Sunday, March 31, 2013

Time will tell.....

Miss Danielle has been doing pretty good the past week or so. She came down with a nasty cold after she got her stitches out and after about 5 days of treatments she seemed to be doing good. I think the antibiotic she was put on for her incision infection probably assisted a little bit also.
We went back to the U for follow-up a week ago last Friday. Her and I went down in the morning and she was a happy little girl. Sure enough we got there and just on our trip down and when we got checked in she spiked a 100.7 fever. Where in the world it came from I have NO idea. UGH. So to be on the safe side, even tho her incision looked good, they ordered labs and a chest x-ray and a urine test. This made for a long morning and what was to be a painless checkup for our girl was no longer..... she had ouchies :( They also started her on a new antibiotic which was some nasty stuff. Even flavored the antibiotic was extremely bitter. We started that on Friday and waited the results of her lab work. But she was a trooper, fever and all and still a smile on her sweet little face.

Monday her labs came back ok. One of her inflammation markers was high, but we knew that was from her incisions. Also over the weekend, her bottom incision which we noticed was a little bumpy looking, it appeared a stitch from one of the underneath layers was poking thru. So when I was on the phone with the PA on Monday I casually asked her what we should do if we notice a stitch poke thru. Her response shocked me, she gave me the ok to pull it out with clean tweezers, NO WAY, I opted for cleaning the area and leaving it be. Those stitches may do that because they take 3-4 MONTHS to dissolve, I was told! I could not believe it, 3-4  months! Wowzers! So that answered my next question, if she will have a new incision or if they will use one of the current ones, nope, new incision it will be.
Later last week we also got the results of her UA and she has a bit of a Urinary Tract infection which she has never had before. So we stopped antibiotic #2 and switched to another antibiotic to clear that. Thank goodness for Probiotics that she takes daily to keep that good bacteria in her body. We really dislike her being on these antibiotics but she must be clear for surgery so that is necessary.

This week coming up is a big week. With her scans and also meeting with her Neurosurgeon to hear his plan for her upcoming surgery, it was necessary this weekend to take some time to just enjoy these kids. Danielle's big angel brother Dalton would have been 8 years old on Saturday, so we decided to get out and have a day planned by Dylan. We headed to Build A Bear to make 'bears' in Celebrations of Dalton's day. Danielle was extremely happy to be out of the house. She squealed with delight in the car on the way to IC and loved her stroller ride. Out side of a few doctor appointments this was her 4th trip out of the house since February. It was a very nice day celebrating and remembering our first born son.

 She absolutely loved getting to stuff her bunny and warming its heart!

 Meet Spiderman Cheetah, Pretty Bunny and Angel Dalton Bear!
 Pretty Bunny
Today for Easter we donned our Easter best and went to 830 am mass at All Saints and followed it up with Easter Brunch at Lava. It was a very nice day just the 4 of us and we are now home enjoying this afternoon together. It was a bit nerve wrecking taking Danielle out the past two days but they were special days and she was so deserving. It was important for her to feel very much a part of our family and not to seclude her by keeping her home if possible, yet keeping her in her stroller and seat away from as many germs as possible. She looked so beautiful in her Easter dress and she sang and sang her little heart out at church today. She was such a little angel today.

Time will tell what this week will bring. I am praying for a smooth week with good scan results and a good pre-surgery appointment with her Neurosurgeon. We are optimistic that this week will bring good scans and a good plan from her doctor.
Something to look forward to this week is on Wednesday we are able to meet at our home, Danielle's new Kindergarten teacher next year! She is coming out with Danielle's current pre-school teacher for a home visit. We are very excited to meet her and to hear all of the exciting things that next school year will bring.
She has continued having PT, Speech as well as Pre-School time in our home the past couple weeks and she is LOVING it. Not only is she loving the extra attention she is also loving the work out her little body is getting. Poor thing her body has been out of sorts since she has been out of her regular therapy routine. Having these therapists come to our home has been such a gift and we are very pleased with how things are going.
If you have a free minute or two and can pass on a good thought or prayer on Tuesday and Wednesday this week for Danielle that would be much appreciated.
Happy Easter all! I hope you enjoyed your day with your family as much as we did!~

Monday, March 18, 2013


I feel like the word that best describes our world right now is CAUTIOUS. We are cautious about every move we make with Danielle and our days revolve around what is best for her, being cautious about what specific care is involved in her days.
Last week she began having therapy in our home. Grant Wood came out and started working with her. The very best part of this is that it is her actual therapists that she works with at school. In addition to her Bowman Woods therapists, we also have the Speech Therapist from Springville who worked with Danielle for the previous couple of years in our home and really knows her well. 3 of the therapists came last week to reacquaint with her and see how she is doing now. To say she was excited is a bit of an understatement. I wasn't able to be here but Brad was and her nurse was and they both agreed she was extremely thrilled to have familiar visitors who did nothing but play with her!
Colleen the PT brought a couple pieces of equipment which we can use here at home. A wedge, which is great for her during tummy time, working on stretching out her tight little pelvis and pushing up with her arms and working on those arm muscles and head control. The tumble form chair is great because it can be used for feeding etc and she loves it. She will have therapy 2 days a week, plus her preschool teacher will start tomorrow, one day per week, so that will be really fun for her also!

We are still extremely cautious about Danielle's incisions, how they look, how much time she is on her back, etc and we always make sure she has something extra cushy under her head. Whether it is her boppy she is laying on, or her nest, or blanket, we are extremely cautious about protecting her as much as possible. I am pretty sure that if I could put her in a bubble right now I probably would!! Well that being said; you can imagine how extremely cautious we ask her nursing staff to be as well. So when I came home from a very hectic dayon Thursday, and saw that Danielle's top incision appeared to be very red and have a puss pocket under it, I freaked out. There are no other words to describe how extremely panicked I was and very frustrated. I noticed this no more than 10 minutes after our secondary nurse left for the day and I was livid. I immediately called the company and left a message with our case manager. Right after I was on the phone with Neurosurgery asking what I should do. The doctor that was on call happened to be the doc that took her stitches out and he was also in the OR for Danielle's surgery with her primary Neurosurgeon, so he knows Danielle. He told me to bring her in to the University Emergency Room immediately.

Brad wasn't home yet and of course Dylan was in the bath tub. I immediately got on the phone and Brad asked our sister in law to come over so I could leave. I am thankful for my brother in law and sister in law for living down the street, she literally came to my rescue. I hauled Danielle to the U, ER, and we waited and waited. The placed was PACKED. It was 9pm before we even saw the ER doc. I was mad. Danielle is priority but so are people who come via ambulance and life lite plus others with serious conditions. But she had a really good size lump under her incision and it was flaming red and you could see the puss pocket so based on the conversation I had on the phone with the Neurosurgeon, I was pretty irritated the ER did not act faster. And we couldn't see the Neurosurgeon until we saw the ER doc first.

We finally saw the ER doc and he immediately paged Neurosurgery. The same doc I spoke to on the phone came up just over an hour later and said indeed it was an infection. They would not drain it, rather give her an antibiotic for 10 days and recheck in a week. The infection was in one of the layers of stitches underneath her skin. 130 AM Friday we finally arrived home. Poor Danielle was fussy, tired and hungry and in pain. She has such a high pain tolerance that her being a little fussy told me she was pretty uncomfortable. We sat in the ER for 6 hours and in a room holding her she even tossed and turned. Poor lil peanut. She managed a few tiny smiles but nothing like normal.
So after picking up her prescription we arrived home and zonked out. Friday we snuggled in the morning and in the afternoon the Director of Care for her nursing company came out and talked about the incident and took some pictures. This was out of character for her company and I did agree, but again we are overly cautious and this was inexcusable and can NOT ever happen again. After all, that is why we have in home nursing care.
The weekend was spent with extra Daddy snuggles. Her incision did end up breaking open on Friday evening so the puss began to drain. It was very tender so Neurosurgery said that if it breaks open that we should cover it immediately with a bandaid or bandage. We opted for the bandaid because it is smaller and won't pull as much hair taking it off.
This is her absolute favorite place to play. She scoots there on her back every time we put her on her blanket. And she manages to do it with a toy right within reach also. She's a smart cookie and a manipulator too :-)
There is nothing worse as a mother than feeling like you can't protect your child every minute of the day. That is why we try so hard to instill our trust in the best caregivers around to fill in while we are away working for our family. It is a shame we had the experience we did with one of our providers, although it made us question for a bit, we will no longer have that nurse and it was not our primary nurse anyway. So our daughter is still in the best of hands, and now even moreso she is protected. We are extra cautious... for our girl is the most valuable piece of us and always will be.

Sunday, March 10, 2013

One step at a time....

Danielle has settled in at home nicely. With a full week and a half of in-home care behind us we continue to take each day as it comes. Our girl continues to have big smiles on her face almost every single day. Even in moments where she is most sensitive, we see the smiles right around the corner!
Last Wednesday Danielle, I and our nurse trekked to the U to see Neurosurgery and to have Danielle's stitches removed. It was the first time in almost 2 months that the kids were in the car together, mind you, this use to be routine every single day. It was at the moment that we pulled out of the garage and I heard Danielle's squeals in the backseat, how much I realized that she was missing this. Sitting next to her big brother, glancing over at him as she wishes, and giggling at his never ending stories and tall tales. She was delighted to be out of the house. I hadn't even noticed at home until now that she must have had a dose of cabin fever and she was thrilled to be out for a ride!

We were set to see our ARNP whom we see every visit, yet this time was a little different. We actually saw our Neurosurgeons fellow that was in the OR with him for her surgery. He was the one who took her stitches out. She did not cry one bit for the stitches removal, she did cry a little when he was taking her bandage off. It was crazy to see how fast her hair had grown underneath that bandage that I had just replaced some 5 days before. It broke my heart to hear her cry. It was great tho to see how well her incisions looked.

The stitches were in there and he had to pull quite a bit to get them out, but all went great. He covered them right back up and we were on our way home!
Two nights later she was up ALL NIGHT LONG. Oh boy, when you are use to a kiddo sleeping all night long then she's up for 3 nights in a row that makes for pooped out parents! Turns out she has quite a bit of a cold, UGH. She hasn't been out of the house since surgery, we are out for 2 hours and two days later a cold. Makes this mama want to SCREAM! So we are nursing her back to health, pumping her up with her vitamin regimen still and praying for these germs to EXIT! Her vitamin regimen looks like this:
800 IU Vitamin D Daily
1 ML Liquid multivitamin
1/3 tablet of Protandim
Omega 3 liquid
Probiotic -Culturell

Today we decided to remove her bandages. The doc cleared us to take them off 1 day after he took the stitches out. Yet our discharge instructions said to leave the bandage on for 5-7 days after the stitches were taken out, so we decided to compromise. She really loves moving and scooting all over the floor, so my fear was if that incision wasn't secure together very well, well I didn't want to wonder. So today Daddy got out of the house for awhile and I tackled the bandage removal, OUCH!
We started with a bath, this is our improvise on bath time when we couldn't get her hair wet, and I used it today because the sponge helps keep this wiggle worm in place. Sister thinks the tub is a pool most bath days!
To say she loved getting her hair scrubbed is a bit of an understatement. She laid there and  giggled and talked back to me while I was washing her hair, she was one happy girl!
She was however not so happy after bath when I began removing the bandages. She cried and cried and cried. It broke my heart! I was crazy tackling this on my own, but once I started I couldn't stop. We had lots of adhesive remover from the hospital, but it didn't matter it still was really ouchy. Her head must be way more tender than she lets on to us.
I got the top one off and had to take a little break to let her calm down. Then tackled the bottom one. She still has adhesive sticky at parts on her head, but I tried to clean it off best I could with the adhesive remover pads and alcohol wipes. The incisions tho look pretty good.

 She has some breakdown behind her ear and on her neck. I contacted our RN Case Manager today, who already planned on coming out tomorrow to evaluate her incisions, and I wanted to notify her of what i was seeing. As these few hours have gone by we have tried to keep her off her back as much as possible to let it air out, and the spots have begun to dry up which is great to see. I am really glad we didn't take the bandages off before now, I would not have been comfortable at all.

So this afternoon was spent napping and giving extra snuggles. There just isn't enough time on the weekend to get in all of the snuggles we want to give, but we sneak in all we can.
This week we start having therapy in our home 3 days a week and her pre-school teacher will come beginning next week. I know Danielle will be very happy to have this routine again. Her body is really missing therapy and she will be so happy to get all stretched out! We stretch her daily, but nobody stretches her better than the professionals!
So this week begins one step toward our bringing back our little girls educational routine back. We know she is really missing her school friends. We aren't sure when she will be back in the classroom this year, but we are so thankful that we have the support from the school district to bring school to her!
 There's nothing better on a Sunday afternoon to see two smiles from our little Miracles!

Sunday, March 3, 2013

Tid Bits....& New Date...

Here is a little bit of info about Danielle and her Brain Hemorrhage at Birth resulting from her Prematurity. The developing brain of a preterm infant is also vulnerable to injury. There are several types of problems that affect the preemies brain.

* The surface of the brain develops quickly between weeks 24 and 40, and so there is a big difference between the brain of a preemie born less than 28 weeks gestation and a baby born later than 32 weeks. {Danielle was born at 24 weeks}
* The germinal matrix is near the ventricles and makes new neurons and cells that support them, it is also called the subependymal region. If you have ever seen a picture of a brain, you will see it has many wrinkles or grooves, that look like folds, these folds or wrinkles increase the surface area of the brain and help it function more powerfully and efficiently. In other words, the folds are very important for learning and intelligence. The process of folding occurs between 24 and 40 weeks gestation so a premature baby born around 24 weeks gestation will have a brain that will look smooth on the surface, whereas a baby born at term would have a brain with grooves and folds. Because a preterm infant is born during a time the brain is undergoing important developmental changes, it is vulnerable to injury. {Danielle had a brain injury at birth. A grade III on the right and a grade IV Brain Hemorrhage on the left.}
*A brain hemorrhage, or bleeding within a premature infant's brain are of 2 types, they are intraventricular and germinal matrix haemorrhage's. The preterm infant has a number of physiological features that make it vulnerable to brain injury. Blood vessels in the germinal matrix carry a large amount of blood and are very fragile. These fragile vessels in the inner part of a preemies brain are vulnerable to changes in blood flow. The events leading up to and following preterm birth can affect the blood flow causing the vessels to break and bleed. If these vessels rupture, the bleeding occurs in or near the ventricles, the blood initially accumulates in the germinal matrix and may spill into the neighbouring ventricle.
*Another factor that can place a baby at risk for IVH is related to the heart. The persistence of patent ductus arteriosus (PDA) can alter brain blood flow and circulation considerably. Patent ductus arteriosus can cause increased stress on an already immature respiratory system and can lead to a relative reduction in brain blood flow. If the ductus in then closed, either naturally, pharmacologically, or surgically after several days, there can be an increase in cerebral blood flow. These changes or fluctuations in blood flow can result in bleeding within the germinal matrix. {Danielle had a PDA at birth that was closed pharmacologically (with medication).}
*Grade 3 IVH refers to extension of blood into the ventricular system, filling more than 50% and usually accompanied by ventricular dilatation. Grade 3.
*Grade 4 IVH is not actually intraventricular hemorrhage at all, but rather refers to the periventricular hemorrhagic venous infarction that occurs with obstruction of blood flow through the periventricular terminal vein. This means a hemorrhage outside the ventricles, in the white matter of the brain. {Danielle is still very venous at the base of the 4th ventricle, which should have gone away by now.}
*Preemies less than 1,000 g (2lbs) or less than 28 weeks - 50-60% chance of developing IVH. 10% have a chance of developing a grade 4.
*Hydrocephalus is called 'water on the brain' which means there is an abnormal amount of cerebrospinal fluid in the brain and brain ventricles. Following and intraventricular haemorrhage the blood clots can block the drainage system of the brain or scar the brain membranes. This can result in the increased pressure inside the skull and enlargement of the head. {Danielle has hydrocephalus and her first shunt on the right was placed on the right side to help correct this.}
****New Surgery Date****
Danielle's surgery was moved up one day to April 15th. I spoke to the U on Friday and the surgery is described as Posterior Fossa Craniotomy.
The goal of the surgery is to remove the pressure on the cerebellum and brain stem and in the 4th ventricle going in the lower part of the skull in an area known as the posterior fossa.

Danielle will have a special MRV (Magnetic resonance venography) scan two weeks prior to surgery that will help him see where she is venous. It is an MRI study of the blood vessels in her head. Which will be used to assess the abnormalities in the blood vessels. We will know a lot more after this scan and it will help her Neurosurgeon finalize his plans for surgery, so we know full well this scan could change things for her surgery as well.
The past week has been pretty good. Danielle has not shown that she is in any amount of pain. A couple days she was a little quiet and didn't want to eat much but we do not think that was a result of pain. This past Thursday we began in home care again and she seems to be adjusting well.
We have seen smiles most days and that is a sign that she seems to be doing and feeling well.

Occasionally we have seen the pouty face. Mostly when she wants to be held, or is startled...this one we actually captured when she was asleep.
We still continue to learn life lessons from her daily. She is by far the strongest most courageous little girl I know. What she has been thru and continues to battle on a daily basis, she still manages to put a big smile on her face and trudge thru.
We give extra hugs and kisses right now, she so needs and deserves them!