"We'll always take you back...
...you know your welcome here."
Yes, I do know that. I would just like to reserve that invitation for when its really needed.
That's how I feel about it. If it can be done here then lets get it done here. If it has to be done then ok. If it could be skipped and we could spare her going through it then lets skip it. That's our philosphy when it comes to Ash's health care and procedures.
Ash 's stoma(the hole or opening) around her mic-key button is a mess. It is painful. There is blood coming from the inside of the stomach. There is fresh and old blood showing up on the gauze dressing we place around it. The button no longer fits well(since swelling up as large as she did last week). She screams throughout the day, she pulls on it, she picks at it, she signs, "it hurts" over and over and over again. She has fluid pouring from it onto her clothing keeping her moist and damp at all hours of the day and night. Add to that the vomiting and it points to some type of problem.
After discussing Ash's status with her nutritionist from Omaha this morning she mentioned that she was going to pass that information along to the coordinators. I asked her to assure them that we were managing and didn't need to be called back there. She told me they would probably want to call and discuss it all with me. We both giggled knowing that the last thing we want to have to do is take Ash back out to Omaha(unless she really needs to be there of course).
I received my call a few minutes ago. Hence the title of this post. What they would like for us to do is schedule a scope and while were at it a biopsy. Ugh! I'm just guessing about the whole ulcer situation, but if her stomach or the sites where her bowel was attached to her stomach and her large intestine have developed ulcers then we need to know. The only way to know for sure is to go in and take a look around. Just in case its PTLD. That's what she said. Not that she thinks it is, but the biopsy will rule that out. Ok, I'm going to make some calls and set it up. I asked what we would do if she does have ulcers, you know the normal kind that aren't cancerous, and she talked about giving a med called Carafate(sp). Ash has been on this before. Its been a while, but she's had it before. Some days I wonder if there's a med she hasn't been on, but that's beside the point. She also mentioned treating them some how while there inside scoping. I'm still not sure how we will know if there is an ulcer in the stomach itself since the scope won't go into the stomach, but she said that most of the time they arise in the areas of the anastomosis(attachment sites of the transplant).
I'll start calling in the morning. Dave and I want Ash to be more comfortable. We hate for her to be scoped again, but if it brings answers to what is causing her to be so uncomfortable then we need to have it done. I think I'll start with GI. We don't have an appointment with them until May 1st, but I'll try anyway. If that doesn't work Ill call her surgical team. They did the last biopsy for us. Between the two teams I'm sure something will get scheduled.
Of course I'm fighting ugly thoughts that pop up in the back of my mind. Things like ongoing rejection, PTLD, and the like. Surely we aren't headed in those directions again. Its just a bad habit that is hard to break when you've traveled this path again and again.
As always I know that our Nebraska team "will always take us back".
Missing this Kid
He left bright and early this morning. At 4:30am to be exact. I lay in my bed trying to fall back asleep, but struggling because I new I was gonna miss this kid. Guess what? I already do.
His class left this morning for a 3 day field trip to San Antonio. He's the only kid there without a parent. That part makes me ill. Not that he minds. Honestly, he doesn't. Not that I'm afraid he won't behave. Honestly, I know he will. Its just that I wish Dave or I were there to hang out with him. Unfortunately it just wasn't possible. He will be well taken care of. I completely trust those who are looking out for him. I know they will be good to him and I know he will have a great time. I'm a little jealous of them though. This is a great kid. Really cool guy. I would have loved to had the next 3 days to spend with him running around the Alamo, going to the Spurs game, and all the rest. Our school policy is that no siblings are allowed on these class trips. I understand the policy. Its a big deal. Once a year kind of thing to get away with just your friends, your classmates, and your parents. Currently though I can't travel away from Ash in the condition she happens to be in, and she's not really up for that far of a trip anyway(a bus trip with 30 something people wouldn't be good for her and I would have no way to stop and care for her needs). Dave had to choose one trip this year and since Allie's class is leaving for NASA on their trip next Monday(and her class has the same sibling policy) he scheduled to attend with her(he went with Blake when his class did NASA so it was only fair). Anyway, Blake's only been gone a few hours and I'm already missing him. I was missing him in the first 5 minutes.
Blake was really looking forward to this trip. Al baked him a big batch of brownies to take along. He grabbed some beef jerky and jalapeno chips too(his favorite snacks) for the long bus ride. Add his friends to the mix and he was more than ready to head out of town. He has a group of friends(5 of them) who have more fun together than should be allowed. Such great kids. I'm really happy for them. What a blessing they have been in his life. Especially over the last few years with all the ups and downs we go through with Ashley Kate. Blake is fiercely protective of Ash and when she's sick he takes it hard. This group of kids have helped take his mind off of her struggles during some intense times and I will forever be grateful for our school and the families in it. They have ministered to us in amazing ways. So, I'm missing my kid, but I'm so thrilled he gets to hang out with his group. Its going to be a great week for him. Who knows, maybe I'll get to sneak away for an evening with Al over the next 3 days. I know she's already got a date planned with her dad.
This week will probably go pretty fast. Ash has an evaluation on Friday morning. Those whole eval sheets make me crazy. I feel like we are constantly having to prove to the "world" that she is in fact very intelligent. If they can see that then perhaps we might get some assistance in teaching her more ASL. I'm pretty nervous about the whole thing. The last thing Ash likes to do is perform for strangers. She usually shuts down and does...ummmm...nothing. Thus resulting in a not so good evaluation from the "professional" whatever we are seeing at the time. I hate labels and this is what they are going to be doing. Labeling her. Putting check marks or worse yet, no check marks on a little form to come up with a label to help them make a decision.
Anyway, she woke with fevers again this morning, more vomiting too. Her cultures are negative from the first 24 hours. That's a blessing, but not an explanation. Her lab work actually looked good for her so I'm still confused. I'm planning on getting her out of the house today to take a little ride on her Amtryke. Hoping to encourage her to perk up today. She loves to look at the trees, the flowers, the bugs, the birds, etc. These are all things she recognizes and knows the signs for so a little distraction from not feeling so good is what I'm hoping for. If she perks up I'll take a few photos of her on our walk.
Hope you enjoy your day and are surrounded with His blessings. Take care. Trish
Ash is still spiking fevers. She has been off and on for the last 11 days. Her IV antibiotic will finish up on Wednesday morning. We drew new cultures today. No word yet. I'm hoping nothing new is brewing, but with unexplained fevers you just never know. She's sleeping. I don't see any signs of struggling. Her breathing is quiet. All seems fine except for these fevers and the daily vomiting. I'm just so confused.
Ash has not been "well" for months and months. We've been on this journey for a while now and its different than it ever has been before. All I can figure is that the amount of immunosuppressant drugs she is on is higher than it has ever been. She remains on 3 drugs as opposed to the 1 she was on before her rejection last fall. This is the only thing I can put my finger on when looking for answers. All I can do is guess that her suppressed system is not able to keep her well for more than just a few days at a time.
We have about one "good" day in every 4-5. Friday she looked better. Saturday she was great. So full of energy and personality. Sunday she began to slow. Today has not been good. Now tonight she's running the fever again. I have no idea what tomorrow will be. For now we sit and wait. When her last culture grew out we were notified immediately. It didn't take more than a couple of hours. The one taken the next afternoon in the ER proved to react the exact same way. The one taken two days later was clear. I'm hoping today's culture is clear, but I just don't know.
Enjoying each and every day with Ashley Kate is more important to me now more than ever. I just never know from one minute to the next how she will be feeling. I love to see our sweet baby smiling. I love to see her signing. I love to see her playing. I love her. I love her so very much. When she is feeling bad it breaks my heart. I wish there were something I could do for her. I wish so badly that I could make her body whole, but I can not. I will never be able to. The only thing I know to do is give her every opportunity to live life to the fullest on the days that she is feeling up to it. On the days when she isn't I find myself holding her as tightly as I can praying for more good days to come her way.
This is not an easy life. Its blessed, but not easy. Our hearts break for Ash over and over again and we find ourselves holding on to what we dream for her as tightly as we can. Praying that those dreams for our daughter might some day in some way come true. Until that day we keep loving this sweet girl with everything inside of us and thanking the Father for her life and her presence in ours.
Here's hoping the fever breaks and doesn't come back. Goodnight. Trish
Whew! What a busy few days we've had. Its been so enjoyable, but I'm tired.
We discharged from the hospital Thursday evening and couldn't wait for Dave to get off work and pick us up. As soon as those papers were signed Ash and I loaded our things and headed for fresh air. We stood outside and enjoyed the rush of freedom that comes over us after being cooped up inside the hospital. 6 days with no fresh air can seem like 6 months. Looking back over that past 3 years I have no idea how we've survived those long stays without a hint of sunshine on our faces. I hope to never repeat those. Anyway, we made it home and moved Ash's crib back into our room that very night. Its just easier when she's sick to have her near. Its not pretty cramming another piece of furniture into our tiny bedroom, but its convenient. When your low on sleep convenience wins.
Thursday was a rough day for her. She just didn't feel well. She struggled with a low grade fever and vomiting for most of the day. We ran the usual practice schedule for baseball that night as well as adding in a play rehearsal for Allie. Ash hung out in the car with me and enjoyed being out of the house. We read books through most of the practice. That night she slept a little, but not as much as I would have liked for her. She made up for the lack of rest on Friday and didn't open her eyes until after 11am. I ran errands to prepare for the weekend and Dave hung out with Ash. Friday was a much better day for her. She seemed to perk up and return to her silly self. Dave and I went to the school to watch the kids in the play and his parents came to sit with Ash. The play was fantastic! Allie enjoyed it so much and Blake...well maybe not so much. He was a good sport though. Here's just a few shots from the play.
I forgot to mention to Dave that Al would be wearing a wig. It took about half of this act for him to figure out that it was her! That cracked me up. All I can say is that I am SOOOO thankful she doesn't have curly blond hair. It just wasn't our Allison, but she was so funny to see like this.
In this scene she plays the role of a tourist. They are riding on the tour bus and watching one of Jesus' parables play out before them. The role of this character required her to be "married" to her good friend Christopher. This brought on lots of discussion at our house this week! Like I shared with her, if we had to choose a guy in her class to marry we would definitely put Christopher on the top of our list. They are really good friends.
We didn't get to watch Al in her role as a thorn(that took place on Saturday evening), but we did get to see Blake's debut as a thorn. He was awesome! I mean, I've never seen a kid be a thorn before, but I'd guess he was about the best thorn I've ever seen!
After the play we hurried out to run home and grab Ash, pack up Al(to spend the rest of the weekend with her grandparents), and then headed toward Mansfield in the RV. Ash was so thrilled to be going. She LOVES the RV. As soon as we open the door and step inside her face breaks out in a smile that crosses from ear to ear. I love this silly girl! She gets great joy out of the simplest of things.
The Tarheels played two pool games on Saturday. The first ended in a tie 4-4. The second was a hard loss 6-4 in the last inning. They played a little rough earlier on Saturday. Not their best baseball, forcing them into elimination play that evening. They came out with a win late last night to stay alive in Sunday's play. Sunday was a whole new day with a whole lot of good baseball to be played.
Blake played a lot at short stop, a little of second base, and then as always caught for the Tarheels. Today he threw out 3 runners from behind the plate and that was more than exciting for Dave and I to watch. We really enjoy watching him do what he loves so much. Sunday's first game was an exciting win of 7-0 against the top seeded team of the tournament. That advanced them to the semi-finals. The next game was by far the best baseball game we've seen this season. It was a tough battle to the end and in the last inning our guys had to walk off the field. The opponents took the lead by 1 run in the last inning and then time expired. They had a great time, enjoyed the game, and learned a lot. You can't ask for much more than that. We weren't disappointed at all.
Allie played soccer on Saturday and from what we hear played incredible. She spent the second half of the game in goalie box and blocked some amazing shots. In the end her team lost to the Lady Longhorns by 2 goals. She was disappointed, but gets to play for the Longhorns as a guest player in the upcoming tournament. She has some really good friends on that team and we are looking forward to some great games in two weeks.
She went from the field back to the school for the second performance. This acting thing is something she really enjoys and we are considering allowing her to join the children's theater here in town.
Ashley Kate had a good weekend. We had the privilege of sharing a little about her with a couple of newer dads to our team and it was a joy to watch them visit with her. This morning they both greeted her, spoke directly to her and told her good morning. Ash looked up from her book, flashed them her smile and waved "hello". That blessed my heart! She is becoming more and more social each day. She is such a sweet little girl and to see the fear of others begin to disappear from her is such a blessing. I want so badly for the world to know her as we do. Once she figures out that not everyone out there is going to cause her pain I just know she's going to love people. One of the dads shared with Dave that he used what he learned of Ashley from us yesterday in his Sunday school lesson with two of the boys on the way to the game this morning. What an incredible blessing it was to hear that her story was able to be used in that way. I can't describe to you the joy that swelled in my heart. Blake's friends are so good with Ash. I'm grateful for that.
Ash has a few issues we are dealing with, but hopefully we will get a handle on them this week. She continues vomiting, has developed an injury around her mickey-button and an ulcer in her tummy. The ulcers come from the dose of Prednisone. In the past she has been on Prevacid in conjunction with Prednisone to protect her from this happening, but somehow it was overlooked this time. I'm going to make some calls and try to get her some help this week. The pain is pretty miserable and all of the vomiting only makes it worse. She is bleeding from the inside of her tummy and it is coming out the opening in her abdomen where the button is placed. Its causing her a lot of discomfort. The size of the hole has also changed with her change in size from all the fluid she held last week and so the button no longer fits well. That is causing a lot of leaking of stomach content onto her skin and its pretty acidic. This breaks down the skin around the button and it hurts too. I'm doing my best to keep it dry and to keep her comfortable.
That pretty much sums up our weekend. Its been a super busy time for us, but we are so grateful for the time we are given to spend together. Ash is coming back down a little closer to her normal size. Still peeing diapers that weigh close to 500ccs! As soon as she sheds the last of this extra fluid I'll snap some pictures to share. You wouldn't want to see her looking the way she has lately. Its pretty amazing the way her body changes. Hope you all are well. Sorry for the long post. I'll try to keep up a little better this week. I think its going to be a slower one for us. Take care guys. Trish
An update is coming. I promise. Life has been blowing full steam ahead since discharge from the hospital. We just walked in the door from Mansfield and once I get the house settled, the RV unpacked, the kids ready for school tomorrow, dinner cooked, and everyone tucked in their beds I will update on Ashley Kate, how she's been feeling, and all that is happening in our part of the world.
Things are fine, just busy, busy, busy. A little out of control, but wonderful. I love being home. LOVE, LOVE, LOVE being home in Texas with Ashley Kate. Sorry to worry you guys. Things have been so busy I didn't even realize I hadn't updated since discharge. Its coming. Soon.
Bloods all in
Its amazing what a little bit of hemoglobin can do for you. Ash's color is finally back to normal. Her O2 sats are at 100%, her heart rate down, her respiration's beautiful, and blood pressures text book. I'm so glad we transfused today. I really believe it will give her what she needs to continue healing from this infection.
Her fluid status? She's still HUGE! Honestly, I've never seen her alert(I have seen her on the vent) like this. I can hardly pick her up she's so heavy! This baby girl is SO full of fluid, but as long as those lungs are clear and she keeps on peeing(she is literally peeing so much its leaking through her diapers! Thank you God those kidneys are working) then she should be ok.
We're scheduled to run her antibiotic at 4:30 and then we will wait for Dave to finish up at the office and come retrieve us. I'm so happy to be headed home today. I am really looking forward to having the 3 kids tucked into bed and sitting next to Dave on the couch tonight. It feels so safe, so comforting, so good after being gone. I would have to say its my favorite place in the world. Our home, with our children, together.
As happy as my heart is feeling about our discharge it is still heavily burdened for several others. What a life we live since the birth of our Ashley. My eyes have been opened to the sufferings of others. My heart holds closely many, many parents and children who daily fight the battle for survival in hospitals across our country. Friends, I know you lists are long. I know how busy our lives can be. I also know how perfectly normal life can be until one day your feet begin to walk a path you wouldn't wish on anyone. When your children are hurting and struggling to survive I can think of no greater pain in this world. I would humbly ask that as the Lord brings this list of sweet babies to your mind that you whisper their names to Him and pray for strength not only for them but for their mommy's and daddy's.
Emerson(2 years old), who is in the hospital with a line infection and is still inactive on the transplant list. We are praying for her second chance.
Kylie(3years old), who is scheduled for surgery Friday morning. Even minor procedures become not so minor when dealing with a transplant child. Pray for protection, and quick healing.
Gavin(2 years old), who is also back in the hospital with a line infection. Pray for his strength and his spirit to return and be restored.
Stellan(4 months old), who is currently in a tough fight for his life. His little heart is struggling to regulate and his condition is very serious.
Lauren(1 year old), who is one year out from her injury and continues to struggle each and every day to overcome.
These are just five from our list who I know really need prayer today as they continue on their journeys. Thank you for caring. Thank you for sticking close to us over these last few years. Thank you for loving our sweet Ashley and for praying for her. From the very depths of my heart I truly thank you for speaking her name to our Father. I know He loves her. As hard as it is for me to imagine anyone loving this child as much I do, He loves her even more. On top of that knowledge I try to swallow this; that he loves me that much too. He is truly amazing.
...we will be discharged.
It won't be this morning, or even this afternoon, but by evening I should be tucking this beautiful girl into her bed and kissing her sweet forehead through the night as well as her sister's and brother's.
So far it looks as though we caught this infection early and because of that have saved our sweet Ash from going the other way on us. Thank you Father for sparing her from the worst of what this bug can do!
Last night the doctor agreed with us about Ash's x-ray. He too was not overly concerned knowing what her lungs have done in the past. This is just a little blip and should resolve on its own.
She is still very, very heavy. Making progress, but weighing over 15 kilos. The fluid should continue to be drained by her kidneys and finally all come off. Her BUN has recovered, but her Hemoglobin and Hematacrit have dropped once again, requiring her to receive a blood transfusion throughout today. It will take 3 hours for the blood to arrive, 3 hours to infuse it, and another 3 to monitor her before being discharged. Its going to be a long, frustrating day for Ash having vitals taken every 15-30minutes for almost 6hours, but in the end will prove to have been worth it. She will recover and feel much stronger and energetic for the remainder of this week and on into the weekend with the blood on board. The infection has gobbled up her red blood cells and that in combination with the drawing of daily labs have depleted her reserve.
How and where did Ash get this infection? I've been struggling with that all this time. I know I can't prevent this from happening forever and that eventually with a central line its going to catch up with you, but still it haunts me. With the bug that grew back on her cultures I think I may know what could have caused this and will be changing things in hopes of not having it happen again. Currently Ash receives one bath a week. Let me explain that better. One bath in a tub of water. She is given a "sponge bath" each day and cleaned, but once a week I sit her little bottom in a small amount of water in the tub to clean her well. Because of where her line is placed(right above her very deep transplant scar. The line dressing covers the insertion site and the top of this deep incision scar.) it makes washing her extremely difficult. In addition to that problem she still has her ostomy. Bathing is not easy as I am constantly worried about transfer issues. Especially the older she gets. Since she doesn't stand or walk getting her in and out of the tub is very, very hard on me. Anyway, I believe that water from her bath pooled in her incision and transferred a bacteria to her line. I thought the culture would have shown that I transferred something off of my skin onto her line or that e-coli from her bowel would have been transferred there. This is not what happened and I'm so grateful for that because the guilt is an enormous load to carry. Anyway, I will not be giving her that one bath a week until this line is removed. We will continue to sponge bathe and wash her hair on the bed and do our best to keep her completely out of the water. We aren't completely sure this was the scenario, but it does make the most sense. Ash won't mind because she HATES the bathtub.
So once we are home I will attempt to catch up with the kids and figure out how to get all that the rest of this week holds for them accomplished. The schedule is as crazy as it can get and would be impossible without the help Dave's mom is giving. I'm so thankful she is in town this week and so willing to help. Its only Wednesday morning and we still have 3 baseball practices, 1 dress rehearsal, a math Olympics(in Plano), a speech meet(in Henderson), a performance in the school play(remember my kids are the thorns?), a soccer game, and a baseball tournament at the Field of Dreams in Mansfield(you guys guessed right). Life is crazy, blessed, and fun! I'm just so grateful sweet Ash is getting well and we will be discharged in time to take part in some of it(I mean I will. She will be resting at home for the next few days.) Anyway, I'm grateful. So very grateful to the Father for His mercy, His love, and His blessings.
Have a great Wednesday. Hope your week is blessed. Trish
In about an hour...
...I get to run home for a couple of hours.
I'm going to light a candle,make some beds, do some dishes, throw in a couple of loads of laundry, run a dust mop over the floors, and take a long bath. Yeah me! Then I'll get dressed and come back up to spend the night with Ash. I might even see if Dave minds if I make a Target run before coming back to pick up one of the books that was recommended.
The older kids have dress rehearsal for the school play tonight, then they are coming by the hospital to say good night to Ash. Hopefully I'll get to run in to them for a few minutes either here at the hospital or at home before they climb into bed.
Ashley's chest x-ray is questionable. The report said there is a small, collapsed, triangular portion in the lower left lung and a small plural effusion. I looked at the x-rays myself and although I do see the areas of concern I also have in the back of my mind several images of her lungs. This currently does not look that bad to me. I've seen her x-rays completely whited out and so in comparison I'm a little concerned not wanting things to progress, but also encouraged that they don't look that bad. I'm waiting on her doctor to arrive and take a peek at them so I can listen to his recommendations. I think we need a little CPT and some more time to allow her body to reabsorb that fluid into the vessels and then rid itself of it. I've kept her sitting up for most of today and all that can do is help this situation. Her breath sounds still sound clear to me, maybe a little coarse. If we can keep from accumulating more fluid tonight then I think she'll be alright. The radiologist actually requested a couple of more views and perhaps a CT scan. I'm hoping to avoid the CT scan. Like I said were waiting on her doctor to make his recommendations after looking at the films.
I'm officially doing the countdown. Our office closes in 52minutes and then I'll give him 10 to wrap it up and 5 to drive over. My bathtub is calling my name.
Peeing it Off
Ashley Kate has peed 1200+ ccs of fluid since this time yesterday afternoon. Oh...My...Goodness. That is unbelievable for her sluggish kidneys(they like to move in slow motion because of her immunosuppressants).
She is still huge, but is able to sit up this afternoon. That was an impossibility yesterday. She had a bath and a shampoo, is wearing clothes today, and playing with her ladybug. All of this is encouraging to me. Yesterday was miserable and all she could do was cry. Today she's at least got her eyes open and is watching Blue and looking at her books.
She keeps signing to us that she hurts, but won't tell me where. I'm guessing she doesn't know how to tell me that her whole body is aching, but overall I think she's feeling better.
Her BUN is still pretty high, but is trending down from 59to44. Its got a long way to go, but is headed in the right direction. If she can keep that fluid off then we might stand a chance at getting out sometime this week.
Dave just came in and shared with me that with her infection the walls of the vessels became weak and the cells got larger so the fluid leaked out and into her tissues(I understood that part already). So what her body is doing now is pulling that fluid back through those larger cells in the vessels walls. He said if it can leak out then it can get pulled back in. Makes sense huh?(This is the part I didn't know about it) He's a pretty smart guy. I was sitting here imagining that with all this peeing she's doing she is only getting dryer because it is taking more fluid out of the vessel. I guess thats not how it works. Thank goodness. So if she can keep on peeing and pulling that fluid off then we can get out of here this week. The trick is going to be to get her to rid herself of that fluid before it settles in her plural spaces outside her lungs. That's her tendency when she's overloaded, but she's older now, a little bigger, and farther out from transplant and all of that works in her favor. We are waiting on the results of her chest x-ray to find out if she is accumulating fluid in those spaces.
I just wanted to update you all on her condition. I feel like it has improved since last night. Thank you so much for praying for us today. I know there are so many sick children this week that I'm following and praying for and to know that you guys care so much about Ash to add her to your lists blesses my heart. Have a great day. Trish
Ash to catch a break from illness
An eye appointment for Ash, but first she would have to catch that break
A dental appointment for Ash before her badly damaged teeth begin to fall out of her mouth, but you already know about the whole catching a break thing
A good nights sleep. For both her and I.
A nap to follow that good nights sleep. They had to wake me up when the doctor arrived this morning for rounds. Ummm... thats a little embarrassing. I hadn't even brushed my teeth or washed my face.
An afternoon to spend with Blake and Allison. I haven't spent more than 20 minutes with them since last Friday. I really miss those two kids!
A stroll through Target. For the nerves you know. I don't think I've been to Target in months. I'm really missing that place!
A new coloring book and crayons for Ashley Kate purchased during that Target stroll I'm needing( I mean dreaming of).
A lunch date with Dave. He's been working really hard lately and I'm missing that time to chat with my friend.
A vacation. You know, nothing huge. I'm not talking the beaches of Hawaii, just a jaunt to the ballpark in the RV to watch my kid. We're scheduled to play in Mansfield this weekend.
A trip to Hawaii. OK, I thought about my previous statement and figured this is my dream so why not. I would love to watch my girls playing in the sand under a palm tree or two.
A magic fluid remover( Kind of like the magic eraser that cleans up the messes around my house). To take all this crazy fluid mess off my baby's body and put it back where it belongs. I'm thinking of something that looks like a princess wand or something to wave around and make it happen. If anybody out there has one could I borrow it this afternoon?
A kick in the rear. Honestly, if someone doesn't do it soon and get me to lose some of this weight then I'm going spend the rest of my life miserable. They only makes pants so large you know.
A revival. In my spirit, my heart, my soul. Have you ever been so tired and so weary you find yourself lost in it all, knowing the truth but searching like there's no tomorrow?
A shower, but thats not going to happen until Dave gets here tonight some time after 6.
A new set of nails and while I'm at it probably a pedicure too( I told you I'm dreaming this post up so I get to add whatever I'd like).
A snack to go along with my diet coke the nurse just greeted me with:)
A house keeper. My house is beyond dirty. I stepped in there last night to pick up jammies for Ash and was so overwhelmed I decided to give up and not worry about it(at least until we get discharged and I can do something about it).
A good book.
A fast forward button so we could just skip out on this last two months of the school year and all that's going on. Its crazy up there and its making us all crazy this week.
Were would you hide an extra 4 lbs if it suddenly snuck up on you in like the last 2 days? Your hips? Your tummy? Your backside? Try packing those 4 lbs in your neck and cheeks. What do you think you would look like? Just try and imagine.
Our Ashley is miserable. Utterly miserable. She began crying and struggling around 11pm last night and has now been crying for an almost 24 hours straight. She is having a very hard time with all this extra fluid and the aches and pains that come from dry vessels. My heart is broken for her. Our happy baby is so very, very sad, and nothing I do is helpful. Holding her at an incredibly heavy 15.5kilos(from 13.2k to 14.6k to 15.5) is almost impossible. I'm having a very hard time making her comfortable. Its proving to be impossible.
The albumin? As far as I can tell has done nothing to help. She is just getting bigger and bigger and bigger with each cc of fluid that is being pumped into her body.
This admission is proving to be exhausting. None of us(Dave, Ash or myself) are finding any rest. We are passing each other in the doorway of this room and saying "goodnight, I love ya, be sure and _________ or don't forget to do __________." I haven't had a decent conversation with Dave since all of this started Friday morning. I miss him, but am so grateful to have those 5 minutes in the doorway. As I drove home tonight to retrieve a fresh pile of blankets and jammies for Ash I found myself struggling not to cry from the stress of this past weekend and today. Then all of a sudden I was thankful. So thankful for this hospital down the street from our home and for the nurses and doctors who are doing their best to care for Ash during this mess. I'll take 5 minutes with Dave a day over being separated from him by 700 miles and several weeks between flights. Even though this is tough, its been tougher on us and we have survived. I just keep reminding myself of that.
Still I can't pretend that I'm not concerned. I really and truly am. Things have changed drastically since yesterday afternoon. Ash was looking great and now she looks not so great. Her breathing is pretty rapid tonight and she sounds a little fluidy(I just made up that word) to me as I sit here and prepare her TPN. We have gone from an almost discharge this morning to not knowing where we are headed. We desperately need for her fluid status to turn around by morning. This is a scary time. We've seen what happens to our sweet baby when it doesn't and I don't want to relive those scenarios again.
My heart is anxious tonight as I take this shift so that Dave can finally get some sleep. I'm praying for God to protect Ash and to put that fluid back were it belongs. Please join me. Goodnight my friends. Trish
Last night I left a happy, coloring, pig tail wearing, baby girl at the hospital with her daddy assuring him that although I had not slept in the last two nights that Ashley Kate had and that once she was asleep he would be allowed to rest well (since our med schedule was reduced). He happily told us good night and Blake, Allison and myself kissed our baby pickle and went home to sleep.
This morning I arrived at the hospital to find out that Dave didn't sleep more than 2 hours all night(if even that long) because Ash was miserable and fussy the whole night long. I felt horrible knowing that Dave was already tired from his trip with the kids and that today he had a very full schedule as well as a class to teach this evening. I was so wishing I had stuck it out and sent him on home to sleep.
Then I looked over at Ashley Kate and was shocked! Her face was and is ENORMOUS! As are her hands. I picked her up and almost dropped her not expecting her to be as heavy as she is. Honestly I thought she was fluid overloaded by the looks of her face. Then her lab work came back. Her BUN is up to 59! We are so confused. Before her labs came back the doctor had rounded and decided to send her home this afternoon. This was all before I had really looked at Ash to notice the obvious changes she had endured overnight. Now with a BUN this high I am assuming we are going no where. Confusion? It comes in the fact that she has had IV fluids running non stop 24 hours a day since Friday's admission along with her TPN and formula. How is this child dehydrated? You would think her fluid status would be improving instead of getting worse. Her ostomy output was great yesterday and she had not vomited since the wee hours of Saturday morning. She's not losing huge amounts of fluid from anywhere. Why is she dry? I would venture to say that the only time I have seen her 3rd space fluids(dry inside the vessels and sending it out into the tissues causing extreme edema) is when she is septic. Which would make sense with a line infection except for the fact that she has been fever free since Friday evening. There are no signs of sepsis(an overall infection throughout her blood stream). So this all leaves us VERY confused and trying to figure out what to do. If we keep pushing fluids then her body could keep transferring them and eventually she has a tendency to transfer those fluid to her lungs and that puts us in real trouble, but we have no choice. When your vessels are dry you have to push fluids. I am pretty much on the edge not knowing which way this is going to go for us today. I've seen it get really ugly really fast in this situation, but other than being miserable from her swollen state she presents to be fine.
As far as fever and symptoms are concerned she has none. We are going to use some albumin to try and pull fluid back into her blood vessels and this may or may not work. Sometimes it helps her and sometimes it doesn't. I have no idea what is happening and who knows when or if we are being discharged. The doctor is trying to make some decisions now.
Her culture from yesterday is clear. The organism has been identified from Thursday and Friday's culture and has shown response to several treatments. Her antibiotics have been changed to only once a day and things were looking really good for her yesterday. She shows no signs of the infection. Today may or may not be a different story. I'm not sure how quickly this can be corrected, but we will have to wait and see.
So I sit here searching for signs of Ash among all the swelling and wait for the albumin to get started. I'm confused, but accepting it. Its just another day in the hospital living this crazy life of ours. I think Ash is getting better, but she might not be. Who knows?
That's the result we are waiting to see. We drew new cultures this afternoon and are hoping nothing grows. If we can get a negative then we can be discharged home sometime this week. If it comes back positive then we will wait another 2 days until we check again. The bug has still not been identified. All we know is that there are no gram positive rods only gram negatives showing themselves. That means we stopped one of the anti-biotics and are now dosing only one drug every 12 hours. Hopefully we might get some sleep tonight. That would be a huge blessing because I'm about to drop.
I started her feedings back last night at half the rate she was at before getting this bug. She seems to have tolerated them ok. No vomiting, but a high stool output. We won't be advancing until her bowel can slow down the output a little.
With all the stopping of her TPN to run meds every few hours she woke up pretty dry this morning. She hasn't been able to pee more than a few drops since 5pm yesterday. Were trying to catch her back up on her fluids today and expect things to get better now that we will only be stopping her IV fluids and TPN twice a day for an hour.
She's napping now with the cutest pair of big girl pig tails you've ever seen and huge pink and red bows. I sure am missing my camera! I think I'll lay down and try and close my eyes for a few minutes too.
Dave and the kids are kayaking(sp?) this afternoon and then they will be headed home this evening. Can't wait to see them. Have a great day and take care. Trish
One of us is...
...well rested and I'm thankful for that. I had hoped for Ash to be fever free, needle escaping, and well rested through the night and she was exactly that. Thank you Father for those blessings!
On the other hand, I'm not so rested. If you walked into this hospital room this morning the sight of me in my t-shirt and Adidas pants, no make-up on, hair un done, and no intention of changing any of that would be proof enough. I'm cuddled under my "hospital" blanket next to Ash's bed delivering water to the thirsty pickle. She is fussy and unhappy this morning, extremely pale, nauseated with the slightest movements, and a little shaky. When she signs for her water I had better get up and deliver it fast or the whimpering begins. So, instead of getting showered and cleaned up this morning I'm playing the role of "water boy" and just tending to Ash. It wont really matter cause its just Ash and I in our corner of the peds floor in our regular room here at our home hospital(sounds good huh? Home hospital). No one comes in, there aren't liver teams, or transplant docs, or residents popping in and out(I love it here, as much as you can love a hospital). Its just us and our nurse who delivers meds every few hours. Other than that we girls will just sit here and do a whole lot of nothing today and I'm okay with that. I mean I would rather us be at the cabin with Dave and the kids, but you know what I'm talking about.
Ash's med schedule is a little crazy as we fight this bug. I had to access her line at 9pm, 11pm, 1am again at 2am, slept till 4am then accessed again, at 5am and then tried to fall asleep until 7am, then finished off at 8am. We have until noon till we start poking around on her again. Like I said, I'm so thankful my sweet girl slept through every single bit of this and did not spike a fever causing her to have blood drawn in the night. Such a huge blessing. I do wish I had a camera with me to show you how sprawled out across the bed she is and how she doesn't feel like sharing it with mommy. Instead mommy "napped" on the couch next to the bed and the crib (made up for the gherkin) sat empty last night.
I did brush me teeth early this morning and I might get up to wash my face at some point today. Might being the important word in that last statement. Then again, I might not. Just how I'm feeling about today. I'll just see. I'm pretty sure if I had a gigantic diet coke from Sonic about now I could muster the energy to get up, but since I don't I'm just pretending that I don't need to.
Its impossible not to feel it. It doesn't matter that I know deep down inside that I do everything in my power to be as careful as possible. I still feel it. Its an overwhelming feeling that makes me ill. My stomach is in knots as I lay here on this couch and attempt to sleep.
When I handed Ash over to the surgeons' arms on the night of transplant. I felt it. It was my choice. I was responsible.
When I heard the code come across the speaker and saw the crash cart being pushed down the hall. I felt it. I had signed the consent. I did it. It was my choice. I was responsible.
When I noticed she wasn't herself last night, drew the blood cultures, and cleaned up her vomit. I knew. I'm the one who cares for her line. If an infection is to be found it got there by my hands. I felt it. I was responsible.
I can't explain the enormity of the burden I feel when making decisions about Ash's health care. Its usually me who has to put my signature on all of the consent forms. Its usually me who has to manage her daily meds and line care. Its my job and its not an easy one. Loving my daughter is easy, being the one the buck stops with is not.
As I have watched her go in and out from her happy self to feeling miserable all through out today I have felt it. That whole responsibility thing. Its crazy. I know I didn't make her sick, but I can't help but question the when, where, or how this bug has gotten into her blood stream. At what point did I screw up? Its not a little bug. Its an ugly bug. Gram negatives are nasty. Everyone is tiptoeing around wondering if it was caught early enough for the drugs to do the trick or if she's going to go down hill. "Time will tell. We will manage her clinically for now. She'll
either respond or she won't and we will know at that point if she needs to move on." That means transfer. I know what he meant.
All day we have watched as her fevers spike. Her little body begins to shake. Almost seizure like. Brought on by intensely high fevers that shoot up. She has no ability to control the shaking. Its scary. She feels so bad during those moments she just moans and shakes. I sit and watch and feel it. I'm responsible. At least thats what my heart feels.
Then once the fevers break she returns to her happy little self. She sits on the bed, reads books, watches Blue, signs, and asks for drinks. Lots of drinks. You would think she was on the dry side of things by the amounts of water she is requesting, but her BUN and Creatnine levels were beautiful today. The only out of whack area on her lab work was an increase in her white count which confirms her infection. Some of her electrolytes were a little off, but not by much. Easily correctable at this point. I'm hoping it stays that way.
I wish this weren't happening. I have no idea how things are going to go. Hopefully we will get a handle on all of this, her fevers will stop, and in a few days we will be back home running IV meds every 8 hours instead of in here. Thats what everyone is hoping anyway. Lets make this as easy as possible. Please. As easy as possible for Ash. Thats my prayer.
With the next fever spike we have to draw more blood. She's sleeping peacefully at this time and if she could just keep from becoming febrile through the night then no one will be poking her veins looking for blood. I'm hopeful we'll make it through the night without waking her up in this manner. Again, I will feel it. Responsible.
Its what we do
Ashley Kate and I are spending our weekend(and maybe a little of next week too) in the hospital and Dave and the kids have run off to spend the weekend in our anniversary cabin at Beaver's Bend. Its just what we do.
The cultures I drew from last night grew back a bad bug. Gram negative something or other. So here we sit. Ash is currently receiving some anti-biotics and the plan is to hopefully get some clear stains in the next few days and then finish up on our own back home. This is actually something new for us. She hasn't had a line infection since she was 6 months old and so this admission is a little different. The funny thing is that this particular bug is usually a chest and lung bug and she happens to have a beautifully clear chest x-ray. Praise God for that one.
Ash looks pretty good at this time. This morning her presentation was a little scary, but it only lasted an hour or so and then she bounced back and is behaving like her happy, little self. She's not even fussing. Just waving to people(waving for them to go bye-bye and pointing out the door to them) and being really sweet. I sure love this little girl. I would show you some pics of just how cute she is being, but my travel camera is broken and our good one is on its way to Beavers Bend with Dave and the kids. So you'll have to trust me when I tell you she's pretty cute today.
The kids were torn about wanting to go and wanting to stay because of Ash, but in the end Dave and I decided that we would continue to raise them with our philosophy of you might as well live life if your going to be alive. Its what we do. Ashley Kate's journey has taught us about whats important in this life and whats not so important. Ash and mom hang out at hospitals when we have to and their lives go on because we choose for them too. If we stopped living with Blake and Al every time Ash got sick they would miss so much and were just not willing to do that. Of course there are times when she's critical and we want them close by, but that's a different story then what we are currently going through (again I praise God for that). Anyway I know they are going to have a great time and they will have their dad's undivided attention. They deserve that this weekend and Ash has mine. Again, its what we do.
Dave and I will get our time together just as soon as Ash comes off TPN and has this line removed. We can celebrate 16 years anytime. It didn't have to be this weekend or last. That's just silly. Who knows maybe we'll be able to venture a little farther than just a couple of hours? That could be fun? He promised we'd do something and I believe him. We both really want to get away at some point.
So I hope your weekend plans are going according to what you had hoped. Ours tend to get a little crazy never really knowing how the pickle is going to be feeling. Take care and God bless. Trish
...she might have something viral in her gut. Just a guess, but when holding her I can hear and feel her gut rolling and rumbling. She can't keep anything down and her stool output is climbing. So like I said it just a guess, but I'm suspicious.
Can I just share with you how incredibly disappointed I am? Honestly, I am. We were SO CLOSE! She had been free from coughs, vomiting, fevers, runny nose, etc. for about the last 10 days. No breathing treatments or rattles in her chests. She was turning a corner and looking good. She was making HUGE progress in her feeds. We had made it all the way to 70cc an hour with TPN being weaned all the back to only 10 hours a day. SO CLOSE! Our goal is 80ccs an hour. Now we have to stop feedings, ramp up the TPN and try to stay on top of fluid losses. You can't feed an rumbly tummy that vomits when the food hits it and a gut that is stooling out faster than you can push it in. Instead of a full bag of formula hanging from her IV pole this morning she has a full bag of TPN and IV support fluids. I am disappointed. There is no getting around that fact.
On top of this nonsense that began yesterday afternoon her lab work shows that her Hemoglobin and Hematacrit are really, really low. Her hemoglobin is only 7.9. We received orders from Nebraska to run a lot of extra labs to look at her iron and saturations and lots of other stuff I've never heard of. They haven't sent us in for a transfusion, but I think its just around the corner unless her body kicks into over drive and does some blood making this weekend. Ugh!
I so desperately want Ash to get out of this cycle. Its been going on since October of last year and she needs to catch a break. A break longer than 10 days. Thats been her longest stretch of "health" in all of that time.
It is for these reasons and these reasons only that I was hesitant to leave her this weekend. I more than anyone look forward to time away with Dave. He's awesome! He's my best friend and makes me laugh like no one else. We are as solid as they come and spending time together is something we both want and need. On the other hand, you can't just pass a kid like Ash off to anyone. We don't have respite care or nursing care that comes in to help us. Not that we want it. We are Ash's parents and we like caring for her, but even if we wanted that help its not affordable to us at this time. That's just not real life. If Ashley did not have a central line then I would have taken this trip. I'm comfortable with his parents changing her ostomy, giving meds via her g-tube and even if need be having them pop a mickey button back into her tummy if it accidentally came out(which does happen more often then you might think). A central line is a whole different story. Dave and I were trained early on(back in our NICU) days how vital this line is. It is not something that can be taken lightly. It is serious business that can cost a patient their life. We are so careful with her line. God has blessed us with some major protection in Ash's life. She has had a line for all but a few months of her 3 and 1/2 years and has only had 1 line infection. She may have one now which is why we sent the cultures. Anytime they spike a fever with a line in place you have to rule it out. To place such a huge responsibility on a grandparent who has never flushed a line, prepared and connected a bag of TPN or IV fluids to a line is not fair. Its just not. I know they could do it, but its not fair to ask them too.
There will come a day when our weekend get aways will return. Until then we will continue hanging out on our couch together, holding hands and laughing at old re-runs of Everybody Loves Raymond. Watching our kids play ball each week, playing with our baby together each evening and sneaking out to dinner to discuss the heavier thoughts that plague our minds in those private moments. Life is good, it is blessed, and we are happy. We love our God, our family, our children, and our life. Even when it gets a little messy(like today).
Thanks so much for praying for our sweet Ashley. My hope is that she bounces back at any minute and we can pick back up where we left off. Thank you for your encouragement. Enjoy your weekends and your families. Take care. Trish
Not going to happen
For our anniversary Dave booked us one of our favorite get aways for a couple of nights this weekend. Its been close to 4 years since the two of us went away to spend any time together. I wasn't thrilled. Let me clarify. Yes, I was thrilled at his thoughtfulness and the idea of it just being the two of us visiting under the stars and surrounded by absolute beauty, but not thrilled about the idea of leaving Ashley Kate behind. We've gone back and forth about this for a week and he feels very strongly about us doing this. I on the other hand feel very strongly about caring for Ash and the idea of someone else having that responsibility even for just a couple of days doesn't sit well with me. It just seems like time away together is a luxury that our life doesn't afford us at this time. Currently Ash has a central line, is on TPN, requires replacement fluids every 12 hours, and add to that her feedings and med schedule and its just a little much to ask someone else to take on. She gets sick SO fast and I couldn't forgive myself if it happened while we were away enjoying ourselves. What if her g-tube got pulled out? We'd be two hours away. What if her line dressing came off? We'd be two hours away. What if she spiked a fever? Started vomiting? Felt awful? We'd be two hours away.
Well, I had almost consented and talked myself into taking the little trip with him today(we were supposed to leave in the morning) until...she spiked a fever this afternoon. A really high fever. Then she began to vomit. Lots of vomit. Projectile while driving down the road. She's not feeling well. Somethings up. Her nose started running and her cheeks are really flush. I drew cultures from the line, drained her tummy, gave some meds and now I'm waiting. Waiting for the orders to be sent to the lab and for results to start coming back. Hopefully we won't hear anything. That means her line was clear and there is no infection brewing in the blood.
I haven't told Dave yet. He'll be in from the office shortly. It just seems like its not going to happen. For a while anyway. I know he's going to be disappointed(I am too). I know we need time. Its important. Its the finding how to make it for each other thats a struggle. I'm not sure when or if we will ever get back to that place when spending a weekend away together to rejuvenate is possible again. For today all I know is that its not going to happen and Ash is getting sick. Again.
We're all exhausted. Its been a LONG winter and tomorrow is the first day of spring. My prayer is that Ash's health will become more and more stable the closer we make it to summer. Maybe Dave and I can spend an evening watching a movie together or something like that. I like being home, and at least I won't have to worry about all of this happening on somebody else's watch while were away taking long walks and holding hands. It would have been really difficult to pretend I was concentrating on us when my mind would have been consumed with thoughts of how Ash was doing. In the end I think things have a way of working out the way they were supposed to anyway.
Someday life will become a little more predictable and taking trips again will be possible. Its just not today.
I woke this morning and had to shake off the overwhelming disappointment that tends to creep upon me after a night like I had last night. I can't really explain the feelings other than telling you that when something so REAL is happening when you close your eyes and then you open them to realize it didn't happen and may never happen then you find yourself fighting to stay encouraged. It makes no sense to me. I stood in the shower and couldn't find the words to pray. I would start and then just stop and shake my head as the water sprayed in my face. I guess words aren't really necessary. God already knows my heart and I believe He sees and understands the feelings I can't find words to share with Him. Anyway, its a struggle.
Last night I had the privilege of listening to my sweet Ashely rattle on and on and on. As long as my eyes were closed and I stayed asleep then I could hear her tiny voice. She talked and I listened. Her first words caught me off guard and then I found myself captivated by all she had to say. Oh what I wouldn't give for it to be real! For her to find her voice again and fill my ears with toddler hood tales and nonsense. To hear her say my name or ask for her daddy. To not be able to tear myself away for fear of missing out on the next cute thing she had to say. Dave and I have decided that if we had to choose between the two then we could choose the ability to talk over the ability to walk. What an unreal conversation that was! I never dreamed the two of us would be sitting at dinner on our 16th anniversary and discussing such things about our baby. Sometimes life doesn't make any sense at all. In that moment it didn't. I fought back tears and tried to put on a happy face, but the truth is that we, neither he or I, ever thought we would have to battle either of these issues in her life. We thought about a lot of things, but walking and talking never crossed our minds. We just assumed.
So I've received a lot of question about Ash and her abilities lately and I haven't found the words to answer them. I'm gonna attempt a few of them today, but to be honest I don't really have any answers for you and we haven't found anyone else who can answer them for us either. We've asked the very same things you guys are asking us on multiple occasions and I still find myself asking almost daily in my prayers. Here goes.
Can Ashley hear or is she deaf?
This one is easy. She hears beautifully, and I am grateful for this. To date we have found no evidence of a lack of hearing. Praise God.
Does she understand language?
Yes and no. Its obvious to us that she understands many, many things. If I ask her if she would like to read a book? then she will either shake her head no or sign the word "book. So yes, she does understand when we speak to her. If I ask her are you excited about your birthday? She has no understanding of what her birthday is or that she should be filled with excitement over it. Will she ever understand this? I'm not sure. If I ask her if she would like a drink then she will sign "drink". If I ask are you thirsty? then she will just stare at me and doesn't have a clue what I just said to her. So yes, she does understand language and no, she doesn't. Its all relative and I'm not sure why she understand what she does and why she doesn't understand what she doesn't. I don't get it.
Why doesn't she speak?
I'm not entirely sure. She did speak. Before transplant and even for 4 months after it. The day I last heard her voice was the day she coded and endured cardiac arrest and CPR. Is this why she stopped? I don't know. We assume so, but can't prove it and it wouldn't do us any good even if we could. What would it change if we knew that this was the cause? Nothing. If she lost oxygen to her brain due to this experience we can't repair that or give it back so it doesn't really matter. Ash doesn't talk. Will she ever? I hope so. With everything inside of me I hope and pray that God grants her this ability, but if He chooses not to then we will sign and we are all working hard to get better and better at this. I still ask this same question to Dave or to myself at least once a week. I can't quite get over this or have yet to understand it. Even now tears burn my eyes as I type this and I'm struggling with it today.
Is there something wrong with her legs or is she paralyzed?
No, she's not paralyzed, and we haven't discovered anything wrong with her legs. We don't know why she doesn't stand or walk. This is something we always expected her to do, but she never has. Dave and I thought for sure that it would happen for her after transplant like all the other kids we've met, but it didn't and hasn't. We continue to work on it each and every week. We make her stand on her feet, in her immobilizers, stander, and gait trainer. I would like to say that she's making progress and I guess that on some level she is, but it is painfully slow. Before transplant she was tiny, but like most babies would stand on our laps with our hands holding her upper body underneath her arms. She like the feeling of standing and "jumping". We never dreamed she would be almost 4 years old and not stand up. It honestly never, ever crossed our minds. We are confused and baffled by this.
Why doesn't she eat?
We knew from the very beginning of Ashley Kate's life that she was a "gut kid". Premature babies are usually, "gut" "lung" or "brain" kids. Some of them are a combination of two or three. Ash was classified as a "gut kid". We are very blessed that she did not struggle with brain or lung issues then(since transplant we have obviously become a chronic lung kid and a little of a brain kid too). From day 13 of her life when she experienced NEC(necrotizing entero colitis) we knew that she would struggle with eating. Some kids don't survive, some recover nicely, and some struggle. Ash obviously struggled with not only a premature under developed bowel, but one that never recovered and had to be transplanted. Even now with her newly transplanted bowel she struggles with absorption from multiple bouts of rejection. She has never learned to eat. She is never allowed to experience hunger. Her tummy is currently fed 24 hours a day so the idea of feeling like she needs to eat doesn't exist. She's always full. At times she has earned windows off of her feeding pump and during those times she's has learned to eat pureed foods, but currently while on TPN she has no windows of time off of the continuous feeding pump. Currently she eats nothing by mouth. Why she can't learn or hasn't learned to bite or chew food is beyond my understanding other than never really having an extended period of time to practice it between bouts of illness.
These are the question I have time to tackle again today. I don't mind you asking questions about Ash. Like I shared we ask them too. Daily. If not out loud to each other then in our prayers.
The most important thing I want you to know about Ashley Kate is that she is happy. She is loved. She is appreciated and wanted more than any child I know. Her daddy and I love her desperately. It is out of our love for her that we continue to work each and every day as hard as we do to find answers for her and solutions to make her life the best it can possibly be. I love her so very much and even though I shed many tears over this child, I feel more joy then I never was possible. God is still doing great things in her life and in ours through her struggles.
Thank you for asking. Your question don't hurt me they bless me. I'm blessed to know that your still here, still following, still caring and still loving this tiny girl. She is amazing and I love her so very, very much.
I married a ROCK STAR!
Exactly 16 years ago today I said "I do" to this, and I'm sure you can imagine just how fun this adventure has been! I love you Dave and I just wanted to let you know that "you and me is gonna be little buddies forever!" Happy Anniversary Bud! I love you.
P.S. I threw this picture in for those of you who've never met us in real life. It didn't take long to make that up there into this down here.
I cried myself to sleep last night. It happens, sometimes. The emotions that are wrapped up in this life we live are overwhelming at times. The tears can come from anywhere. Somewhere between intense sadness, fear or worry to extreme gratitude or the feeling of sincere happiness. Last night I cried because it hurt. My heart hurt. Again.
As Allie and I drove across town to soccer practice I asked her a question. "If Ash could have one wish granted what do you think she would wish for?" In less than a second she answered, "To just be a normal kid who never got sick." Ouch.
Later in the evening as I sat in the family room Blake came in and sat in his special spot. His baby sister lay sleeping on the rug. I asked him, "If Ash could have one wish granted what do you think she would wish for?" Honestly, in less than a second he answered, "To have all of this gone forever" and he motioned to the IV pole and the bags of fluids and pumps that hung there. Again, Ouch.
As Dave and I settled into our bed I lay there silently for a moment and asked, "Dave, if Ash could have one wish granted what do think she would wish for?" Instantly he answered, "To talk." It hurt. The tears began to fall from my eyes and roll down my cheeks. As I cried I though to myself, "If I could have one wish granted for her it would be that this time in our home would never end. Ever." Eventually I cried until I feel asleep.
A normal kid, a healthy little girl, without any pumps or tubes, who could talk and never have to leave her home again. One wish. Each of our hearts hold on to one for our baby gherkin. We all know what we wish for, but how will we ever know what she would wish for herself?
Yesterday I received a call from the Make a Wish foundation. They would like to grant Ashley Kate a wish. I didn't expect to hear from them. We honestly thought that since she couldn't talk and didn't have the ability to express in an interview what her wish would be that she would not be offered the opportunity. I guess we were wrong.
Unfortunately any of the things we all wish for Ash are a little out of their reach, but as I lay my head down last night I wished with all that is in me that somehow just one of them might come true. Any single one of them.
Tonight I tried to lay down and will myself to sleep. The rest of the house is. I willed my mind to slow down, my heart to quit pounding, and my eyes to close. It didn't happen. I lay there thinking about our wishes, our hopes, our dreams, our desires for our baby and then I realized that perhaps none of these things we wish for are what the Father wishes for her. What do I want more? Such a hard question. Of course I know what the right answer is. I could recite it to you, but is it what my heart wishes? When it comes down to it I do want His best for my daughter, but how do I stop the tears from coming and console my aching heart when I realize it might not be what I'd wish for her? I'm 31/2 years into her life and it hurts just as deeply today as it did the day she entered my heart and the moment I realized that His best wasn't going to be what I thought it should be.
I watched her today. I watched her struggle to stand up. I watched her snuggle under her quilt for a nap. I watched her color a picture with Allie. I watched her reach her tiny hands up to her daddy. I watched her throw a ball. I watched her watching Blake and saw the anticipation on her face as he got closer and closer to her. I watched her rub her sleepy eyes. I watched her fall asleep. One wish? Just one? That I could see her enjoy her life everyday for the rest of mine. That's what I wish.
Make a wish can't grant it, but I know the One who can.
See it in her coloring book? She did, and then she signed "apple tree". Amazing!
She is so, so smart and each day she blows me away by the things she "says". How I wish she had a voice, but I'm so very thankful she has her hands. They have opened up the world of communication to her and it may be slow going as she learns, but she's learning and "speaking" more and more each day. We are currently looking for help to teach her more effectively. If she has to depend on me then she'll be hurting because it takes me forever to use signs together to make a sentence. Honestly, its like speaking a foreign language and my brain is not communicating the sign to my hand as quickly as I need it to.
I've got lots to say and lots to share, but finding the time to do so is currently proving to be frustrating. Blake and Allie's schedules are going full force and add to that Ash and her appointment, evals, therapy, etc. and I'm out of time and exhausted at the end of each day. Happy, but tired.
I'm hoping to finish a post or two tonight or tomorrow. Until then, I just wanted to say hi and let you know that she is now signing two words consecutively. I'm just so proud!
His new passion
I may have told you guys once or twice how very much I love my kids. I really do. I not only love them because their my kids, but I love them because they are really cool people. There is nothing I would rather do then spend my time hanging with them. All three of them. Each one of them inspire me to be a better person each and every day because they deserve nothing less from me. I can't help but know how very blessed I am when I look at them.
Its no secret on this blog that my son loves baseball. Its no secret that because he loves baseball we all love baseball. If it were ping-pong(ok, he LOVES that too so much so that he watches championship clips on you-tube to learn new moves. I kid you not! Blake wants to be the best at everything he does. Even ping-pong!) we would love ping-pong, just because we love him. I just have to share with you guys that this week among all of his ball practices he has found a new passion that I'm afraid he and I are both loving almost as much as baseball. Its great! I'm talking really great, and for any of you moms out there who have 13 year old boys you might fall in love with them all over again if they picked up a passion for this too.
Would you like to know what it is? Are you sure you want to know?
Its LAUNDRY. He loves it. He did four loads last night. FOUR! and it only costs me 10cents per item(not including socks). Can you say BARGAIN! Before anyone tries to tell me how wrong this is let me explain.
Blake has his eye on an item. An expensive little item. For him this is unusual. Blake never wants anything. Not even on Christmas or his birthday can I get him to ask us for something. He always tells me, "Whats wrong with being content?" Nothing! I mean its awesome, except when struggling to bless him with a gift. So I know that he really, really would like this little gadget. He has been coming up with extra jobs to do around the house in order to earn some extra cash and save to purchase it himself. He didn't ask us to buy it for him, he wants to earn it himself. This kid has been working hard. Really hard. He has washed all our windows inside and out! I've never done that! Anyway, he discovered laundry after watching me fold load after load this week. He said, "I'll do that for you as one of my extra jobs." HUH? You'll do what? Laundry? My nemesis? For real? "If your serious I'll pay you 10cents per piece." That's what I told him.
Last night he was ecstatic! He was able to get four loads done before bedtime and earned $3.80. This kid is eating, drinking, and sleeping laundry. He's on a mission and the greatest thing is that the job never ends. He finds laundry around the house each and every day. He's cracking me up, not to mention making my life easier. His favorite thing about the laundry? The machines do all the work. According to my son, you spend a few minutes separating it, then you throw it in and while the machine works you hit baseballs, play ping pong, get a snack, check your e-mail, and then "presto" all you have to do is fold it and take it to every one's room. He loves this job!
So as I'm enjoying watching his excitement grow while counting the pieces in each load, I'm thinking to myself that the item he has his eye on may have a little competition. Just think how much he could earn if he had a shiny, new whirlpool set sitting side by side! I'm sure they make more efficient washers and dryers than what we currently have.
I would say that I need to go so I can throw in a load or two, but that wouldn't be nice of me to steal the kids job now would it.
Did I tell you that I love this kid? I really, really do.
Did I tell you how much I love being his mom? I really, really do.
Have a great day! Trish
"No offense Daddy..."
Its kind of a sad day for me. Dave leaves this afternoon on a four day business trip. That makes my heart sad. Sad because I hate to be here without him. Life is better when he walks in the door each day and when he doesn't...time just drags on. Night time is the worst for me when he's gone. I hear absolutely every single noise this old house of ours makes. I don't sleep well. I check on the kids a hundred times just to make sure their still in their beds. Its going to be a long, long weekend.
Last night I told Dave, "I'm so sad when your gone."
Allie heard me and said, "Yeah, me too."
"I can't believe your going to leave for four whole days, " I was trying to get Dave to show some sort of remorse about leaving me here with a full schedule and the pickle to get out to the baseball tournament and soccer fields. It wasn't working. He needs this trip and its important for the practice and the family and deep down inside I know that(although I'm still pouting about it). I just wish I were going too cause a walk along the beach would be great about now(yesterday he walked in and asked,"You wanna go with me?" "Ummmm...you know I do" Its just a little too late to be asking me that!")
Allie announced, "Well, No offense Daddy, BUT I would rather you leave for four days then Ashley have to go the hospital and leave for only two days. I mean I want you to be home, but I'm really sad and scared when Ashley has to leave home."
She's right. I think I agree. There's really nothing that can compare to the sadness and fear we all experience each and every time Ash has to leave home. So, were going to survive this LONG weekend and Dave will come home again Sunday evening. It will all be just fine.
To help pass the time(and make me totally exhausted) our weekend schedule includes:
Baseball practice from 2:30 -5(ish. Monday it lasted until around 6) tonight.
Soccer practice from 5:30-6:30 tonight.
Hitting practice after school tomorrow.
Bible study(for Blake) tomorrow night from 6:00-10:00.
Baseball game 8am Saturday morning.
Baseball game 1pm Saturday afternoon.
Soccer game 4pm Saturday afternoon. We're hoping she gets to play.
Tournament play all day Sunday.
Bible study(for Blake) Sunday evening.
Dave's arrival sometime Sunday evening.
On top of Dave being out of town so is his mom. So instead of having her help, his dad and grandma are going to try and pitch in with the pickle early Saturday morning so she doesn't have to leave the house at 6:30am. I hope things go well!
I suppose I should get started on this morning. I have to finish packing for Dave and then start rounding up practice uniforms, bat bags, catchers equipment, soccer balls, cleats, etc., etc. and get them loaded in the car. Here's hoping I don't forget anything. I honestly have no idea who does all this stuff for them when Ash and I are gone. I know it gets done somehow, but they aren't letting me in on their little secret. To be honest, I love all of this. It makes me tired, but its a happy, content, fulfilled kind of tired. You know what I mean? Life is really good and we are really blessed. Have a great day and if you don't here from me over the weekend then enjoy your weekend too. Take care. Trish
Ash slept all night in her own bed last night with no coughing, vomiting, or waking up! This would be her first successful night since arriving home(which means I slept all night except for changing fluids around 2am. Yeah us!). I'm really, really hoping she's on the mend for a good long stretch.
Look REAL close
Whats going on...
...around here today? Lots of things.
Our sickly baby? She's feeling better! Praise God! Smiley, happy, silly. Her old self is beginning to peek through for the first time in more months than I care to count. She's signing, playing, babbling, spitting, and eating. Yes, I said eating! She ate a jar of baby food today. So encouraging! Her feeds are up to 35ccs and her TPN was just turned down to run over 20 hours instead of 24. She hasn't coughed more than once in over 48 hours! I'm so thankful!
Allison Brooke? One of the two toughest girls I know(guess who the other one is). She did it again. I was determined not to allow her to be robbed of something she had waited so many years for. As the tears continued to roll down her face this afternoon I made up my mind. I took her without telling her what we were doing and as we passed by her eyes got teary and I said, "Lets do it, Al! Lets just do it again. I know your tough enough." Guess what? She did it. She sat there scared out of her mind and allowed them to pierce those ears again and I guaranteed her I would not allow anyone to remove them again. I went to practice tonight and spoke with her coach. I told him if he chose not to play her then so be it, but that her earrings would remain in her ears and that they were not to be taken out under any circumstance. She may play a little. She may play a lot. She may not play at all. I'm not sure what will happen, but I do know that she is one of the two best players that team has and if they choose not to put her on the field then that's their loss. Allie is so nervous because she is scared about not being allowed to play, and she LOVES soccer and is REALLY good at it(I'm not just saying that cause I'm her mom. I say it because she has worked hard at it for 13 seasons over the past 7 years). She doesn't want to miss any of the games, but this is only one season and we're gonna show up each week and take the field with those ears covered and if she is sidelined then she is, but if she's not then she'll be there to score goals for her team. I knew as soon as we walked into the house that I had made the right decision. She went straight to my room and retrieved her new jewelry holder and with a smile a mile wide hung it back up in her room. That smile told me that we did the right thing. Soccer or no soccer this was important to my daughter and that made it important to me.
Blake? He informed me today that he has a two line solo in the school play. That cracked us up! Everyone who knows my son knows that singing is not his strength. I'm serious when I tell you that he's awful! We laughed so hard at this announcement. Our only hope so as not to have him humiliated in front of the entire school? We think he has a tournament that weekend and will be out of town for both performances. They decided to double cast him just in case. Our fingers are crossed for that tournament to be waaaaaaay out of town! Just wait until I tell you what role he was cast in. Are you ready? A thorn. I can't even picture this. Whats worse than that? They made my beautiful Allie a thorn also. Unbelievable! A thorn! Blake is cracking up and Allie is trying not to cry. Other than the whole solo issue he's just been working hard each and every day of the week playing ball. He's got practice each day of the week except for Fridays and if were not on the road traveling then he's in the cage working out. Its a pretty great life for a kid who loves baseball as much as mine.
Me and Dave? Just keeping on keeping on. Its what we do. Day in and day out loving our life, our kids, our practice, and each other. Our anniversary is quickly approaching and we will be celebrating 16 years of marriage. I find that unbelievable! I really do. The time has flown by and I can't even remember my life before him. I really love that guy and I'm so very thankful for him.
Well, its time to tuck the pickle in bed. She's rolling around on the rug waiting for me to pick her up. Just wanted to touch base with you guys and let you know the goings on around her. Hope your families are well. Take care. Trish