Almost But Not Quite Yet

While Ryan was undergoing her sedated echo I busied myself with packing, fueling up my rig, and waiting for the discharge papers.  This all came to a screeching halt once the results of the echo came back. Apparently in addition to her high blood pressure, Ryan has decreased ventricular function.  As I understand it - her ''squeeze'' isn't exactly on.  Most likely this is due to her being on the by pass machine and the fact that her heart had to work so hard for so long to keep up with the blood flow.  Since the repair her heart doesn't have near the amount of blood to pump and it is figuring out how to slow down and it might take some time for everything to function smoothly.  So, the docs have given her a new med and they need to evaluate the response her body has to it and then adjust accordingly.  Was I disappointed?  A bit... I was ready to hit the road -  I miss my girls and want to be with them. But the reason we are here is for Ryan to get her health in the best position possible for a positive outcome and I appreciate the caution and thoroughness the doctors are using.  Our stay here has been good - the nursing staff has been very caring, personable and thoughtful and I've so enjoyed the one-on-one with Ryan . She has a great sense of humor and is such a lovey little thing. After the sedation wore off Ryan had another great day with lots of smiles and giggles, a couple of rides in her wagon and playing with her balloons.  There has also been a  shift in her diet and is now mainly consuming steamed rice and ice cream.  Whatever it takes! Here's to another night of constantly interrupted sleep, beeping monitors and the constant glow of  florescent lighting.

Recovery

Ryan is doing fantastic!  Friday evening  she had her catheter removed, two of the four IVs removed and was transferred from the picu to the third floor. She has spent much of the time being rocked by either myself or Lynn and snoozing. Today was another big day.  Ryan had the three pacer wires that were sewn into her chest removed as well as a third IV and last but certainly not least she had her chest tube removed.  Lynn chose to leave the room, but I needed to be there to hold her hand and comfort her.  Thankfully she was given  some morphine and when the tube was pulled out of her chest....it was nearly a foot long. I had no idea of the length and was a bit startled - older patients say it is the chest tubes that generate the most pain -I can see why!  Poor Jessica had three of them and I certainly didn't fully appreciate what she was going through at the time.  With much of the apparatus that was holding Ryan down removed, she was able to take a couple of rides around the hospital in a wagon, go outside for some fresh air, and she also had a bath.  She was in such good spirits she initiated a rousing game of ''toss the washcloth'' with her nurse and has been giving us lots of smiles.  Not to say she isn't feisty;  this evening with her dose of oral pain meds she had two of us holding her down, one administering the dose and she -bless her heart- was spitting furiously.  It took two doses and I'm hoping it was enough. 

A dear friend of mine lives near by in the fantastic neighborhood of Sugar House and lent us her place to crash at -which is so incredibly nice (no hotel rooms!)  she is working for several weeks back east this summer and we have the place to ourselves.  Lynn and I have been taking ''shifts'' with me staying the night with Ryan and then taking a long nap during the day when he comes to ''relieve'' me.  We spend the late afternoon/evenings together with Pip and it's working well.

I couldn't be more tickled with Ryan's progress - she truly is unbelievable.   The cardiac team is pleased thus far, however, they are concerned with her weight and dared to call Ryan ''scrawny''.  I prefer to think of her as ''dainty''.  Anyone and everyone has given us an (unsolicited) opinion on her weight and growth etc.  I understand it is of concern.  But she's had a huge hole in her heart that burned up a ton of calories.  She is from an impoverished area, in orphanage and foster care and has had her whole world turn upside down in the past three months.AND she is a picky eater.  Given all that... she has gained nearly 1.5 pounds with two hospital stays. We are working closely with our pediatrician and cardiologist at home  (who I trust). If she is still struggling in six months, we'll reevaluate. But until then...Tomorrow she is scheduled for an sedated echo and another chest x-ray providing a solid baseline to work from and to know where Ryan is at in her progress.  Hopefully we will be home soon!

In and Out of Surgery!

My sweet pea is out of surgery and doing well!!!

Ryan had no idea what was coming, but sitting on the floor in the pre-op waiting room with the anti-anxiety meds kicking in and blowing bubbles with mom, she couldn't have cared less.  Rumor has it she was extremely charming in the operating room (big shocker I know).  Before they sedated Ryan she was throwing her washcloth on the floor and exclaiming ''uh-oh!" then flashing her scrunchy face at everyone in the room.  Her surgeon has been AMAZING...he is so kind, caring, sincere. He said he couldn't be happier with how well she did in surgery, the hole in her heart is patched (he gave me the swatch remnant) and expects her recovery to go well. 

Ryan is  in the PICU (currently shift change and families are booted for an hour) is on oxygen to help with the hyper-tension and is also on some high blood pressure meds. She is running a low fever which I'm told is common after surgery. The docs are managing her pain with morphine and Tylenol.  She has been in and out of sleep, is quite scared, has tried to climb out of her crib twice and finally got to drink an ounce of water.

It's so hard to see my sweet girl scared and in pain and know there is nothing I can do to make it better.  For a mom that's the worst feeling in the world. AND I'm feeling relieved that she is on this side of things. The next couple of days are going to be long but I know it has to be done, that  it's just a moment of time which will soon pass and will be worth all the pain and struggle.

From the bottom of my heart - THANK YOU for all the prayers and emails and phone calls. Will check in again tomorrow!

Good News!!!

Ryan did well during the catheter procedure and was very mellow during recovery. The surgeon allowed her to leave the hospital and we are back here at headquarters. The entry site in her groin is extremely bruised, other than that, she is cruising around causing trouble as usual!

The results of the catheter gave us the news we wanted to hear....it's a go for surgery on Thursday morning!  The hole in her heart is located under her aortic valve and is approximately the size of a quarter.  Although this is considered a large VSD it is repairable.  Why it was so concerning for us was the amount of time her body has lived with the defect.  Typically (simplified) these defects are repaired here in the U.S. at around six months of age.  Since Ryan's has not been repaired her lungs have been flooded with blood and trying to keep up with the massive flow the lung arteries become muscular and after a period of time the damage is irreversible and therefore the defect is unrepairable.  The pressures in her heart and lungs looked fantastic and without question she can proceed with surgery. 

Ryan needs to be at the hospital at 7:00 a.m., surgery scheduled to begin at 8:30.

Today is a recovery day, and we are just going to lay low, maybe go for a walk or a drive and enjoy our time together.

Moving Forward

We will be on the road to Salt Lake in a few hours. Tomorrow Ryan will meet with the cardiologist, Tuesday she'll have the heart catheter procedure, Wednesday the cardiology team will meet to review the information and determine if Ryan is a candidate for surgery and we have a surgery slot scheduled for Thursday morning.   

Linda and Leroy are here once more to watch Jess and Kate and seem to have lots of fun planned.  Kate has been a bit blue the last couple of days and keeps telling me she'll miss me when we are gone.  The feeling is mutual.

It is strange to feel both trepidation and eagerness for the upcoming week.  Please keep our little punkin in your prayers, and perhaps, if you could, one for this mama's heart as well.  Thanks and I'll keep you posted.

Catching Up.

Well, the Thursday before Easter (after fighting a fever for nearly a week), Miss Ryan  landed herself in the hospital again - this time for pneumonia.  Three nights of IV antibiotics and she was good to go. It didn't help that Jess and Kate  were also sick with fevers and coughs etc. For a while we were touch and go but !!finally!! we are all healthy.  It has to be said that I suck at figuring out when to go to the doctor and when to not. Seems as though when I do go, I get the ''it's just a virus there is nothing we can do'' speech, or ''this is nothing to worry about, keep an eye on it and if anything changes...'', and of course, nothing ever does.  However, when I choose to NOT take my children the doctor (being sure symptoms indicate something minor)  it ends up being MRSA, heart failure, or pneumonia -sigh.

To sweeten the pot, the very same weekend Ryan was in the hospital I received a letter from the IRS stating we were under review and I needed to submit further documentation and evidence to support our tax filings.  This needed to be done 30 days from the date on the letter - which gave me about three weeks total to accomplish it. Fantastic timing!  Yeah, I ended up submitting 108  pages.  Not that I'm neurotic, but I am thorough.  The experience thus far has been less than thrilling. Hope my efforts were enough.

In the meantime I nearly broke the 5th commandment- incited by (you'll love this...wait for it...) my husband bringing home a puppy.  Seriously, he did. An error in judgement perhaps?  Impulse shopping?  A temporary lapse of sanity?  Whose to say.  Jessica and Kate were thrilled, Ryan was terrified, I was seething....emotions abounded.  ''Rosie'' is now settled, and (in all fairness) she is a fantastic dog. God knew.

Ryan is doing really well. She is happy, curious, funny, stubborn...she has a fantastic laugh that borders on screeching.  She can take that high pitch up a second octave - add a decibel or two, and it's quite clear she is not happy about something.  She is cuddle bug. I LOVE it when she burrows her little face into my neck.  She enjoys helping out, setting the table, putting away clothes, carrying a piece of mail.  When her sisters are being naughty mischievous, she gives them the eye, give me an impish grin and joins right in. She doesn't care to be too far from me.  Would take three baths a day if I let her. She is being more daring with trying new foods but doesn't have a taste for much unless it is satisfying her sweet tooth. 

Her transition has been so good. I think our greatest struggles have been with communication.  She is wanting to tell me something, and has almost a desperate, imploring look in her eye ''Why can't you understand me?'' and this leads to frustration and I feel such empathy for her in these moments. And at times it's frustrating for me as well. She seems a bit shy at trying new words and sounds, but is using: mama, daddy, bath, cookie, more and cracker.  Her English comprehension is increasing; she responds to simple requests such as to sit down, or take something to her sister and she understands and typically does it.  Ryan is the perfect little caboose for our family!

In the garden:  my spring flowers have done well this year.  The plum tree flowered up just gorgeous and thanks to my little loves I've enjoyed many bouquets of tulips, daffodils and lilacs. This week I have some poppies, although they don't last very long, and I spied the first opened rose just today.  The garden has been set out and I'm super excited about several perennials I planted last summer that are coming back quite strong.  Spring is always the best time in my yard....and end of summer. It's the middle part I need to work on.

On the nightstand: with all the craziness of aforementioned, not a lot of reading going on. However, a friend loaned me her audio book of Bossypants- and I really enjoy Tina Fae, and it was a bit crass, and I laughed a LOT and came to two realizations:  I need to laugh more, and, perhaps I might be taken with the audio book... depending.

Alive and Kicking!

I've been receiving some curt emails and comments from folks wanting an update and wondering why I haven't posted as well as wondering why I didn't post more often in China.  Sorry about the China posts, I was connecting through a VPN and I kept getting booted off which was very frustrating. As for being back home...well...been a bit busy. 

Our flight(s) home were uneventfully (thankfully), however, the little miss was not doing well at all.  She was horribly lethargic and diminished, and slept the majority of the time. And honestly, I was so worried.   We were welcomed home by family a friends,  after a warm reception at the airport we gathered our luggage and headed straight to the ER.  Ryan was given a breathing treatment, tested positive for RSV and was extremely dehydrated.  This was the beginning of our two day stay at the hospital.  I was exhausted after the 30+ hours of being awake and international travel.  I went home to cuddle and catch-up with Jess and Kate, and sleep while Lynn spent the night with Ryan.  The next day we swapped.  Ryan was getting fluids from an IV, but was not eating anything and of course, this was a concern given her health and weight.  In addition she was losing weight and was down to just 13 pounds. I was beside myself trying  to get my girl to eat something...anything. Finally after hours of offering food she ate a bit of white rice and a few MLs of formula.  So this past week was just a lot of nursing and coaxing of eating and nebulizer treatments and follow-up doctor appointments and trying to keep every ones hands washed and as healthy as possible. 

The following Friday night Lynn was vacuuming out the van (yep, he is a man with a van...) and Kate was inside the van, Jess outside and Jess opened the door and Kate came falling down crashing into her noggin. Of course I was  a wreck and sent them to the ER.  Long story short...she is ok.  I don't know what it is, but ever since I have been a mom...when one of my kids is hurt I go immediately to that dark place and assume the worst. I hate that.  My goal for this Friday?  To stay out of the ER.

I'm finally recovered from the jet-lag and time difference.  Have nearly all my laundry washed and belongings put away.  The girls are getting to know one another, my older two are so eager to help, and as Ryan becomes more comfortable in our home and in better health she is opening up and interacting more with her older sisters. So far the highlights have been watching all three girls being so silly, causing each other to giggle the way only little girls can and secondly my favorite is when all are bathed and in fresh jammies sound asleep in their beds.  What a feeling of contentment.  That's what I've been experiencing lately.  Joy and contentment. 

Today  Ryan was seen by her cardiologist and we have a plan.  If all goes well we will be heading to Children's Primary last week of April.  Once there Ryan will have a heart catheter to see if she is a candidate for surgery. We are hopeful.  Our doctor recalled that when she was contacted and told Ryan was in the hospital with RSV she nearly hit her knees and shared with us that RSV for heart kids is a nightmare and was shocked that Ryan was not in need of the NICU or to be intebated and was released in such a short amount of time. She said is was nothing short of the Divine. And we are so thankful.