Tuesday, October 27, 2009

The emotional roller coaster continues....

Today's appointment was NOT good. First, the doctors are concerned about Averi's heart. The output artery looks narrow. We are being referred to a Pediatric Cardiologist, and will be adding him to our team of doctors for Averi. Dr. McLean did say that it could be the way the ultrasound is viewing the artery because her heart is pushed all the way to the right side. So we wait to see what the cardiologist says.

Second, my blood sugars were high at this visit. So, I am retaking the glucose test. I forgot to get that lab slip before we left so I will have to remember to call in the morning.

Third, the amniotic fluid has increased in volume. My blood sugar could be causing this, however it is common with CDH babies since they may not be able to process the fluid normally with their organs all scrambled in the chest cavity.

I need to read more about all of this, but I think I will wait for the glucose test results and the cardiologist to give us some definate answers. I have learned that reading this without knowing more specifically what is going on with us is depressing since there is so much information.

I am stressed out, frustrated, overwhelmed, sad, and feel like I need a time out. My grandma is in the hospital, Ian is sick again, grades just arrived for Alex (not the best), all seemed to pile up on me emotionally today. I feel like a failure because I can't seem to keep it together.

I would like to end on a positive note. Averi weighs 4 lbs. 12 oz. and her heart is functioning normally, and her heartbeat is strong. I am 32 weeks and 4 days and all of Averi's measurements are right on track or measure a little further along. The doctors at Sac MFM are awesome and Dr. McLean was so gracious today.

I do have some prayer requests.

That God will continue to teach me through this, and give me peace and strength.

That the doctors will figure out exactly what is going on with my blood sugars, and the amniotic fluid so we know what to expect, look for, and plan as we are in the home stretch.

That Averi's heart will continue to function normally and provide her body with the support it needs to sustain her. That the pediatric cardiologist will confirm or rule out an abnormality in Averi's artery so we can plan accordingly.

Thank you all for your continued prayers and support.

Monday, October 5, 2009

Ob/Gyn check and NICU tour

Ok so OB/GYN check went well. The doctor was so kind and answered ALL of my questions (I had a new list for this appointment). I love him he is great! Averi's heartbeat was strong, we will have an ultrasound on our next visit in 2 weeks, didn't get one today. I gained 2 pounds again, ugh. I am trying really hard not to gain any weight. My blood pressure was good, and Glucose test came back normal. The doctor put us on the calendar for induction on December 14th, barring any issues or distress on Averi. Our doctor will be at UC Davis that week, yay! He briefly went over the Ronald McDonald house and Kiwani's house option and also said that there were hotels very close. He said that they will probably do the repair at or around 10 days which puts us right at Christmas Eve. So we may be spending Christmas in the waiting room of the hospital waiting for Averi to get out of surgery. The kids are aware of this and are being very understanding. We are going to go with the flow this year, and play it by ear.

The NICU consult and tour went very well. The Charge Nurse was so informative and answered all of our questions with straight answers. They have a room that they use primarily for CDH babies. There was a CDH baby in that room so we couldn't go in. We just kind of peeked in and got a quick look at the doorway. They have 2 ECMO machines in NICU and 3 in PICU and 2 on standby/backup, but that they machines can be moved between the 2 areas quickliy if need be. They like to try and use High Frequency Ventilators (HFV) and Nitric Oxide before using ECMO. They use earplugs on the baby for both ECMO and HFV. They have an awesome L&D with high tech infant beds with the equipment on them that they will need for Averi in the room. They have a breast pumping room were they supply all you need and you can even wheel the pumps to the rooms. The lobby of the NICU has WiFi so Kevin can work there. They a parent room with lockers and such and a parent sleeping room. Averi will have her own nurse, the ratio is 1:1. We met one of the Neonatalogists and he actually asked me questions. He asked me how I was feeling and how things were going. Then he said he was wishing us the best and he would see us soon. Overall the visit was just amazing and gave me so much more peace.

It looks like the insurance thing has all been worked out. It will cost us a little more but we get to keep the same awesome plan! Thank you Jesus! Ok I will add more if I can think of it. Your continued prayers are so very appreciated!