Adotpion

I wasn't sure how to title this post.  The following post are about our adoption (4th time) of Addie.  A beautiful 2 (just turned 3) year old.  We knew she has special needs.  She was listed a special focus child because she had more then one special need.  She has repaired CHD, cleft lip repaired , cleft pallet needs to be and seizure activity.  Ive tried to post about how difficult it can be when you travel half way around the world and are given a very sick child.  That once you get home you find our her needs are sooooooo much more then you imagined. How the whole family is affected and struggle with little sleep, hospital stays, and no normalcy. How your heart brakes for this tiny little girl who you just want to make better.  How scary it all was in China and how some families might have walked away. 

"Regular Days"

So today is one week out of the hospital.  We give Addie meds 3 times a day.  It will be back down to two after her current antibiotic is done.  She will be on a low dose of antibiotic until we figure out the throwing up but that is only once a day and mixed with her other meds.  We got the call yesterday that they can put in her ear tubes tomorrow.  The thing that is going to suck is they scheduled her for 1 pm so no food after 5:30 am.  Now we usually wouldn't have take that time but we are still trying to figure out why she is screams like she is in pain at all hours of the day and night for no reason.  And she doesn't respond to sounds so they will test her hearing while she is sedated.  They will also run a test to make sure her urine isn't spilling into her kidneys and blood work for genetics.  All while sedated for 5th time (I think) since we've had her.  So no regular days for us yet.

Back in the hospital

So the only time I find to blog is when we are on day 5 of a hospital stay.  So here is a catch up since we have been home.  Three days after arriving home Addie had her first seizure.  I could write tons about this but too tired.  That was our first admittance into CHAD.  It was a one nighter (yea!!) they ran test figured out meds sent us home.  That was April 13th she then started having seizures again on the 18th and continued on until the 27 almost daily and needing her rescue drug, Diazepam given rectally.  Meds were added and increased.  May 4th we were admitted again to DHMC for vomiting.  This was just what we had seen in China..  Very long story here if you want to hear it let me know and Ill add more BUT quick version after MANY test we found she had malrotation of the intestines. They go in fix that remove appendix YEA after 10 days we go home!!  Every things fixed?  Keep reading.  Seizures start again tweak meds. Now I don't want to make it seem like we take the seizures lightly.  They SUCK and its horrible to watch her have them but until all her other "issues" are under control they are a part of her. So Doing good.  Lots of Doctor appointments its just a way of life right now she is getting ready for her first birthday party at home!  We celebrate on her birthday but her party was going to be on Saturday. Friday night 5/29 she throws up her meds before bed she throws up her night bottle and starts to throw up ever 15min after that.  Just like we saws in China JUST like we saw before her operation.  WHY!!! We cant get her seizure meds and oh she now has high blood pressure so she is on bp meds too into her so we head off to the ER.  Here is a side note: Its just sad when you have a bag packed for you and your husband to take with you because every ER and most DR visits turn into being admitted (insert tear here).  Sure enough by the time we get there she has two seizures in the ER and we give her here rescue meds. And she is admitted.  We are now on day 5 this is what we know.  She has Klebsiella a type of UTI that is not common in children.  She is resistant to many antibiotics and the first one while they waited for the bacteria to grow didn't do a thing so they now have her on the correct antibiotic.   She has Cyclic vomiting syndrome.  She is giving anti nausea medication that the original dosage was way to low and when the GI doctor stopped by was increased and not sure how that's working because she still is throwing up.  Ken and I are tired and we miss our other children.  But this isn't about us its about this beautiful baby girl we brought home almost 2 months ago that just cant catch a break.  We will just get to see the real her start to poke through and wham she's back in the hospital again.  It all comes without warning.  She is happy playing and it just hits her.  More test have been ordered, more sedations on top of all we are still waiting on with here

Home

The thing about leaving children at home is they still need you.  They want to be part of the trip and Face Time with you and talk.  You want to be home with them you want to look like everything is great and that you are having a good time.  You want to have your newly added smiling and waving hi to their new siblings through the computer.  That's not what happens when you have a very sick child.  When you barely see the outside of your hotel room. When you have had to doctor a child back to health in a County where you don't speak the language. Getting off the plane in Logan and seeing 8 smiling faces was the 2nd best part of the trip! It was fabulous to be home!!

Guangzhou April 1-10 2015

So much has happened since then it is all mashed together in my mind.  When the plane landed Addie started throwing up.  We weren't expecting this so we were covered in puke, she was covered in puke and we were being stared at.  We let everyone go by and Ken asked the flight attendant  is she has a plastic bag. NO. So we make our way off the plane to find out we are holding up the bus to take us to the terminal.  Lots of angry eyes.  We get on very crowed and Addie is throwing up again.  Get to the airport getting our bags (throwing up still).  Meet our guide (Mommy stares down some 20 something boys laughing at us!!!)  We have to change her in some seating section and head to the van.  We are a wreck she is a wreck and having dry heaves now.  We think motion sickness first time flying.  We get to the hotel and just want to rest.  Now we have had her 3 days and she hasn't pooped and they wouldn't answer my question "when did she poop last?" Ken gets his swim suit on and decides to get in the bath with her.  She poops this white/grey/little brown very hard poop.  Not looking good.  She doesn't eat much and cant keep it down.  Now here is where time gets blurry. She is still not able to keep anything down. We have her "physical" she is dehydrated she has to have blood drawn she is puking in the car/vans we travel in she is a limp noodle.  I ask on the WACAP fb page for advice where to take her. On Friday we call our guide early and say we NEED to take her to a clinic that was recommended to us.  We go and meet Dr Peggy (we loved Dr Peggy!!!) The look in her eyes when she meet us :( sadness, disgust, not really sure maybe angry.  We  find out Addie has a bacterial infection and is dehydrated.  She gives us meds AND her cell number and says call me this weekend! One question that sticks in my mind she asked was "Did you know she was like this?" Well yes and no. We knew she was small and had seizures and the cleft. We were not expecting no seizure meds and bag of oxygen and a very sick child.  Oh Dr Peggy also gives us a rescue med if she has a seizure.  OK off we go thinking its the infection and now that she has had the antibiotic shot and meds she is going to get better! Right..... wrong. We start feeding her with a medicine syringe that was with the baby Tylenol we had brought we tried water, Gatorade, coconut water, and formula.  Nothing but water stays down and if we go over 20ml she throws up.  Saturday night Ken wakes me up because he has gotten up to feed Addie and she is unresponsive.  We decide that if we were home we would bring her to the ER so that is what we are going to do.  We call our guide (who by the way was wonderful) and she brings us to a Women and Children's Hospital ER.  That was an experience I don't ever need to relive.  They give us rehydration fluid and cough syrup because she keeps coughing up phlegm and tell us to feed her every half hour.   Ken and I take shifts and start giving her 5ml up to 20 ml feeding her every 15min to 30min.  Monday we go back to the Clinic to have her blood tested to see if the infecting is gone and it has cleared up.  We are still feeding her with the syringe because she still wont take the bottle but she is showing a little more life, looking at us and staying awake more hours.  By Wednesday she is finally eating with her bottle and we get some smiles and she LAUGHS.  We were so happy!   She stops throwing up and we are hoping for a good flight home.  We manage to get out and walk around Shaiman the last two days we were there.  We spent the almost the entire time in our hotel room taking shifts feeding Addie and eating breakfast alone.  Not the trip we had planned.  We love the island and had looked forward to spending time there.  So happy to be going home. 

Keeping Her....

I want to talk a little more about this.  Never could we ever leave a child.  Even one who was sick and had/has so many issues we were not aware of.  Ken and I talk about how first time parents or unexperienced parents would have been SCARED.  That they probably would have disrupted or at least talked it over with their agency.  Adopting is not for the weak.  Adopting a special needs/special focus child is not something to go into lightly.  The needs these children have can be so far more then an operation.  The cost can be soooooo much more then the adoption cost.  This is my opinion and please don't feel the need to let me know if you disagree.  If you are adopting no matter WHAT the child you meet is yours just like when you have a baby YOU DONT GIVE THEM BACK!!! Could it disrupt your whole family dynamics and life YES.  Doctor bills and time YES. May they not grow into what you had imagined YES. But they will grow into where love, patience, and time brings them. All children deserve a family.