family is back together. Home has never ever felt so good. Although it feels good it has been rough. Keeping our girl comfortable is a constant battle. So nights are restless and sleepless and days are long. So, more updates soon. As for now I think it may be time for a nap....the house work will wait a couple hours, right?!
Here is what the best part about being home has been...seeing these two reunited!

Wednesday, May 15, 2013

Slow & Steady. .

This is no race were on and we are being reminded of that hourly.
Monday night was better. Danielle got some decent sleep. They ended up putting a feeding tube in her nose (ng) and running continuous feeds over night.
The night started off a bit hairy as I tried to feed her a bottle and she was clenching really bad. I could not even get anything in her mouth. Neurosurgery came up to reprogram her shunts from her MRI and I mentioned it to the Resident. I was really worried that something happened when she self extubated her vent tube. He suggested the picu team contact the anesthesia to see if anything mechanically happened. That never happened and I was frustrated. That night they started the feeds thru her ng. Continuous feeds all night an ounce and a half every hour. That Was a lot to start yet they wanted her to have a calorie burst.
Tuesday morning her neurosurgeon came in and gave me the results of her mri. He w as happy with what he saw. The 4th ventricle looked better. There is still a little fluid there that will drain over time. I had asked him if there was anything I should be watching for with her..his response, 'no, she is a new girl now she will show us who she is  we have no expectations of her.' That was just what I needed to hear  this morning I finally got my smile. I needed to see that in the worst way and upon singing the good morning song to her, well this is what I got in return :-)
The doc cleared us to go to the peds floor and I felt ok about that. She did tho have to have quite a bit more oxygen the night before and I was thinking she needed another breathing treatment. Who knew it would take begging for that to happen. Well she had pretty high sodium levels and this can also cause wet lung the doc said. So upon bringing this to her attention a chest xray and breathing treatment were ordered  thankfully because she really needed it! 

Later on that afternoon we moved to the peds floor. Strangely enough we are right next door to the room we were in 3 weeks ago! Danielle was happy to go for a little ride!

We got settled last night and her care is from the General Peds team now and Neurosurgery second. we have the same resident as a few weeks ago which is nice. Well we got settled and i tried to feed her and it didn't work. They had given so much thru her ng for the previous night that she was not hungry. She got tucked in bed and the throwing up began. She threw up 4 times in a matter of 2 hours. And lots of mucous. So this meant of course changing everything AND her collar! That was the worst and she dis not like it  it was a rough night trying to get her comfortable and resting. About 4am i held her until this morning. Her oxygen levels also had to be turned up to 3 liters over night. Poor thing, another rough night for both of us.

This mornings labs showed her sodium high again and creatnine also. They asked me to bottle feed her today as much as possible. She did great. She turned around today. Happy and lots of smiles chattering at me and she ate her bottles and spoon  feeds as well. Her one iv went bad so they took it out.then her other iv went bad and they took it out  they weaned her oxygen down and she did so good that it is off and tonight her monitors are off too.
We had a little visitor today from a furry friend! Loody the therapy dog was visiting kids today and he came in and sat on my lap with Danielle for about 15 minutes while a team doing a Documentary took lots of pictures. It was so incredibly sweet and she was so happy. I even shed a few tears....such a sap i am!

Tonight we are still here but we think so close to going home this mommy can taste I

it! She's extra feisty today and moving all around her bed. Tonight well she's still awake so I think snuggling all night is on our agenda. Praying for good morning labs and whatever else they want. in the very near future..crossing our fingers!

Monday, May 13, 2013

Surgery.....and then the recovery..

Our girl is doing ok today. We made it thru the surgery which we thought was the toughest part, the doc was SO correct when he asked us to worry about her recovery more than him doing the procedure itself. He told us that for a very good reason....
Surgery Day
Friday morning Danielle was in a really good mood. Despite not sleeping good the night before and being very nervous at her pre-op appts, so nervous in fact that she broke out in hives :( it was so sad. I wasn't sure what to expect the morning of surgery, but to our surprise she was happy, talkative, she talked the whole car ride to IC! She was full of her precious smiles and really helped us to feel like we were most definitely making the right decision to proceed with this surgery.

 The pre-surgery checks and consents went well, we were just very anxious to have it all behind us. They did not allow Brad to take her back to the OR this time. They requested that he not do that, more for a time purpose than anything. It bothered me a little bit that they didn't let him do that, yet I know it was a little relief for him. Watching your child be put under anesthesia before a 7 hour surgery is gut wrenching. It wasn't until anesthesia took her away that it really sunk in and tears flowed. This was another surgery, another day letting our heart beat out of our chest, and another day to put our daughters life in the hands of someone else, thankfully we are totally trusting of that man, he is amazing.
We took a seat in the day of surgery waiting area. About an hour and a half after they had her in there Brad went down to the hospital gift shop to get a coffee and paper. It just so happened that he ran into our Neurosurgeon walking into the hospital at that time. Brad and him acknowledged each other and he quickly called me and said, 'um isn't he supposed to be in the OR with our daughter?' Then on his way back up to sit with me he rode in the elevator with the Chief Resident, who was one of the ones we spoke with before they took Danielle back. Again, got Daddy's mind a racing. The fact of the matter is, that even during a 7 hour surgery, the surgeon isn't in the OR the entire time. Kinda freaky to think about etc, and since we were waiting for such a long evasive procedure this day, and Brad happened to run into these key people at the most in opportune times, well it didn't help our nerves any let's just say that!
They started the surgery after the 2 hour prep, we got the call around 915am that they had started. So it was to be approx. 5 hours from this point. Well just before noon we got the call they had closed her up and the doc was coming up. We were shocked, and extremely nervous at this point. Since the time was so much less we were worried there were complications.
The doc came in and relayed the great news. All went perfect. He got in near the 4th ventricle and just before he got to the blockage site he encountered a lot more blood vessels and veins than showed up on that special MRV scan that we did a few weeks ago. But thankfully he had those scans in the OR to look at and could go off of what wasn't on the scans and what he was seeing live and he worked thru. He got to the 4th ventricle and saw right away where scar tissue had formed and blocked the duct. He said in fact this was resulting from her initial brain hemorrhage at birth, this had been blocked for the past 4 years. He then moved up a little more and saw a second area that was blocked as well. As soon as he cleared both spots the pocket of fluid rushed out immediately. He said at that point her heart rate did a big drop from like 140 to 50 but she recovered right away on her own. So this surgery, the ducts he opened up he opened really wide. He did not leave any tubing in, or the button that he briefly mentioned he may. He opened the ducts wide and hopefully they will stay open and not scar over with scar tissue. He did explain that this was old, while the duct that caused the blockage from her surgery a few weeks ago was new.
Other than the drop in heart rate things went perfect. She could have very well lost a lot of blood, but she did not. He didn't see anything he didn't expect and now we are onto recovery. He said she was intibated and would be on the ventilator thru the weekend. She could have more pain meds this way and would be able to rest more and not work so hard about breathing on her own.
This time we got big smiles from the doc and big handshakes. He was finally so pleased with the result, exactly what we were looking for. The angels guided his hands and protected our daughter, all was grand. We have waited virtually 4 1/2 years for this fluid to be resolved, and after 3 attempts since February, it finally went without a hitch. We are SO incredible thankful. We feel like we owe the world to our amazing Neurosurgeon!
Because Danielle was going to be on the ventillator, she was able to avoid recovery and come right to the PICU. Brad and I came down and sat in her room and waited for her to arrive. She arrived about 15 minutes after we did and so did the whole team. The Neurosurgery Chief Resident, the Anesthesia Staff doc and Resident plus others from the PICU all accompanied her. She was well taken care of.

They brought her from the Operating Room in a hospital bed and then needed to move her to a crib. She is use to a crib at home and it is much more compact and comfy for her since that is what she is familiar with. So beings she is on the vent that took a whole lot of planning before moving. As you can see the nurses are a little bit like super-heros, they do anything for their patients! Even if that means climbing all over things to be as safe as possible when positioning! Because she was on her tummy for the entire surgery, it was crucial that they slowly moved her as her body was still getting use to a lot of changes in her brain, and an area of the brain that controls every move she makes.

The rest of the afternoon was spent monitoring her pain. When they brought her in she was still on propofal and they had to turn it off a few minutes later. It wore off quick and they got the morphine started. She was trying to cry and couldn't because of the vent. It brought back many of these NICU memories and broke our hearts :(
Day 1 Post-Op, Saturday, May 11th
Friday night Brad and I slept in her room. Him on the couch and I in the recliner right aside her bed. The nurses had began coming in pretty frequently around 11pm and suctioning. When kids are intibated they produce a crazy amount of mucous that affects the vent rate etc. Well she was doing well and needing very minimal support.....and some nurses are still suction crazy, I seriously mean that. That is what they do whenever there is an opportunity, instead of waiting for the desat, they suction constantly regardless. Well our nurse instead of letting Danielle rest was suctioning way too much. I would fall asleep and wake up to the noise of the vent going crazy from the nurse suctioning. Around 2am the nurse had just stepped out after suctioning yet again, and I hear what sounded like Danielle gagging. I hopped out of the recliner and looked and that's exactly what was happening. I ran into the hallway grabbed the nurse and said something is really wrong. She came running in with the RT. The RT said, 'shes extubated page the doc now!' By this time, like a minute later the RT had pulled the vent tube out, the room was filled with docs, nurses, the lights were on, the alarms sounding and I sat in the chair scared out of my mind. This seriously was NICU all over again. With that tube half in and half out it was blocking her airway and she was not breathing. They had to bag her until she was stable enough to put the nasal canula oxygen on. I was so angry. Shame on the nurse for compromising her! The doc pulled her out of the room and got her story. He then came in and asked everyone to leave and got my story. Trust me, this is not supposed to happen and if I wouldn't have noticed who knows what would have happened.
As soon as her tube came out they had to immediately turn off the IV pumps which had her pain meds and sedative going. Because she was now not intibated she could no longer have those strong pain meds, they needed her awake asap so she would concentrate on breathing on her own. It was horrible. Hearing her cry and gag on the mucous and choke and try and cough was heartbreaking. The rest of the night and all of Saturday were long. Minutes turned into hours of our girl being uncomfortable.
Saturday afternoon about 4pm, after trying several different things we finally were able to get things under control pain wise and she slept long and hard all night long. Exactly what she needed.
Sunday, May 12th
Danielle slept most of the morning. They began gradually weaning her morphine since she had been sleeping so sound. I was able to hold her for the first time today, the most wonderful mother's day gift ever. It had been far too long since I had snuggles with my girl. Dylan was really missing Danielle and we had decided to bring him up to see her and us. He has also been thru so much these past few months. He has really enjoyed spending time with family yet being away from his sissy is taking a tole on him. Brad headed to his parents to bring him back to spend the afternoon with us.
Daddy was able to snuggle his girl also and it was a great afternoon. The floor docs had kept saying they may move her to peds. So our Neurosurgeon stopped in for his daily check and I told him what was said, like last time this made him mad. He is the one to be ordering things for her and they needed to back off. She is no where near ready for the Peds floor and he agreed.

Dylan was such a sweet brother. Quietly laying on the couch and snuggling  up with Mom. He really missed routine and we were so happy to spend time with both kids today. It was needed.

Daddy and Dylan left after dinner and said their 'see ya later's ' for the week. It was Mommy on duty after that!
Monday, May 13th
Danielle was now on a PCA Morphine pump meaning she gets a dose whenever we press the button, which can be as frequent as every 15 minutes. She was still on oxygen at 2 liters and later in the night she needed to be turned up to 3 liters so they took a listen to her and heard a few small wheezes. She did get an Albeuterol nebulizer treatment and it helped right away. Her canula was able to go down to 2 liters and she started off the night ok.
During the night unless I heard her fuss it was challenging because she wasn't getting regular morphine for pain control. They thought because she was still so sleepy that the pain was minimal. Wrong. I would have to hear her cry and get up and push the button for her to get morphine, all while she was already in pain by the time I pushed the button and who knows how long it took for her to feel the relief from it.
Around 4am I woke to her crying and crying The button was being pushed to its max, every 15 minutes, so I suggested to the nurse that I would hold her and try and feed her again. I tried some apple juice but she would not open her mouth. Her jaw was clenched so tight, I tried to even pry her teeth apart with my finger while holding her and it wouldn't work. The Neurosurgery team came in shortly before 6am and I notified the Chief Resident of my concerns. I also suggested no oral meds by mouth because if she is getting oral meds that she doesn't like and won't open her mouth for them, then she is going to be confused by the bottle and not necessarily want to open for that either. She said she would order Tylenol via IV and a muscle relaxor and then....
Mehaney told me that her neck is probably really really sore. They had to actually move her neck muscles for the surgery. Eeek! So you can see from the pics that she has a collar on. The collar is to help keep her neck muscles in place and stable. Understandably her neck is going to be weak and very sore. After you see this, you will know why.....I got the first look of her incision today, and it brought me to tears.
  Yes, she did lose more hair. But she still has a tiny small pony there!
 Ouchy is an understatement. This hurts my heart. I don't know what we expected, but for some reason I wasn't expecting this. The good thing is that it looks perfect and is healing nicely. She also does not have any sutures above the skin, it is in tact with medical glue. She has many layers of stitches under the skin, but thankfully none on top. You can also get a good pic of her shunt from a few weeks ago and you can still see the little scab on the top left that she has from that surgery.
 Poor babe...
This morning after speaking with Neurosurgery and then the floor docs at rounds I was less than impressed with the floor docs wanting to rush her down to the Peds unit. I clearly voiced my opinion and stopped the floor resident in her tracks. This girl has had 3 brain surgeries in 2 1/2 months and her body is totally different after this last surgery, so why rush her off being comfortable after we finally get her comfortable again and rush her to Peds? Grr.
So Lonnie, the Neurosurgery PA came up this morning to do the dressing change and ask how I felt she was doing. I went thru everything with her and she totally understood.
This afternoon our Neurosurgeon came up and spoke with me as well. He came in and asked how I thought she was doing. Since they gave her the muscle relaxer this morning she has been sleeping soundly. His concern is she needs calories and with her not taking feeds yet they are going to have to do the NG feeding tube. He also ordered a MRI scan to show what is going on to make sure everything mechanically is ok. I asked him if there is anything that I really need to be watching for. He reminded me again that she is a new girl. That fluid that is no longer there had been there for 4 years and now her brain is functioning differently and needs to figure out this new change. We will expect nothing and she will show us the new her. That made me feel a lot better. I think she is doing well despite her pain being messed with because of the drugs taking off, weaning down and then putting back on. the other thing is that she was to originally have her vent until today, well since it came out over the weekend that changed things too. So she will show us who she is. He asked that I give her a bottle after the MRI scan and we will page them with how much she eats. She must have the calories he said. So here we go. Hoping for good scans and a full bottle of formula and some snuggles with Mom when she returns.
  Shes still got the IV in her foot...
  The Arterial line in her hand,
 which is directly in her artery and monitoring her blood pressure every second.
  And the other IV in  her left hand on top.
We have yet to have any smiles at all since before surgery on Friday. I have been singing to her whenever she's awake. Even singing her favorite good morning song etc and while she will verbally respond to me she has not even cracked a smile yet. You can see from this pic when shes awake she
is keeping an eye on Mom and my every move.
 I'm sorry baby girl we so badly want you to feel better.
We knew your recovery would be a challenge.
Just please show us a smile so we know that you know, that everything will be ok.
You are so brave, we are so proud of you and your amazing strength.  

Friday, May 10, 2013


Today our girl endured a very painful extensive surgery. She made it thru and is in intensive care recovering. It took all afternoon to get the pain under control and she is finally resting. She is intibated to help her rest. We are going to rest also now in her room. We have been unable to get a room at the Rossi house.
More surgery updates tomorrow morning. We know that it went well...god is good...and our girl is finally resting with this behind her. The surgery was a success and we hope it holds. She is still very critical for at least 48 hours. She amazes us. We can't wait to snuggle hold and give her kisses. A brave girl she sure is.

Thank you for the prayers they are being heard and we need them ♥♥♥