Thursday, June 23, 2011

Being a Mom

is hard work, but it is the best work in the WORLD!  But I do believe it takes a village to raise a child.  God has richly blessed me with a large village.  So many family, friends, church family, and co-workers have helped us in so many different ways; prayer, giving to adoption costs, throwing showers, cleaning house, yard work, meals, babysitting, encouraging words, prayer, organizing, copying, faxing, mailing, and the list goes on and on.  I still haven't gotten all the thank you cards written   (sorry about that, I am working on them as I can :)  But thank you for EVERYTHING you have and are doing for us. We are deeply humbled and grateful.


Elena has had a good evening.  She has been more smiley and happy.  She has been drinking more from her special bottle and is now off  of her IV medication.  If she continues drinking at the pace we may get out of here sooner rather than later.  :)

Ezra and Juliana came up for a visit this evening.  Juliana was so happy and cooing so much.  I'm pretty sure she is also just a little bit heavier than she was 2 days ago:)  She is doing so well.  The cardiologist said this week after examination and an EKG, chest X-Ray, and echocardiogram, that "that is a good looking surgery'.  He was pleased with the results thus far.  She still has elevated pressure in her lungs but still a big improvement from what it was.  He said it just takes time.  He is leaving her on oxygen and her medication for now, but thinks it won't be long.


Wednesday, June 22, 2011

Elena's Surgery

Elena had surgery this morning to repair her cleft palate.  Everything went well.  We will be in the hospital for approximately 5 days (until she is off of IV pain medication and is drinking okay).  She so far has had 2 apple juices and part of a grape juice.  She has to drink from a special bottle with a tube instead of a nipple.  I put the tube in her mouth and gently squeeze.  She has her elbows splinted (has knocked them off 5 times so far today) and an IV in her foot.  She is sleeping in her car seat or snuggled in my arms.  She has generally been pretty calm.  We have only had a few episodes of being upset for an extended period of time.  Most of this is when she tries to leap out of my arms to lay on her belly to rest and I can't let her lay down. 

Thank you for all your prayers for our family.  I have felt so need these past few months with funding the adoption and now just support in handling sick babies and hospital stays.  I look forward to moving beyond these surgeries to a more "normal" routine.

Sunday, June 19, 2011

Busy Week Ahead

I am really going to try to update more often.  We have been busy and no sign of a slowdown in sight.  Juliana seems to be recovering well.  She is still on oxygen at home, but hopefully we will be off of it soon.  Please continue to pray for her as she continues to recover.

This week is going to be busy.  I am having a cavity filled Monday. Juliana sees her cardiologist on Tuesday.  Hopefully Elena will see ENT for followup from tubes on Tuesday also.  And the BIG day is Wednesday.  Elena will have surgery on her cleft palate.  This will be difficult for all of us.  Obviously on her as she spends approx. 5 days in the hospital, sleeping in her car seat (to remain upright), elbows splinted for 3 weeks (to keep her hands and other random things out of her mouth), and a liquid diet for I'm not sure how long. 
It will be difficult for me to entrust the care of Juliana to others while I stay with Elena.  Juliana is still recovering from her surgery and still fragile.  I am praying Elena's stay is shorter so that I can be with both of them.
Hopefully after this summer of surgeries, we will be all well and ready to start created a new normal routine.

Monday, June 13, 2011

Home Again

I went up on Friday to visit Kelly and Juliana.  The latest I had heard was that there was a chance that they would go home next Thursday. When I arrived, Kelly told me that the doctors had said that they might go home this weekend!  This was most excellent news!

The news turned out to be accurate.  We spent most of the day Sunday waiting to be discharged. We had all the luggage packed up and ready to go and waited... and waited... and waited.  We were very much hoping that the doctors wouldn't come back and say "oops, we changed our minds".  We did get to leave in the late afternoon.  The drive from Nashville to Chattanooga was very smooth. 

Juliana is still on oxygen, but only a very little amount.  She eats so much faster now.  She babbles more and is a lot more active.  Her incision is healing very nicely.  We had been told to expect three weeks in the hospital - one week in ICU and then two in a room.  We are thrilled that she has healed so fast and is leaving the hospital after only nine days.  We would like to say "thank you" to all the people who have been praying for her recovery.

It is good to be home.  It was good to sleep in our own bed again - Kelly was very sore from sleeping on the bed in the hospital room. It is great to have our little Juliana free from all of her tubes and lines and monitors.  It is so good to be able to hold her (albeit very carefully) and have her go to sleep in my arms.

Wednesday, June 8, 2011

Moving on up

to the 6th floor!   We have moved. No fever so far today!  Nothing on culture so far today!  Eating better!  Things are looking up!

Pneuma NOOOO!

Juliana got her breathing tube taken out today, she is now on oxygen through the nose.  She also got her PA line taken out (basically a big IV in her right wrist).  We are hoping tomorrow they will take out her central line and chest tube.  Those are some BIG goals.  Last night she had a fever so they drew some cultures but won't have the result until tomorrow.  She spiked again while I was eating dinner back at the Ronald McDonald House.  They went ahead and gave her some antibiotics until they get those cultures back.  She is pretty congested.  We are just hoping and praying she doesn't have pneumonia.  I don't think she does but know it is a possibility.  She was more awake today but no smiles :(  She went most of the day without pain meds.  But she was getting pretty fussy this evening and they gave her some.  Nothing we did would make her happy.  I can't wait to hold her again.  And I can't wait until she is smiling again.  I think it is harder now seeing her even without all the extra tubes and wires she has had.  She is now awake and frustrated because she can't cough up the stuff in her lungs so we basically have to make her gag so she will cough.  The doctor seems encouraged by how she is looking.  She will probably at least for the time being, go home on Sildenafil (Viagra) and maybe some Lasix.  But that is still too far in the future to know.  Thank you all for your support!


Monday, June 6, 2011

Operation - Day 3

Juliana started the day off with amazingly awesome heart and lung pressures.  Everyone was very impressed.  As the day wore on, though, her lung pressures went back up to where they do not need to be (about half of her systemic pressure).

They removed the chemical paralysis today.  After several hours, she was moving a little.  She is on morphine for pain and several other drugs for sedation.  She opened her eyes three different times and looked out a little.  We had about three seconds of "eyes open" time throughout the day.  Not much, but it is good to see her beautiful blue eyes again.

Otherwise there were no changes in her condition.

Saturday, June 4, 2011

Operation - Day 2

Juliana has stayed in about the same condition today.  She is still chemically paralyzed and still sedated.  They have removed a couple tubes, added a couple of medicines, and changed some medicines out for different ones.  She is on morphine now for pain management.  She did not react to having her nose suctioned or her gums brushed (yesterday - even though she had no signs of consciousness, her heart rate and blood pressure would spike when getting suctioned or brushed - she hates these things).

It is hard to see our little one covered in so many tubes and not be able to hold her or squeeze her.  It is hard to call her name and she not answer, to touch her face or hair and feel no response.  Only the steady rhythm of her chest from the ventilator and the steady pulsing of all the numbers on the screen show her to be alive. 

We lose track of time in this place.  What day is it?  Time passes slowly.  In many ways it feels like "Groundhog Day" again.

Friday, June 3, 2011

Operation - Day 1

Our surgery was originally scheduled for yesterday.  However, it was pushed to today because a more critical child came in and the surgeon spent most of the day in the operating room.  In that case, we didn't want Juliana being operated on by a surgeon who has been hard at work all day and no longer fresh.

The hardest part about today was the very beginning. We had heard all the terrible ways the surgery could go wrong.  Juliana was all smiling and sticking her tongue out and babbling.    We kissed our adorable little bubble-blowing girl goodbye.  She does not know what is coming.  We know that they are going to saw her chest in half and split her open like a lobster.  The nurses take her away, and we were left wondering if we will ever see our little girl again. 

The wait was not bad.  We were kept informed about every hour as the operation progressed.  The surgery took about four hours, then she was transferred to the Pediatric Critical Care Unit (PCCU). 

The nurses tried to prepare us for how she would look.  They showed us pictures of other children who had been through this surgery.  We finally were allowed to visit Juliana.  Kelly and I were surprised that she looked as good as she did.  We were both expecting to see far worse.  Yes, Juliana is a mess of tubing and sensors and wires.  She is on a ventilator, on at least a dozen intravenous medicines to control her heart and lungs, and is wired to at least ten different sensors giving real-time updates on her condition.  However - both Kelly and I have seen children in so much more dangerous conditions; seeing Julina like this was not shocking or surprising to us - we knew she had heart problems before we adopted her.  For what it's worth, there are newborns on this wing with a lot more tubing and wires and medicines. 

Juliana is chemically paralyzed and sedated.  If her numbers improve (lung pressure vs. blood pressure is the biggie) the doctors will start the process of waking her back up tomorrow night. 

We suspect that Juliana will be mad.  We hope that she will be glad to see us.