Friday, October 28, 2011

{Home Sweet Home}

Angela-7

Yesterday We were finally given to go ahead to come home and begin to heal!  Angela is doing so much better since leaving the hospital -- maybe not so much physically but emotionally she is back to her happy little self.  Home is amazing -- it's amazing how when you are surrounded by love and comfort and when the threat of people constantly poking and prodding in taken away, how much healing can occur.

Angela-6

Angela came home with a central line and is on TPN for all of her calories.  We are trying to push feeds thought her j-tube into her small bowel but we are going to take it very slow, as to not make her belly angry.  We will keep pushing her rate higher and higher until we are at goal and then we can get that ugly line out of her chest!

Angela-5

Angela-4

This hospital stay was so difficult -- but we got through it and now that I've slept in my bed and had a nice shower I can say that I've once again have gained my perspective back.  Caring for a medically complex child can be so difficult, but I must say that there is so much beauty that can be found in it.  The ability to serve Angela on this intense level is very special.  I fully understand that not everyone could do it -- it blows my mind that God would choose Adam and I to meet her every need -- to give her love and a place in our family but also meet her needs medically.

Angela-8

Angela-3

We are ready to begin life again.  Angela and I hit the town today.  We headed back down to duPont for her six month Opthamology appointment, we did a little shopping, went to the grocery store and came back home for a meeting with the home infusion company.  Life is back to normal!

Angela-2

Angela rocked out her Opthamlogy appointment.  I'm not totally a fan of her Opthamologist, as she is the one who didn't want to give Angela glasses at her last appointment.  Her view is that patients who have cognitive issues and don't present as if they are even trying to look should not have glasses.  I totally disagree in a huge way.  Ok, so maybe some children will have no response to the increase in vision, but I'm sure there are a million who would.  Every child deserves the chance to see, no mater what there cognitive level. Angela was very attentive to the doctor,  waved hello and goodbye and even threw a little temper tantrum.  That's my girl.  Rest assured that Angela will get her main eye care from the Low Vision Clinic at the Eye Institute, but I still want to keep her at duPont in case we ever need anything more from them.

Angela

Thanks again for supporting us through this little bump in the road.  We are home and as you can see by these photos she is on the way to healing.

Tuesday, October 25, 2011

{Surgery Day Thirteen}

_

Life is all about perspective.  I was thinking this today as I was laying next to Angela in her bed listening to her fuss, as her belly is still bothering her.  This stay has been so difficult for various reasons but in the end it will all be worth it.  Choosing to take a different perspective and see the outcome of our current chaos is a very beautiful thing.  Many people I'm sure ask why on earth we would want to so this again.  My answer to that is this: I'd do it again a million times for a million different kids.  A few weeks or months of our own personal hardship -- not having great coffee, no sleep and a cold shower is all worth the quality of life we are striving to give our children.

Again -- it's just all about perspective.

_-2

Today has been very quiet.  Almost too quiet.  Angela continues to be a bit fussy but not as bad as the past few days as we have lowered her feeding to only 10ml/hr just to keep her belly stimulated.  She did great on her first night of TPN and her labs look pretty good this morning.  Tonight she will go on full calorie TPN and we will wait and see how things need to be adjusted.  

_-3

I'm not sure what the plan is as far as going home.  I kinda got the sense that we will be going home on TPN and working on feeds and getting her off the IV in the next week or so.  Part of me is thrilled with that, as I just want to get the heck out of this place, and the other part of me who already knows the reality of what life on TPN is like is a bit more hesitant.  We can do it.  We will do it.  We will do whatever is best for our little girl.

Tonight Adam, Madison and my mom are coming for a visit.  Very happy to see my little bigger girl -- miss her so much and although face time on the iPhone is great, it certainly does not replace the real deal!

Monday, October 24, 2011

{Surgery Day Twelve}

Today was another stressful and eventful day!  Last night Angela once again did pretty well with her pedialyte through her j-tube - but again it's just not good enough. Today Angela went downstairs to have a PICC line placed so that we can give her nutrition intravenously and give her belly a break.

After about thirty minutes into the procedure the team came out and told me that they were unable to place the PICC due to Angela's poor vein access.  They decided that a central line would need to be placed.  This line is kinda the same as a PICC but the risks are much greater as the catheter in down deep near her heart.  

We have a long history with Central Lines -- I hate them.  Actually I have a love hate relationship with them.  They saved our little boys life and will do the same for Angela, but my view has been tainted by the too many to count infections.  But again Angela's underlying condition is very different, but I can't help but feel anxious for her.

So tonight she will start TPN and give her the much needed nutrition she needs and deserves. The plan is to keep running the pedialyte at 10ml/hr and then start to slowly switch over the half strength formula at the same low rate.   It's going to take time.  I'm not sure what the long term plan will be -- if we will stay here or will go home with the line.  The thought of doing TPN again at home kills me but of course we would love to go home and we would totally make it work.

Angela's GI issues are most likely stemming from a crazy autonomic issues she is having due to the surgery.  Her BP is through the roof, she is flushed and breaking out in stress rashes, her heart rate is all over the place and her bowel are just not receiving signals from her brain to move and process the food we are giving her.  Again, she will get better and clinically she is doing just fine.  It's just a waiting game for her body to calm down.

In other news, Angela and I went shopping in the gift shop today for some hair accessories.  That makes it all better right?  Angela's hair is way out of control and I'm going to work some magic in the morning to try to tame her afro.  Not only will she be pretty but we'll have something to do to break this horrible boredom!

Never lose hope.

Sunday, October 23, 2011

{Surgery Day Ten & Eleven}

_-3

I pretty much don't even know what happened yesterday so I'm just gonna skip it.  Well actually, I do remember last night and that's most likely because I actually got some sleep -- a very rare event.  Last night Angela ran pedialyte through her J-tube at 40ml/hr and did rather well!  She woke up a few times but I was able to just give her her Binky and she would go back to sleep.  This is great news and in my opinion it's great progress.

_-4

However, our little girl is still struggling.  She is down almost three pounds since her admission and three pounds on her little body is huge.  Her weight is down to 19lbs and when undressed she certainly makes me feel uneasy.  I think everyone feels the same way, and that's why we need to come up with a better plan.

We know her gut has not woken up from surgery just yet.  It is slowly making progress, but it's a little too slow for the doctors liking.  She is draining out her g-tube and is a nice dark green slime, which again confirms that she is just not where she needs to be.  Because of this we need to get her nutrition and the plan is to place a PICC line in the morning.

_-2

I have so many fears about going this route, so many fears that stem from Gavin's life involving the horrible central line and infections.  I know things are different and Angela is not sick like Gavin, but it's still scary for me to think about.  I'm trying to focus on nutrition.  I really think once Angela gets some nutrition her progress is going to speed up even more and we can get the heck out of this place.

_

Today at the hospital was the annual remembrance service - remembering all the children who have died, including our little boy.  Talk about bad timing.  We got through it, but it was difficult -- even more so when we are already emotionally and physically drained.  But as always it's nice to feel the pain even if it hurts very bad.  I just can't describe how special it is to hold a photo of Gavin up to Angela and tell her this is her big brother.  Wow.  It just takes my breath away.

Thanks for loving our family!

Friday, October 21, 2011

{Surgery Day Nine}

_-4

This morning things were looking very bleak.  Last night Angela was unable to tolerate feeds and also lost her last possible peripheral IV line.  The doc came in and said that she needed a PICC line and TPN to give her nutrition as she has not eaten in over a week.  After some discussion I asked if we could give it one last shot at the GJ tube placement and he agreed that it was worth a last shot.

_-2

We took Angela downstairs to international radiology where they tried to get the GJ in.  After about an hour flipping her all around in various positions he was able to break through her pylorus and get the J portion of the tube nicely into her jejunum!  Everyone in the room was so happy -- but not nearly as happy as Angela and her mommie!

So today we have begun to attempt feedings into the J.  We know her belly is still fast asleep and is not working right now.  So far her J is doing better but now we are having some pain and issues.  Currently we are at 30ml/hr of pedialyte and things are starting to back up.  We are giving her some time off and then we will go at it again.  Once she can get to 40ml/hr we will switch her over to half and half formula and pedialyte.  

_

Poor girl.  She is really struggling.  Her skinny bones, heart rate and floppiness show a little girl with no nutrition.  We really need this to work for her.  We all know it will eventually and I've been assured that this does happen after surgery for some kids, particularly those with neurological issues -- but it's still hard to watch.

_-3

Speech came by this afternoon and also reassured me that many kids need to relearn their swallow after the fundo, but that they have seen many success stories.  Unfortunately they can't really work with her until she is up to full feeds.  I'm hoping to at least connect with them before we leave since we do not currently have a feeding therapist at home. Once we are discharged will be be looking for a program to start, maybe at CHOP where we get her PT.

Thanks for praying us through this.  We are all doing just fine -- just very tired and ready to continue on with life.  Adam and Madison will stay the weekend here at the Ronald McDonald house until we go home.

Never Lose Hope.

Thursday, October 20, 2011

{Surgery: Day Seven & Eight}

I just didn't expect to be writing a day seven and eight post -- but it is what it is and we are trying to make the best of it.  Things here are just plain old frustrating -- we're not upset with anyone and I'm certainly not   upset with Angela but just simply frustrated that her little body is not allowing her to eat.  After not tolerating her g-tube feeds, which is the tube that goes right into her stomach we decided that she needed her GJ back.  After three separate attempts to place the tube we have had no luck and we are still without the needed J-tube, which would bypass the belly and go right into the intestine.  This is all due to her lack of motility in her belly. She has always had bad motility but due to various reason things have taken a huge turn for the more difficult.

Today Angela was officially switched over to the service Gavin was on.  Ugh so difficult, yet so needed for Angela.  The doc decided to try once again to push feeds though her G- tube.  So far tonight it's just not working.  She is wretching and when we vent her tube all the fluid just pours out -- her belly is just not working. 

We also are going to get with speech tomorrow to look at Angela decline in her swallow ability.  We feel she may need to have a swallow study to check to see if she is aspirating her saliva.  Difficulty swallowing is to be expected after this surgery but we just need to explore the issue so we can help her to get back on track faster.

After another six IV attempts last night the on-call anesthesiologist was able to place a line.  The line is barely hanging in there but we have been told that this line needs to remain as long as possible as there are not many other options that are not more drastic.

Not sure what it looks like for going home.  Angela needs to be able to tolerate some kind of feed.  I just know she is going to turn around soon.  She is feisty and wants to go home just as bad as I do.  Thanks so much for all your prayers and support!

Tuesday, October 18, 2011

{Surgery Day Five & Six}

_-2

Wow.  This hospital stay has been filled with so many ups and downs.  Yesterday was feeling like a rather down day.  Angela is not tolerating any feeds given by mouth or by g-tube.  The issues with the feeding by mouth is to be expected.  The surgery altered the way her swallow feels and if you add on inflammation in her esophagus as well as her floppy tone it really makes for a difficult obstacle for her to deal with.  I have all faith and hope that she will once again be eating by mouth.  It will come back better than ever but it's going to take time. So for now we need to come up with a plan.

Since the g-tube feeds are not working do to her poor motility and also the fact that she is still healing from major surgery, we are going back to the J-tube feeding.  This basically is just a longer tube that will bypass her belly.  This worked for her before and I know it will again.

_

There are a few other issues that we are learning about Angela that we need to address, which are things that just got missed until now -- her first stay in the hospital.  Right now Angela is being seen by the surgery service but tomorrow she will be transferred to the Diagnostic Referral Team, which are basically the team who takes care of the kids who are complex and need management of numerous specialists.  This is very hard for us as this is the team that took care of our sweet Gavin.  But Angela deserves the best care and we will do what she needs. 

Angela is having some blood pressure issues as well as some possible obstruction at night which is giving her destats in her O2 levels.  Some of this is just from surgery and will hopefully resolve -- but we still need just to make sure.  She is also having issues with choking on her saliva, but today she actually seems to be doing better handling her secretions.

Thanks so much for all the support you give us.  We are so lucky to have the massive support standing behind us.  It truly enables us to live this life.  In a few days we will be back to normal life - lovin' every moment of it!

Sunday, October 16, 2011

{Surgery Day Four}

Madison-4

Last night Angela had a very difficult time.  After she was not tolerating her g-tube feeding of slow drip formula we switched her over to pedialyte hoping that it would give her some relief.  Her gaging progressed into full blown vomiting and just made her one unhappy little girl.  They decided that her IV needed to placed back in.  Angela is a very difficult stick so after about 6 attempts and several different departments trying a line was placed.  

Madison-3

So at around 4 in the morning we all got to settled in, her vomiting calmed down and we got about 45 mins sleep. Nice.  Today has been a little better.  No feeds are running so her belly is much happier.   She continues to have difficulty swallowing and often will often choke are become  angry and frustrated.  She doesn't seem to be in much pain, which is a huge bonus.  All these issues are all very much to be expected. The little girl I kept telling everyone was so simple -- probably is a bit more complex than I view her.  I like to think positive.

Madison-2

This afternoon, Madison and I had some much needed time away from the hospital.  We went on a special date out to lunch and then rented a movie and headed back to the Ronald McDonald House to watch the movie, which really meant Mommie got to take a small nap and Madi clean my purse out of a bag of peach gummy rings.  

Madison-5

It was so nice to spend some one on one time with my big girl.  She is so amazing and I love spending time with her and hearing how she is coping and dealing.  Adam and I always strive to make sure she knows she is so stikin' important to us and her needs are just as important as Angela's.  So far so good.

Madison-6

When we got back I learned that poor Adam pulled Angela's g-tube out.  This is an apparent crisis to the surgical resident as we are now stopping all meds through the g-tube and heading down top x-ray to check placement -- even though she has stomach contents coming out into her drain -- but it's all good.  I'll pick and choose my battles.

Madison

So as I type, we are waiting to head downstairs to solve our apparent crisis.  Praying for sleep this evening. I'd be happy with at least one hour.

Saturday, October 15, 2011

{Surgery Day Three}

Angela-2

So about yesterday -- forget everything I said that was associated with the word easy.  Actually, that probably just my exhaustion setting in cause truth is Angela is still doing really well.  She has no pain and is her happy spunky and sassy self.  We are experiencing a few bumps but really she is doing just as we would expect.

Angela-3

I jumped the gun in thinking that this would be a stress free visit.  Not that I ever really believed that but as of yesterday morning things were looking pretty darn good. The issues that we are having now  surround her ability to tolerate her tube feedings.  Angela has two issues. One is motility, which causes her stomach to empty poorly and the other is her reflux.  The reflux was reason she had the nissen -- so that she would stop throwing up every time we fed her or even looked at her in the wrong way.  But the poor motility is still there.  Angela did so well on J-tube feeds, but after the nissen was placed the J was pulled and just the g remained.  Her belly just isn't handling the volume.  But there is an answer for that -- just go back to the J for supplemental feeding.  The only issues is that it's a weekend and getting things like that done are very difficult.  So we wait.

Angela

The other issue is that we tired to feed Angela today and she is having swallowing issues. To be honest I don't know what in the world she is doing.  It looks like she is vomiting but, obviously not from her belly, but rather it looks like she is holding it in her esophagus and then she wretches it up.  So sad to watch.

Angela-4

Truth is today has been difficult for many reasons.  The main one right now is that I'm just so tired.  I do not sleep here at all.  I know things really stink right now but I'm trying to keep focused on our end goal -- going home and helping Angela to have better quality of life.

For now we just take it second by second and try our best to stay sane.

Friday, October 14, 2011

{Surgery Day Two}

Angela-8Angela-7

Angela is doing amazing.  Thanks you all for your prayers for our family and our little girl -- they are obviously working as Angela is recovering faster than anyone thought she would.  This morning she got a bath and get into her wheelchair and we took a walk around the hospital.  This afternoon she took a nap and has been sitting in her Childrite chair playing with her iPad and other toys.  Even though she required lots of morphine last night, today she has gone without narcotics and we have just been giving her Tordol every 6 hours.  God sure did know exactly what we needed for this stay.

Angela

Angela-2

Yesterday I walked into this room with such heavy grief and sadness -- God knew that we needed this to be easy.  I realize life doesn’t always work that way -- trust me -- we have walked through seasons where it seemed like the black cloud would never lift. But not right now.  We are in a season of healing and restoration and I totally feel God’s handy work in orchestrating the details of this hospital stay.

Angela-3

After Gavin died and we begun to start the adoption process, in no way did we ever feel that we needed to replace Gavin.  We welcomed Angela into our family as a unique individual.  But as I’ve been sitting here spending lots of quality time with her I can’t but help feel my little boy through her.  And I think that’s ok.  Angela is my special gift on so many levels.  I look at her and don’t see Gavin but rather I see the result of his life and of God’s beautiful plan for our growing family.

Angela-5

Angela-4

After Gavin died God really used the analogy of winter and spring to walk me thought my grief. Winter being the deep pain and mourning -- where the ground is hard and cold.  But in that hard cold ground is life just waiting to come to the surface once the warmth of spring arrives.  We are fully in our season of spring -- and Angela’s life is part of that beautiful thing that grew from our season of harsh winter.

Angela-6

Not sure if that makes sense -- but it does to me and it give my mommie heart a beautiful peace and excitement for our future as a family -- for all of us, Adam, Madison, Angela, Myself and our new child waiting to be found.  

God is amazing.  Never doubt that what appears to be an unbearable season of pain and hardship could be the very season that God uses to bring healing and wholeness to you personally and to the world around you.

Thursday, October 13, 2011

{Surgery Day One}

Day 1-2

Today Angela was admitted to duPont after she had her Nissen Fundoplucation done. Angela had this surgery because she was vomiting almost anything that was put into her belly.  She has learned how to eat and enjoy food over this past year and we would love for Angela to have the chance to eat all her food by mouth without vomiting so she can grow and develop.  

Day 1

The surgeon came out and told us that everything went beautiful and actually was pretty easy.  Of course in the Owens' world easy is a bit of a foreign concept -- one that we certainly can get used to!  Originally Angela was supposed to go to the ICU after her surgery, but due to lack of beds and the fact that she is doing really great we were able to come right up to the floor.

Day 1-3

The downside to all this is we were placed on the very same unit that Gavin died on -- very difficult.  I kinda knew it was a possibility but didn't really think it would happen.  When I heard them mention that we were going to 3E my heart started to pound.  Once we got up here to the floor so many difficult memories started going through my mind -- seeing the equipment, the bed, the staff -- just so difficult. But I let myself feel it all, had a little cry and now I'm feeling much better and once again thankful to God and also to my little boy for giving me this amazing little girl to care for and to walk through this surgery with.

Thanks for your prayers! Hoping these next few days will be nice and quiet.  Pray Angela can come off her oxygen, keep her pain under control and that we can get her up and playing.

Wednesday, October 12, 2011

{Surgery Tomorrow}

Angela Grass-3

Tomorrow Angela will be admitted to A.I. duPont Hospital for Children for her Nissen Fundoplucation.  We have been anticipating this day for a while and in many ways I'm glad it's finally here and in other ways I'm dreading every second of it.

Angela Grass-5

This admission comes with so many different emotions.  First off -- it stinks for Angela.  A hospital stay for a three year old is a very scary thing, especially when they are not a frequent flyer.  Add in the fact that Angela is visually impaired and will most likely not be able to visually comprehend the new environment, and it sends chills down my spine.  I know she needs this surgery and it will greatly improve her quality of life, but this next week is going to be very difficult for us.

Angela Grass-4

Then there is the other emotional level for Adam, Madison and I.  The last time we were inpatient at duPont was when we last said good bye to Gavin.  Ugh.  Even though I've been back to the hospital more times than I can count since his death, this is a whole different ball game.  It's ok.  It will be nice to remember, but I'd be just plain silly to say it will not be painful and difficult on many levels.

Angela Grass-2

But I know we will get through just fine.  In fact, I kinda have this feeling that God will be speaking to my mommie heart on so many levels this coming week.  It was because of my little boy that I am now able to be this amazing little girl's mommie.  It's gonna be deep -- maybe a bit painful but gosh I know it's gonna be so stinkin beautiful.

Angela Grass-1

Please keep our little princess in your prayers.  Specifically pray for her mind and spirit.  She has come so far in her ability to feel safe in her world, to allow people to see the real Angela and not revert inward to find comfort.  Pray that God would protect her progress and make this a time of continued healing for her body.  We are hoping and believing that in a few weeks Angela will be able to eat by mouth with no discomfort or vomiting.  With her increased ability to eat orally will come amazing development -- and we are so excited for Angela.  She deserves this and I know she will cope and recover in typical Owens style!

Tuesday, October 11, 2011

{Growing a Family}

Can Do Park-2

I never once thought that in order to grow my family I would need to be trained and educated before we welcome our child into this world.  Obviously this kind of family, we so desperately want requires us to do just this -- and that's what we have been doing for the past week.  So much training and so much education, my brain is full and my heart is ever more eager to find and bring our new little one home. On a side note -- just imagine if every parent to be were required to fully educate themselves before the birth of a biological child -- gosh, this would would be a different place.

Can Do Park-1

Last week we attended a traumatic and acquired brain injury conference in Philadelphia.  Besides the fact that is was sponsored by a lawyer wanting to help families pursue legal action, and this obviously does not apply to us -- there were still some really good presentations such as a look at neuropsychological testing and an introduction to ABM therapy.  We were very intrigued by the ABM, so if anyone has a story to share please do so in the comment section.

Can Do Park-3

Later that week Adam I were re certified in infant and adult CPR and then the following day we attended an all day conference on the effects of violence and trauma on the developing brain and then attend the break out session on fetal alcohol syndrome where a birth mother to three alcohol exposed children spoke.  Wow, talk about God's amazing grace -- it was very powerful.

Can Do Park-5

My brain hurts just thinking about  all the gosh darn learning.

Can Do Park-4

But it's all interesting and of course it's all more than worth it.  I would sit in a class for years if it meant we could bring our child home to join our family.  The search continues on for our little boy or girl.  We have had a few potential matches but nothing so far has resulted in an interview.  We have been a little late on the children that we were interested in.  We are looking at a little boy in New Jersey but we haven't heard if they are wanting to bring us in for an interview.  

Can Do Park-6

It sounds so Cliche to say we are just trusting God to bring our little one home -- but it's totally true.  Adoption is nuts.  Adopting from the US social services system is a very difficult process.  If someone tries to do it without the peace that comes from letting go of ones dreams and allowing God to take over and take the lead, it can be a long journey filled with lots anxiety and stress. We just can't do it that way.  We are trusting that Owens number six is already being prepared to join our family and we in the same way are being prepared to bring him or her home.  No need to stress, nothing we do will make it happen faster.  

Easier said than done -- but we are trying.

Can Do Park-7

For now we just dream, hope and pray.  It's crazy how a mother can love a child so deeply, even before the child knows he or she is loved by her.