Sunday, July 31, 2011

Grant snoozing & our first family photo... The 5 of us.

Grant - 10 days old.

The past 10 days have been pretty tough for our little guy.  Lots of tests, blood work, UV therapy, etc...  Currently, he is still in the NICU and is doing pretty well.  He is now feeding on a bottle (a whopping 10ml) every 3 hours.  Today they removed his nasal feeding tube and we are hoping that he will continue to eat and grow.  He now weighs 4lbs 2oz and his weight increases a little each day.  His belly button feeding tube has been removed and he is breathing 100% room air.
Today was a good day...  His sodium was back to normal and his acetosis was also improving.  They originally thought he may have Diabetes Insipitus (excessive thirst and pee-pee), but now they do not believe he has it, because his urine output is down to normal.  They put in a central line for meds, IV, and to draw blood.  Unfortunately, the line was placed in his neck which looks very uncomfortable.  I don't think he likes it much.  Cathy is able to hold him for a little while each day.
No updates from the cardioligists yet.  The last time we spoke, they were going to meet as a team and review the results of his tests so far and better define the treatment plan.  It still seems that surgery could be 2-3 months away.  We try desperately to know when he may come home, but no one seems to know for sure.  We want him to stay as long as he needs to, but it will be nice to have him home for a couple months prior to surgery.
We hope to know more next week.  For now, he is doing well.  The heart defect is still the major life threatening hurdle (long term) and the treatment plan is not clearly defined yet.  More to come...

Saturday, July 23, 2011

Report from the Cardiologist - 7/22/2011

Cathy is recovering nicely and the plan is for her to be discharged from the hospital today ending her 15 day stay.  Yesterday was a day of "exploration" to try to unravel the mystery of Grants heart defects.  He had a breathing tube put in yesterday only for the purposes of testing.  They needed to regulate his breathing as part of the CT angiogram.  We now finally have an official answer for Grant heart condition.  Grant has Tetralogy of Fallot with Pulmonary Atresia. In an nutshell, Grant does not have a typical pulmonary artery to take de-oxygenated blood to the lungs.  He has many small vessels called "collateral" doing this function for now. 
What does this mean?.?.?...  Grant will ultimately need surgery to correct this condition.  The plan for now let him grow for 2-3 months and then do another heart cath to determin IF surgery is possible.  That's right, IF.  This news was a devastating blow yesterday.  We have always known the risk of having any heart repair surgery, but yesterday we were told there is a possibility the defect can't be repaired surgically.  If surgery is indeed  possible, they will take all the collateral (small vessels) and use them to form a pulmonary artery.  Sounds simple enough, but the main factor is not the difficulty of the procedure, but rather how much material with which they have to work.  For now we will hope and pray he has enough material "collateral" to have the necessary surgery in 2-3 months.  Unfortunately, a transplant is not an option since he does not have a a pulmonary artery (he would have the same problem with a new heart).
Please don't take this new as all gloom and doom.  I can tell you he has a strong will to thrive and we will never give up on him.  The good news is no surgery for now he may come home in 2-3 weeks if he continues to do well in the NICU.  It will be nice to have my family (all 5 of us) under the same roof.
Thanks to all my family and freinds for your love and support.  You will never know how much it means to have such a strong support system.
Grant is at Le Bonheur in NICU room 402 for those that want to visit.  Sorry, no one under 18 allowed in the room (except siblings) and Grant!

Thursday, July 21, 2011

Happy Birthday Grant - 7/21/2011

What a long and amazing day! After a long sleepless night of contractions, Grant was finally born @ 7:37am. 4lbs 6oz and 17.5 inches long. Absolutely beautiful. He never needed a breathing tube or anything really. Grant is at Lebonheur and Cathy is at Methodist Germantown. More to come later after I talk to the Dr tomorrow.

Tuesday, July 12, 2011

Day 5 in the hospital... still pregnant.

   Cathy is still on bed rest at Methodist Germantown until she delivers.  She gets daily ultrasounds to check Grants condition.  He has scored very well on his BPP tests over the past 2 days (6 out of 8).  As long as Cathy and baby continue to do well, she will remain in the hospital on bed rest for at least 4 more weeks (maybe longer?)

Sunday, July 10, 2011

Day 3 at the hospital - No Labor

   We had another ultrasound Sat morning and Grant scored much better this time.  He pulled in a 6 out of 8 on his BPP (he lost points for his reduced amnio fluid - big surprise there ).  Apparently on his previous BBP, he was just being "lazy".  Last night Cathy was moved out of her Labor & Delivery room (still pregnant) into a normal room. She's no longer hooked up to an IV or fetal heart monitor which makes life much more comfortable for her.  She will stay here until delivery.  Dr. BK would like to wait until 34 weeks (4 more weeks) if possible before delivery.  Although her water broke on Friday, she never went into active labor, so they will watch and monitor her condition each day.  She will likely get an ultrasound each day and they will monitor the baby's heart rate 2 times per day.  We continue to wait patiently knowing that 30 weeks is way to early for Grant.  With the heart defects, he does not need the additional risk of being born 10 weeks early.

For those that are interested, Cathy is in room 423 in the Women's Pavillian at Germantown Methodist Hospital.  901-516-1363.

Friday, July 8, 2011

At the Hospital - 30 weeks 7/8/2011

   Today around 10:30am Cathy's water broke!  This was completely unexpected and VERY early.  We rushed to the hospital where they confirmed that her water indeed broke AND we were informed that Cathy would not leave the hospital until she delivers.  We spoke to Dr. BK this afternoon and he would like to wait until 34 weeks to deliver, but at a minimum he would like to give Grant 2 days of Antibiotics before delivery.  Although Cathy's water broke, she is not contracting and is not in active labor.  If she goes into labor, they will try to stop it at least for the next couple of days.  They did an ultrasound and a BPP.  He scored an unimpressive 2 out of 8 (8 is the best).  Dr BK will return in the morning to check-in and give us an update.  For now we wait on the fetal monitor.

Friday, July 1, 2011

Dr BK Appointment - Fetal Specialist (29 weeks + 2 days)

   Cathy's appointment with Dr. BK today went well.  Not very much new information to pass along, but we did have another ultrasound.  They checked for cleft lip and cleft pallet (very common to DiGeorge) and they did not see anything abnormal.  Cathy will get an ultrasound every 2 weeks to check for excess fluid around Grant's heart.  This could be a sign that his heart is having to work too hard and could mean early delivery.  No excess fluid found so far so we should be OK for now.  Our due date is Sept 14, but Dr. DK said we should plan for sometime between 9/7~9/14.
   In the meantime, we are about 4 weeks away from our 2nd appointment with Dr Joshi the pediatric cardiologist.  He doesn't know yet if the heart defect is Truncus Arteriosus or Tetralogy of Fallot, but hopefully at 34 weeks he will be able to tell.  Both conditions require open heart surgery after delivery so neither is good news.  We continue to learn as much as we can about DiGeorge Syndome (22q11.2 deletion).