It’s already Thursday! This week has literally melted away and the weekend is pushing in again. I LOVE weekends! 🙂 Especially ones when we can all be together.

Here’s a peek at what met us when we came home last weekend…

even her crib was specialized 🙂

it was wonderful to come home to a restocked fridge and clean house and folded laundry! I wish I had taken a photo of the mess we created when we unloaded our van just to make those of you who cleaned our house , Groan :0) It’s amazing how stuff accumulates at the hospital!

The last few days were busy trying to rearrange our tiny living quarters to accommodate more ‘Kierra equipment’ and meds.  We switched Pharmecies over the weekend also, which has cut our stress level(of getting her meds) in half so far 🙂 Our last Pharmacy had a bad habit of  being very much less then helpful when it came to quick perscriptions and sudden med changes. I was NOT AMUSED Friday night, coming home from the hospital and discovering NO ONE there would mix Kierra’s blood pressure medication for us because it was almost closing time.

I really truly try to give people the benefit of the doubt and second chances and all that forbearing hash 🙂  But that night I was MAD> my daughter NEEDED these meds first thing in the morning. I think they were on their 9th second chance with me. We didn’t go back again. Saturday morning, Steve went in search of another Pharmecy that does compounding and we have been much more satisfied! Here’s a thumbs up to Royer Pharmecy for all you locals 🙂

I cleaned up the house on Monday and did LOTS of laundry. The kiddos were so glad to be home!

I worked on making appointments and did paperwork

Kobe sprawled out in his favorite sleeping spot

 

She is just THRILLED to be out of the hospital!

Last night, I heard Kobe saying “KIIEERRAA!” In his amazed singsong voice. Followed with “uh”. I looked over to see him helping her play with her toy and she must have actually gotten a button pushed because he was so proud of her 🙂

On Tuesday, i loaded Kierra up and took her to Dupont for lab work. Kobe stayed with Linda Fisher and her girls. It seemed to take forever to get anything done that day:) On the way home, Kierra pulled her O2 off. I thought she might be OK without it for a few miles until I got off  the big highway, but she got whiter and whiter and her little chest started working too hard, so I pulled off the first available exit. Hmm. I got her O2 back on just fine, but it took about 20 minutes of back roads, down town driving, stop lights, and long waiting lines to get back on track again. I tried to remind myself that I have all day and that i can just relax and BREATHe and keep driving.  Easier said then done!

I was almost home at 5:30 PM when my phone rang. It was the nurse , telling me to hold Kierra’s injections for the next two doses since her levels were way too high. That was fine with me..holding her injections 🙂 but then she said I need to do repeat labs again tomorrow. Now that wasn’t so fine with me 🙂

So yesterday, we packed up again and this time, we only had to go to Lancaster, and Kobe went along. I missed him too much to leave him again 🙂 Her potassium was high which is dangerous, since it can shut your heart down in a moment if it goes sky high. Steve ran to the pharmecy again last night for another medication that should help those levels.

So today, we will see what her hematology Dr. has to say about those injections…Hopefully her levels are more stabilized!

I have a major love/ hate relationship with medications 🙂 They do their job, which I am VERY thankful for! but all the side effects cause more meds to counteract those and around and around and around we go 🙂 It’s a balancing act that requires lots of patience! I’m so thankful for Drs that do their best to keep her healthy! We are hoping to get rid of her Clonidone patch in a few weeks if her blood pressure levels stay solid.

And guess what? I haven’t had to cook a whole meal since we came home! Friends have been so kind in providing food for us! It’s a HUGE blessing! We would have been dining on cereal and eggs and who knows what most likely otherwise:)

Gina and her mom even froze beans for me. WOW! I am so blessed!

And I am savoring small pieces of the blueberry cream custard pie that Linda brought the other night. It’s actually a new kind of pie for me and we are loving it 🙂

To all of you who supported us in food, groceries, kind deeds, and prayers, THANKYOU! We appreciate it so much!

 

 

Her favorite dress from Grandma Pollyanna in Honduras.

Her hair done up in a braid.

Our little baby  is growing into a ‘for real’ little girl. Kierra was full of smiles and coos today. She slept in late. Wouldn’t that make anyone full of smiles and coos! 🙂 Child Life is a service here at the hospital that provides toys and activities for children in the hospital. They brought a big poster to hang on her window, and two brightly wrapped gifts for her. Baby Einstien books and a Leap Pad. Kierra LOVES the leap Pad. She can activate the noise etc, without having to push or concentrate on hitting one specific button. Since her movements are very uncontrolled and random, it’s the perfect toy for her!

Later in the day, Sadie and Sierra came with more gifts and yummers! a Caramel Frappe for me 😉 Kierra told them stories and we all had a good time. The respiratory therapist that came by gave us a very educational run down on salt water versus pond water drowning and submersion. He was a professional scuba diver as well, so his water knowledge was amazing! Kierra got an extra long session of chest therapy during that visit. She loved it! And fell asleep when they were ready to leave.

Sierra hung out here with us until  Christene, Joanna, and Gina came, bringing Kobe, a huge box of gifts from church friends, strawberry cake, and supplies for a grand party! We got to go out on the terrace and enjoy the twilight. What a special birthday! They sure know how to cheer a hospital stay up ! 🙂

Kobe demolished two pieces of cake :)So our three year old Darling is the Queen of the day 🙂 Happy Birthday, Kierra! We love you!

 

 

 

I never dreamed i would give my daughter injections. Mostly because I never knew anyone growing up who needed injections…except for the emergency eppiPen. ( and i seriously doubt that’s how to spell it but it looks more medical to spell it like that. HA!)

I grew up giving shots to cows and the occasional calf. I can still feel myself, muscles bunched and tense, ready for that quick fast stab that would pierce their tough skin and prepared at any moment to dodge their angry hoof.

This is picture is a little different. Alot different actually. We are talking about my little sweetheart here with unblemished little girl skin and tender flesh. We are talking a steady, quick hand that doesn’t jab or jerk.

When I heard they were starting her on Lovinox (my spelling? 🙂 injections, I nodded and said it’s fine and skipped right over that ‘a little longer then usual’ probing look from her Dr. It didn’t soak in that I would be the one administering it to my sweet daughter who can also be a moving target.

When I did realize my part in this twice a day prick, I just pushed it to the back of my mind in the ‘deal with you later’ category. Then the Dr. informed me I would need to learn to do this before discharge. I gamely smiled and said I was OK with that but I also added that I didn’t like it 🙂 Ha.

So there I was. And they handed me an orange and a couple of syringes and told me to have at it.

So I did. Over and over. I even made my orange jump around like a kicking child 🙂 until i was at least partially comfortable with it.

And just to assure you that this needle truly is nearly microscopically tiny 🙂

And for some reason, I actually was OK about it all. Maybe I’m just your typical imagining the worst mommy, but when I actually got down to business and DID it, it wasn’t so bad. A little like the breathing tube they had to put down her throat to sedate her last week. I was dreading it with all my heart, body, and spirit. But when it came to “Time”. i chose to stay and watch them. It wasn’t pretty or fun. But my daughter was sedated and didn’t feel it. Now I know how it’s done. And now  my imagination can quit doing crazy things to me. I’m not sure that I would ‘need’ or want to watch again because now I know.

So back to these injections….hopefully they won’t last forever. And it really wasn’t as bad as I thought it would be. Maybe it was because she was sleeping and kept right on. Thank God!

God is giving me injections of grace every couple hours too… I think it’s because of the prayers of His children! Thank you!

 

 

His mercies are new Every MORNING!

That’s the lovely text my kind friend sent me this morning. Great is HIS faithfulness! After our ‘scare’ yesterday with Kierra, I just especially LOVE that verse/song!

Kierra got very sick over night on Saturday night. Her heart rate was fast, she had a fever, she was working hard to breathe through lots of mucusy fluid. Listening to her chest with a stethoscope actually HURT your ears! She acted just like she does when she’s starting with pnemonia. Only this time, she was so extremely sleepy it was unreal. Her head lulled to the side when you picked her up and she flopped like a rag doll. Anyone who know Kierra , knows that this is totally abnormal! She didn’t TOUCH her oxygen canal and usually, we need to tape it on VERY WELL to keep it there!

They did a chest xray, put her on antibiotic and drew labs to check for any infection and also did a nasal wash to check for a viral infection.

Mark and Sadie brought lunch for us and stayed to visit awhile.They brought yummy sandwiches and the best blueberries ever! 🙂 Plus more including little prebagged cookies and popcorn, etc for Steve’s lunch. Totally thoughtful of them! Packing his own lunch is nonresistant  on Steve’s ‘things i like to do” list 🙂 although he doesn’tcomplain 🙂  We had a good couple of hours. Sadie and I bathed Kierra and did her hair and got her all spruced up 🙂

 

 

Kierra loves when Sadie comes! But today, she was so sleepy, she barely even smiled.

Thankfully, Praise God, her tests came back clear! One of the biggest culprets was an overdose of medication! Hmm…NOT good!!! One of the blood pressure meds has to be signed off by two nurses to ensure it’s the right amount etc. and somehow, it was still overdosed 😦 I was really glad they told us instead of just hiding the fact that someone goofed up! After they fixed that, she started coming around again. Opening her eyes, even making noises!!! And even if it took a long time for eyes to lose that drugged look, it was just good to see her responding again!

There’s a little coo and I love you!

Thankfully, the fluid started coming off her lungs with Lasix and she is breathing much easier and making happy noises again this morning. I’m guessing we will be in a few more days until they have her leveled out.

Maybe maybe Kobe will come tomorrow. I dreamed about his little arms around my neck and they wouldn’t let go. Bliss!

Thank you all for your prayers! Here’s wishing you ” the same Joy I (God) have and that your joy will be the fullest possible joy! ( John 15:11)

We have upgraded! And now we have a big bright room on the third floor of the A. I. Dupont Children’s Hospital! Wow! Aren’t we on the high rise 😉 We can even watch the construction on the new hospital even though it’s very dead beings it’s July 4th weekend and all. Something about the sunshine and quiet of this room after the crazy dark noisy ICU Gave me  Third Floor View Syndrome bawl as I will mention later.

As soon as we were out of ICU, Kierra went into a relaxed sleep and she has literally been sleeping ever since except when we moved her for her bath. and took her on a little walk.

She was so cuddly and clean and sweet after her bath I just wanted to cuddle her forever.

The findings of the MRV (similar to an MRI) showed some blood clots in her veins. They looked like old clots since they were beginning to calcify already which means there were other veins almost growing around the clots. They were also acting as a sort of sieve in the veins. The Dr.s gave us the option of trying to dislodge the clots. The procedure was plenty risky with no guarantee of success. Our good Dr. Strauss at The Clinic For Special Children gave us good advice and we decided to not go through the whole sedation and intubation process all over again, not to mention the vein procedure. They are giving her blood thinner to prevent more clots from forming and closely monitoring her BP meds. They want to watch her until at least Monday, then reevaluate her and decide if her levels are stable  enough to send her home.

She has been so extremely sleepy today! A week with out sunshine has taken the beautiful sunkiss out of her face but she is still the sweetest girly ever 🙂

We got to take her on a walk outside to a small enclosed court yard this afternoon. It was delightfully warm and the bubbling water sparkled in the afternoon light.

It’s so wonderful to have Steve here for the weekend! We went to the mall for a little while this morning. I had fun using a $10 reward card at Victoria’s Secret! Kierra slept the whole time we were gone.

So here was where that Third Floor Syndrome sneaked up on me. I should have been having a wonderful time…My Guy was here, We had a nice room, Kierra was out of PICU. But it seemed like the more blessed i got and the higher my blessings stacked up, the more I felt like grouching and crying.

It seemed so not fair to Kierra to leave her , lying pale and still in the hospital bed while we went out in the sunshine and rolled down the windows and opened the sunroof and cruised around town.  I had a good ‘bawl my eyes out’ , “I’m sick of this now’, ‘pity poor us’, ‘life is not fair’, ‘I’m tired of being brave’, ‘I miss Kobe’ cry before we came back.

Now I feel much better 🙂 So to the female population out there….here’s wishing you a good cry to clear your brain if that’s what you need today! 🙂

My husband reminded me of some key ingredients to happiness and joy.

#1. Let Go. Give it all to God and (#2) refuse to worry, and while you’re at it, (#3), relax! and quit holding yourself to imagined standards of what you think you should be ( you are free in Christ and nothing you DO can make you a ‘better person’ or get more credit scores in His eyes! and then,(#4) THINK HAPPY THOUGHTS.

So I know these are just scratching the surface of the Christain life, but the thing I’m holding onto today is that I AM FREE. I do not need to worry that I won’t be enough or that I need to try harder and get it together more. Although we can’t just ‘slide into heaven’ at the end of our days-

It’s because of the Great Love of My Father’s big tender strong heart that I’m going to sing and worship before Him some day! And RUN with my Sweetpea’s hand in mine!

“I praise You because You made me in an amazing and wonderful way.

What You have done is wonderful. I know this very well.

You saw my bones being formed as I took shape in my mother’s body. As I was put together, you saw my body as it was being formed.

All the days planned for me were written in Your book before I was one day old”. -psalm 139

This passage brings tears to my eyes. And is such a comfort to me…knowing that our Father really IS in control here!

Yesterday was rather traumatic with an MRV. It is similar to an MRI and Kierra  had to be sedated for it. Since her airways aren’t the greatest, they also put a breathing tube in for her. They asked me if I would like to leave the room while it was done. And at that moment I knew I wanted to stay. I would rather watch them do it and face my fear then to imagine it. My imagination can be vividly out of control when I let it 🙂 It went well and she was asleep when they inserted it, so that made me feel better!

Linda and Aleisha came to sit with me while we waited for her to get out. It was so kind of them and made the time go much faster. They brought me a wonderful strawberry rhubarb smoothie!

Thankfully getting her off the tune wasn’t a problem. She was fairly uncomfortable for awhile, until they gave her some meds, Then she relaxed and had a fairly good night.

The MRV was a better look at her veins to check for blood clots which may be causing her high blood pressure.  It is controlled right now, with an IV drip of medication, but she obviously needs to be weaned off of that before she can leave ICU.

She was still sleepy last night, so Steve and I both slept over at the Ronald McDonald house on a real bed. Her nurse was great and parked outside her door, so we felt comfortable leaving for a few hours. I feel so refreshed!

So if you would be kind enough t0 breath a prayer today…Pray for healing for our daughter…and knowledge for the Doctors to know what to do and patience and wisdom for us in making decisions and juggling our lives 🙂

By the way, Amy Kauffman gave me the BEST massage you can imagine last night! It is totally worth going to her ‘office’!!! I could even SEE better afterward 🙂

It’s so wonderful to know that our Creator never gets tired or weary….and His knowledge is unsearchable.

Praying you could feel His presence in any trying situation in your life right now!

Anita

 

 

Kierra was so thrilled to see her Daddy and brother over the weekend! Unfortunately, all my pictures of the weekend are on Steve’s laptop, so maybe I will post more later to give you a peek into our room 🙂

We had a great time with friends from Montana also! Meghan and her little family were here on Sunday before heading to Baltimore Sunday evening. I still have no idea what God had in mind 🙂 We had been looking forward to their visit for months since we never got to even give a proper good bye in Montana last year. Having friends pack up friends belongings and ship their life in boxes across the country feels more like death then ‘so long’…’see you later’… So we had been looking forward to our kiddos playing together, we ladies shopping, and reconnecting and i couldn’t wait to see their new little Kia! Didn’t we deserve a nice quiet low stress time together? It just didn’t really make sense. But if life would always make sense, we would have a pretty bland, predictive, mediocre ,faithless world.

So we enjoyed the moments we had together. Kierra was drowsier and a little more uncomfortable then I hoped she would be, but she woke up enough to show her eyes and enjoy the visitors. Kobe loved playing with Jas and Rach and ‘baby’ 🙂 as her called Kia.

It was a wonderful refreshing weekend and i feel like I have fresh courage for the week. Steve took off Monday also since they planned to do an MRA on Kierra which would require sedation again. I wasn’t feeling brave enough to go through that again with out him here,so he kindly took off. Of course, the plan changed then, and she only had to have a CT scan which required a few minutes of holding still versus a few hours!

My Dad and Mom stopped in for a few hours on their way home from a business trip to Lancaster. Mom stopped at our house and picked up more clothes for Kobe and cleaned out our fridge while Dad washed up the dishes 🙂 Bless them! They took Kobe with them to MD for a few days until we get a better idea of how long Kierra needs to be here. He was very happy to get out of this hospital and get away from the constant No Nos 🙂 Healthy one year olds and small hospital rooms do not mix well! So although I miss him so much, I’m glad he can run and play to his hearts content!

Kierra’s CT scan came back looking fairly well. They had a bunch  of different techs look at it and now they plan to schedule for an MRA tomorrow to get a better look at what is going on and if the kidneys could be effecting her high blood pressure. She has not been responding to her medications as well as they thought she would at all. Typical fiesty Kierra 🙂 She likes pick Drs brains alot 🙂 Today, they put her on a constant IV drip to help lower the numbers and so far they look much better although still not perfect. It takes several days for many of these blood pressure meds to actually start working in her system so when they hopefully start taking hold, she can come off the IV drip. We are still in ICU and plan to be until they get her levels under better control.Thankfully, we have been blessed with great Drs and nurses! That means the world!

Thank you all for your prayers!