Duke Visit..Long Day

We left this morning at 6:30 am for our trek to Duke Eye Care Center. 

Kaitlyn spent the night with my parents and thankfully so because she is sick and running a low grade fever. Dennis woke up feeling poorly but thought it was just heartburn (acid reflux). As we drove to Duke he seemed to get worse. 

We arrive at the eye center at 8am just in time for our 8:15 appointment. Dennis is now looking pale and in pain. He is complaining of being cold. I am thinking...this isn't good. 

Dr. Sharon Freedman sees us almost immediately to dilate Kyleigh's eyes with eyedrops. She didn't seem to mind the drops. However, she was a hungry little girl. So while the drops did their work and Dr. Freedman contacted Women's Hospital for discharge papers, we went to a waiting area to feed Kyleigh. I say "we" loosely as by now Dennis is out of commission and can barely walk and carry bags at the same time. It was pitiful.

Soon, Dr. Freedman calls us back in to the office exam room and looks at her eyes. She confirms that the cataracts are definitely covering the entire lens on both eyes. Then she conducts the ultrasound on her eyes. We watched eagerly awaiting to hear if she could see the "stalk" that would show if she had PHPV (the eye disorder Kaitlyn had) or not. Thank God...no STALK...NO PHPV!!!!!!! 

So we are only dealing with cataract removal. PRAISE GOD for small blessings!

It was determined that we should have surgery on the left eye first as it is the largest of the two eyes. However, the surgery has been postponed until Jan 28th. The thought is because she technically should be 1 day old today and not 3 weeks. So they want to give her until she is 3 weeks corrected age old which is 6 weeks old until the operation. Also, we are starting with the left eye because it is the largest of the two in hopes that the right eye has a little more time to increase in size. The small size of the eye and cornea poses a small risk for the surgery and makes it difficult to remove the cataracts. There are other risks involved such as glaucoma, retinal detachment, and others but we will pray that none of these come to pass. 

Afterwards we headed up to the pre-op floor to complete paperwork on Kyleigh in case the surgery remained on the calendar for Wednesday. At this appointment they decided we should see a Duke Cardiologists immediately to get clearance for anesthesia. So an appointment was made for today at 2pm. 

Needless to say I am starving, Kyleigh is tired, and Dennis is looking worse by the minute. We head to the cafe' where I feed Kyleigh and grab a small bowl of pasta to eat. I try to get Dennis to eat some crackers and drink water but it was not helping him at all. 

We headed to the cardiology appointment early at 12:30 in hopes they would take us back early so we could go home. They took us back around 1pm and started the "triage" part of the visit by weighing Kyleigh and taking her measurements and blood pressure. She now weighs 6 lb 6 oz. Yippee!!! This part of the appointment took until 2pm because the blood pressure cuff for newborns wouldn't connect to the machine correctly...go figure. Then we headed to a room for them to do an EKG on her heart. She was so good for this part of the appointment with all of the sticker like cords hooked onto her body. She remained calm and quiet during this procedure...thanks partly to a very calm and nice nurse. The same nurse gave Dennis a mask to wear so that he wouldn't contaminate anyone else (especially Kyleigh). 

The doctor (Dr. Campbell) and took her history and ordered the echocardiogram to be done today. Unfortunately, we couldn't proceed to the echocardiogram right away because Kyleigh was ready to eat again and it required me to have privacy for pumping. Luckily they provided us with a room (consult room) so that I could pump with the door locked and then feed Kyleigh. Next we headed to the echocardiogram. Kyleigh was happy at first with her belly full. But by the end of the procedure I was holding her still at the legs and keeping the pacifier in her mouth while shushing her in the ear- EXHAUSTING. Meanwhile, Dennis is laid up on the couch in the consult room with a blanket and pillow. Poor thing. 

We return to the consult room to wait for the doctor to come tell us the results. Dennis is so ready to go home but dreading the fact we are more than an hour from home. 

Dr. Campbell comes in and gives us reassuring news about her heart. Although she doesn't have the PFO (newborn hole in the heart that is considered normal and closes soon after birth), the hole she does have won't need any action taken right now. It is a atrial septum defect and 1 of 3 things may happen by her 1st birthday. 

1- it may still close on it's on (unlikely because her hole is large)

2- it may get smaller and pose no concern at all and they will just monitor her frequently

3- it will remain large and they will monitor her closely until the age where surgery is considered best option (right before entering kindergarten) 

So, that is one more surgery we can cross of the list for now and just pray that the hole in between her upper chambers closes by her 1st birthday or reduces in size so that it never causes her problems. 

All of this to say, her first eye surgery is Jan 28th and the second one is Feb 4th. The cleft palate appointment is the 21st of Jan. Please continue to keep us in your prayers. Especially pray for quick healing of the stomach sickness that Dennis is experiencing and for Kaitlyn. Pray that Kyleigh and I do not get sick. Kyleigh is extremely fussy tonight and I'm hoping it is just because she is overly tired from the day. Tomorrow we go to the hearing screening and Genetic Doctor appointment. Look for an update on that tomorrow night or Wed morning. 

Uh...oh...baby crying..gotta go now!