Overwhelmed by your love...

This is only half of what she has gotten so far. Olivia has been really busy playing with all of her presents & munching on all of the snacks ( and so have we haha). I'm really anxious about tomorrow as it will be the first lab result (@8:30am) since we left the hospital on Friday. Praying for good results so she continues to be home with us and her toys :)

Home sweet home.

The first night/day back home felt great. Olivia finally got a full night of sleep. Having an all new med list & routine was a bit challenging at times but I believe we were able to get everything done as directed by her doctor. Also her body is not adjusted to the change & to the new meds. side effects ( nausea,headache & loose stool) so eating & drinking has been hard for her which makes it even harder for us to push her to eat & drink all day :(. She has to drink over 1 Liter of liquids during the day & almost 1L overnight ( thank goodness for her feeding tube because it has been a life saver). I just put her to bed right now & I'm praying for another quiet & relaxing night :).

Waiting to be discharged.

Friday. 6:00 p.m Today we've been anticipating going home & the time can't come fast enough. We're ready to start our new life. Olivia has been wearing her coat for the past 2 hrs & is really anxious to finally sleep in her own room & play with her toys. Our discharge nurse should be here within the next hour.

Special people...

These are some special people that made Olivia's stay at the hospital better... Her amazing nephrologist that has always been an advocate for her, and stayed right next to Livi during her whole surgical procedure. She is the best dr. that God could've chosen for her. Dr.Steinke always treated & cared for Olivia like she was her own child... This little girl got spoiled everyday... ( pic 2, is Kelly from Child Life which also requested to be by Olivia's side during her surgery. At the end of the procedure she shared with us that because of Olivia she now knows how to better help these kids cope with procedures & understand what they go through ... So touching.) Also I can't thank enough all the medical staff at the DeVos Children's hospital & the amazing surgeons that really change these kids life Forever

Great news.

Yesterday dr.Steinke started a going home test by substituting IV fluids with pediasure & pedialite and still manage a good kidney function... So far everything has gone as planned & the change has been successful which means... Home Tomorrow :) We're in disbelief right now, feeling so humbled & blessed by the love of our GOD to finally see the light at the end of this tunnel. The kidney toxins ( creatinine) right now is at 0.65 ( 0.3-0.5 is where they want her to be at) so we're very close in seeing the new kidney at 100% function. So for now instead of staying here & waiting for all these changes the doctors feel very confident at us taking her home & still doing every 4 hrs Vidals( blood pressure, temp, calculation of intake & output fluid amount). Also we need to bring her at the hospital everyday by 8:30 so they can make the necessary daily med changes depending from the lab results. Also as of yesterday Olivia has been walking on her own ( even tho still weak) so I believe we no longer have to take her to MaryFreeBed which most likely will be confirmed once we meet physical therapy at 2:00 pm today. Again, thank you all for everything you have done for us, especially the constant prayers that have shown over & over the power of all the believers coming together to confirm how Amazing our GOD is and how much HE loves us... Unconditionally.

Long day...

A better rest of the day.

Things started changing around 2:00pm. Olivia's output was stable enough that her nephrologist was comfortable at removing the catheter finally by 3:00 pm...Phew... She was also able to take a 2 hr nap that seemed to energize her enough to want to take 2 steps & take a ride around the floor :). That was a huge progress. Another good change was the med situation. To help with her nausea they broke the meds that were causing nausea to 4 X day instead of 2x a day. She was able to have some milk, chocolate, a couple bites of chicken & the much needed water :). Ready for bed, praying she gets some rest tonight.

Restless night...

Last night was a little rough on Olivia. She developed pain & discomfort by her catheter. It was very intense to where she couldn't even rest or lay in one position. I tried everything, from patting her clean to rinsing multiple times until 4:00am. I got scared cuz we also found blood residue on her diaper but we couldn't determine where it was coming from ( front or back). She tried to sleep from 4:30 to 6:00 until they started the morning assessment and woke her up to stand on the scale which is so challenging right now cuz she has lost the strength on her legs ( they're talking about sending her to MaryFreeBed for PT) I'm hoping she can get some rest today to make up for the night. There's nothing worse than having to tell your child:" I'm sorry honey, there is nothing mama can do to help you..."

Out of the ICU

Olivia is finally out of the ICU down to the 7th floor ( pediatric nephrology).This afternoon has been pretty comfortable for her. The 3:00 o clock dose of morphine really helped her & she looks the most comfortable she has been yet. She also drank about 4oz of water & ate 5 french fries :)... One step at a time. Very hopeful for tomorrow to be a better day.

Eating & meds...

The goal for Olivia at this point is to be off IV fluids & start eating a normal diet which will help her lungs getting a break too ( since they're just getting cleared from the extra fluids). The struggle for her now is combatting nausea even more than before. Due to rejection she is in a lot of extra meds & two of them are chemo ones which are making her very sick. So far they've added two extra anti-nausea meds but with no success. So even tho she is feeling good from the kidney stand point she is not able to eat or have any energy at all to even sit up. So please pray that the doctors find a solution to treat her nausea so she can fully enjoy the benefits of her new kidney.

Great progress

Olivia had a better night than yesterday. She was able to drink about 4 oz of water by mouth & as 4:00 am she has been breathing on her own... Praise The Lord. She has been stable enough all morning that they're thinking to move her to a reg floor(kidney floor) this afternoon. Feeling so blessed right now :).

Sunday ( a.m)

Overnight wasn't very eventful. She was able to fall asleep comfortably around 11:30 last night so the nurses told us that we could go & get some rest too.Apparently all night she has been asking for strawberry shake haha. This morning the doctors are very pleased with the way she looks. Her body has washed out most of the toxins with the creatinine @ 1.23 from 2.60 ( normal range 0.3-0.6). We're very happy right now to see Olivia more alert & able to talk even tho she says she has a " frog" voice. Thank you again for all the love, support & prayers that everyone has been sending our way.

She's awake

They finally took Olivia off the ventilator. She is doing much better right now & she's only on a small dose of oxygen. Praise the LORD

The past two days

Saturday.

Things have been up & down these past couple of days. They have kept Olivia pretty sedated & paralyzed so her lungs could get a break. The talk right now is to lower her sedation & hopefully to have her start breathing on her own. She has been waking up here & there trying to talk & move which is not fun to watch cuz you feel like you're not doing what a parent is suppose to, which is comforting your baby and right now we feel like there is nothing we can do to help. On the positive note she has been able to take from 14-20 breaths per minute for the past hour. Please continue to pray for her recovery. We are so thankful & overwhelmed by the love & support that everyone has shown us. Very blessed to have you all as part of our life.

Post op. ( 03/27/2014. PM)

As I mentioned early it was quite a delay on " getting the room ready" & the real reason was Olivia had stopped breathing for a minute after the surgery due to the high sedation :( From that point on things worsen for her. At first she started to froth blood out of her nose to what we were told it can happen sometimes. This went on for an hr, than the frothy blood started coming out of her mouth. We were really getting concerned at this point as we saw our daughter fighting the oxygen mask off of her face. It was hard to watch & to find out that what was actually going on was her gasping for air. Due to the high IV fluid intake for the surgery & the kidney not working at 100% at this point ( since frozen for transportation sometimes it can take up to 48 hrs to gain full function) Olivia's extra fluid that her body couldn't output had all gone into her lungs. At that point chaos started. They did a chest X-ray and it didn't look good. Her lungs were filled with blood ( pulmonary edema) & it was so bad that had they to come up with an emergency plan or she was gonna go in to cardiac arrest if this continued. The panic, the fear, the tears, the anger was overwhelming us as we had gone 36 hrs with no sleep at this point . All I could do is pray and ask our family & friends to do a chain of prayers so GOD can help our little girl which was struggling for her life. Thankfully GOD has chosen great doctors for Olivia ( especially her nephrologist. She is The BEST). The respiratory therapy team & all her staff rushed into the room & their goal was to put the breathing tube ASAP back on to open up her lungs and treat the situation before it became life threatening. It was soooo horrible. They tried to intubate her for quite a while with no success bc her trachea was so full of fluids so they couldn't see very well & she kept dropping on her sets & kept stop breathing ( they had to beg her once). Finally after what felt like 30 min ( didn't time it) they were able to put the ventilator tube in, sedated her & with an every 30 min plan/med change they were successful at stabilizing her ( around 11:00 pm that night). GOD thank you for everything you have done for us. & thank you for choosing amazing doctors & medical staff that want the best for our little girl.

Surgery day ( 03/27/2014)

Surgery day (03/27/2014) At 5:00am thursday morning after a restless night we started the most anticipated day for us, since 2009... The kidney transplant surgery for Olivia. The night before around 8:00-8:30 dr. Steinke came & gave us the amazing news that Olivia not only was getting one of those kidneys but once they compared the ages she was the youngest in their region which bumped her to 1st place on the list ( meaning that our dr. had also THE 1-st. choice on the best out of the two kidneys) Once they rolled her down to the pre-op room things moved very quick. Olivia was really scared, anxious & upset and that made the process more painful. All that lasted for another half an hr and the déjà-vu moment that always tears our heart out was here... Kissed her beautiful face, smelled her hair, squeezed her tight into our chests and let her go... Again... Beside the screaming voice inside of me I could hear Peter, trying to talk chocking between his tears:" -How many times do I have to hand my little girl away... Inside of you,you can feel & hear your heart exploding to pieces, splashing all over your brain,numbing it as you struggle to breath while you're drowning from the wells of tears accumulated from this pain... As you sit in the waiting room you stare at the TV & no matter what's on,all you can decipher is 2135 ( her surgery procedure update number)... You stand there in a room full of supporting people but you feel so weak that even looking around seems like a chore because your tears & heartache has taken every strength away from you & you're covered in fear... Fear that stinks of weakness, little faith and purely just being a human. Than I remember my GOD. I didn't have to speak to HIM, didn't have to beg, I didn't even have to look up...all I did was, I thought of my GOD & a big smile came on my face, a fresh breath of relief & I could feel the army of his angels surrounding all of us. I felt GOD's comfort reminding me that HE is right there with me ALWAYS & I had to fear not cuz HIS love was bigger than my fear, Bigger than my human nature, HE is THE GOD that gave me the gift of motherhood, the gift of life & my trust was all I need to feel his protection over my little girl that was laying on that surgery table in the other room. The actual surgery started at 7:00 am & was supposed to last until around 11:00 am. GOD had picked out the perfect team to work on Olivia. We felt blessed seeing all of them take such good care of her. Overall everything went smoothly until they had to close her up & they hit a bit of a challenge due to the big kidney size not fitting in her belly. They tried for over an hr and finally had to call the head surgeon which thankfully was able to move all her organs up & around & finally making enough space for them to close her up... Finally after 7 hrs Olivia was all done with a new kidney thanks to the GIFT of LIFE that decided to donate al the organs to save lives, just like it did our little girl's. My heart goes out to the family of this deceased donor & I pray that GOD can bring them peace & strength during this difficult time. Thing had gone pretty smoothly until now. They told us to go up to the peds ICU to see Liv. For some reason they were having a hard time to "get everything ready" which took another 2-3 hrs. Around 4:00 pm we were able to finally see our baby... Laying there... in discomfort trying to take the oxygen mask off, fighting with the nurses :). -Livi, sweetheart mama & daddy is here. Oh I am so proud of you honey. You are so strong. Mama loves you so much -maaaaaaaaaa -oh baby don't try to talk cuz your voice is so raspy & I know you're tired. Please don't fight the mask off your face. -maaa. I. Just. - What baby. - the mask. Just. Doesn't look ... Good on meeee -oh honey, haha. You're beautiful Only Olivia can still find a way to turn every situation into a funny & happy one haha. I love that little girl with every once of my body. Thank you Olivia for teaching me everyday how beautiful life is & how not to take anything for granted.

The transplant time has arrived.

March 26, 2014 11:11 am. Incoming call... -Hello, Mrs Harrison? -Yes, this is.. -Hi, this is Eric from nephrology. We got a kidney for Olivia... Hello, are you there? - What? Are you serious? She is getting a kidney? You're sure? How many are ahead of her... Are you sure? - Yes Mrs. Harrison. She is number 2 on the list but there are 2 kidneys & both kids are getting one. You need to bring Olivia to the hospital now, and admit her to Helen Devos.  -Oh my God, thank you, thank you, thank you...  (Tears roll down. Body shakes. Legs give out. Can't talk. Can't breathe; but I have to...I have to talk...have to call Peter... Oh my gosh Peter. How do I say it so it doesn't hit him the same way it hit me. I Dial his number with my shaking fingers...) From that point on all I remember is running thru traffic lights to get Olivia as soon as we could to the hospital... She was not happy. She wasn't prepared; nobody was. She kept crying hard & repeating..."but mama, you told me no Dr. appointments today...but you promised me". Heartbreak ...but in the midst of all this, one thing is sure; God had the perfect time and a perfect plan for Livi. We just had to stop, accept our pain, shut the scary thoughts out, and listen to His voice, for His call, His work, and His Love.  When we got to the hospital, we were told that Olivia would be 2nd on the list. There was a chance that the child who was 1st could use both (in case their body rejected one of them)...we were told 7:00 p.m was when everything would be finalized. They got Olivia's IV started so they could start the lab work for the final match around 2:00 pm.  Waiting for seven a clock was even harder than getting the phone call; is was hard to imagine this ending this with..."Well....maybe we'll get it next time". At this point, we're numb. Face. Body. Frozen.  4:00...5:00...6:00...7:00... Nothing...  Here I sit, in the middle of a room full of encouraging family & friends; I write. 

I love you...

The unknown wait before the transplant...

As you all know Olivia's kidney transplant was postponed until this coming spring. Peter & I were able ( along with the doctors) to keep her "stable" without dialysis this past yr which by the way has been amazing. 2013 was the first yr to where Olivia & us felt somewhat "normal". She was able to see all of her cousins ( some for the first time), most of her aunts & uncles, she was able to go for the first time to VBS at our church which was unreal cuz she didn't get sick one day even though she was in the mids of 200 kids for a week. She has been able to eat by mouth mostly everything ( still on the pump at night), been able to enjoy swimming, dancing, playing & even had her cousins over for sleepovers multiple times... She has really created beautiful memories this past yr & we're so thankful for that. Things have gotten a bit hectic this past month (dec-jan). In the beginning of Dec Olivia's tests came back really bad which made the dr. fear that the surgery was gonna be before Christmas but GOD as always showed everyone that HE is in control. She did have to spend Dec23-rd in ER but so thankful we were able to spend Christmas at home. Olivia was born with only 17% of kidney function (only one working & the other burned by all the cysts).  For anybody that is in dialysis has that kidney function drop to 15%. Once you reach 15% your body can't function without dialysis due to all of the toxins created in your body from everything we eat & drink that can't be flushed out since the kidneys ( filter of our body) don't have enough or any strength to work. As of this month Olivia is at 15% but somehow, miraculously, she is still managing to stay without dialysis and the doctors give credit to Peter & I for being so involved in her care but we know that really is just GOD that is showing us how much He loves us and that HE will always pick us up & protect us from the unknown... This unknown journey has been hard for us but it's getting even harder now that we're so close to the big change that we're expecting to gain from this transplant. They tell us that is going to be worse before it gets better but our hearts have gotten so weak from all the ups & downs, from all the pain that we've witness our little girl go through... It just hurts too much to even think for what's ahead of us cuz we. just. don't. know. Also last month,Livi's dr. presented to us the idea of her maybe to be put on the deceased donor list in hopes of getting a better match than Peter ( he's 50% match). In order for her to be a candidate we had to get clearance from more than 12 doctors & specialist which meant 2-4 hour appt. with every single one of them on top of labs and testings done weekly ( this doesn't include Peter's cuz he has to go through the same clearance). The stress of just getting them scheduled on top of taking in all the new info that each & every one has to offer & than trying to explain to a 4 yr old that it's going to. be.okay...it is overwhelming. You hear all of these horrible things that your child is suppose to go through like she hasn't been through enough just makes you give up sometimes & just shut-down cuz you feel your brain overheating since your heart has weakened so much & you can't let that lead your thoughts...    On the positive note Olivia only has 3 more specialist appt. left & on Feb 19-th she should be on the deceased waiting list for a better match... I'm really struggling with the process of the deceased donor's list & am retaining myself from not bursting in tears because Livi's gift of life will be another family's loss. For sure I pray for a better match which will give Livi better, longer life but I'm struggling to be happy knowing that another family will loose a loved one... i can’t even write that without chocking up… But yet, it is so humbling to know that in the middle of their tragedy these families are donating their organs to help other people live.... All these said once Olivia has been put on the list the surgery can happen within the next 24 hrs. So once the donor has passed away they have 24 hr to use that kidney or the next person on the list will get it. There is so many factors involved in to this waiting period cuz Olivia cannot be even slightly sick nor on dialysis to accept that kidney during those 24hr. ( if Livi is sick & they start her immunosuppressant meds needed for her body not to reject the new kidney, without catching it on time it can be life threatening to her). So, Please pray for a prefect match & that she stays healthy during this flu season. We’re so thankful & blessed to be surrounded by such amazing family,friends & church and we know the power of prayers because of you all… thank you…

Reminder of my thankfulness ...

As we're getting closer to Olivia's transplant I find myself reading more & more about her condition. I know that GOD makes everything happen for a reason... But I'm human & find myself sometimes still looking for answers. Why has this happened to my baby, how could I/we have prevented it, how can I fix it all... Uuuufffff As I was reading more about her condition this morning (5:00 am to be exact) I came across the article explaining her kidney dysplasia condition that said... Quote: "A child with kidney dysplasia affecting both kidneys may not survive outside the womb. If the child does survive birth, early dialysis and kidney transplant will be needed. http://kidney.niddk.nih.gov/kudiseases/pubs/kidneydysplasia/ Reading that line is what helps Peter & I to forget about what Olivia has & concentrate to what we're blessed with. Her chances of survival were low to none & once she survived birth the doctors gave her 2 yrs tops before the transplant but GOD, our Heavenly Father was the one calling the shots right there next to us, not the dr., not us. He had a plan and still does and all I need is sometimes to be reminded that GOD is in Controll. What a peaceful thought that is to me... That thought gives me the extra breath I need to take when my emotions take over, when my heart feels like it's being stomped on when I hear/see Livi's struggles to just be a normal kid, my GOD is the extra breath I need to take when I'm needed to be strong & be my husband's support... Olivia is so amazing, so strong, so brave, full of love & life and that's what I need to be ThANFUL for and enjoy every second like it's the last one cuz GOD has blessed us with her. I need to stop searching for answers cuz Olivia is GOD's gift and I/ we did nothing to deserve her. GOD loves us so much that HE decided to bless us with the most precious gift in the world... Our Olivia Grace 💝

Fun at the children's museum :)

Mackinaw trip !

Capture moments... (From 4-th bday party to fishing in July)

A full year of updates ...

In the beginning of this year, Olivia & Peter started the transplant journey. It took months of bi-weekly blood drawing but at least we have some great results to start with. They are both a MATCH. Olivia's blood didn't reject Peter's and also so far she tested with zero antibodies which is Amazing news. ( on a normal child you want them to have antibodies to fight viruses, bacteria etc so they built a strong immune system but on a transplant patient any antibody will make it that much harder for the body to accept a new organ( foreign ) without fighting it) Another important test that still needs to be done is the MANO one. Olivia is negative but if Peter tests positive than will give her a 60% higher risk of cancer :- [ { it's all a side effect of the anti rejection meds that she has to take for the rest of her life) Until last month Livi was scheduled to have the surgery this Sept but the past two months have been pretty stable which is encouraging us to postpone the surgery until spring. No date has been set yet due to all of the testing & clearance that both Peter & Livi has to get before surgery ( Cardiologist, urologist, opthomologist, infection dr. , psychologist,2 of the surgeons, nephrologist ... all i remember for now) It is a lot of doctor appointments that takes time from our already busy schedule. Olivia is still on daily growth hormone shots which have been a blessing that shows in her height (39" now from 31" that she started last June) and also she has been getting bi-weekly hemoglobin buster shots to help her make red blood cell which are killed by the enormous toxin amount that her body has due to her kidney failure. She continues to be monitored monthly by her dr. visits & labs. Again this past 2 months have been pretty stable which makes us so thankful to be able to use all this diff meds to help her condition & prolong the surgery time to where she is a bit bigger & stronger to handle it all. The new kidney will be placed in her abdominal area. Her dr. and us have decided to wait on the nephroctomy ( removal of native kidney) surgery until after the transplant. They will wait 2 weeks to see if the old kidney will continue to produce urine than they would have to remove it to protect the new one from drying out & failing. Unless they do the secondary surgery ( adds 2 months hospital recovery) Livi should be out in 4-6 weeks. Afterwords she has to be seen for blood draw (labs)3 x weekly for three months & 2-1 times for another 6 months. She isn't allowed to be around people for 6 months ( beside @ the hospital for labs) due to her immune system & antibodies. Soooo. Beside all the hurt and trauma if everything goes well and she takes care of her new kidney we're looking at abt 15-18 yrs :) She still has to make sure to intake a LOT of fluid which will decide on her g-tube button removal & kidney's life. The dr. said that her patients sometimes can't do it until teenagers when they realize the importance of the water intake for the kidney life-span but I believe in Olivia cuz she is so smart & understands already the severity of her situation. She is my little hero 💛💛💛.