36 weeks...

There isn't much new to report. As the doctor on Thursday said, we are just counting down until the induction date. Baby Elijah is continuing to grow and it looks like he weights 5lbs 12 oz which is a good size for his gestational age. I sat down with our nurse and we discussed some of what would happen when he is born. Because he is a single ventrical baby, they will most likely transfer him to CHLA very quickly. I will have to pump and CHLA will store the milk for when he can finally eat.

There are so many unknowns. After he has his surgery, his chest will be left open and he will be intubated.  They can't tell me how long either will continue, it all depends on how he heals and tolerates everything. She said it could take few weeks or it could take a month. During that time he will be sedated and pain free. At least that is comforting. We will meet with the neonatal doctors next week to discuss their plan for him. They will be the team of doctors that will be in the delivery room to take care of Elijah immediately after birth.  We are still waiting for the insurance to grant us the MRI and the final echo. I have no idea why they are stalling. Hopefully it will be approved soon and we can move forward. The more information they have now, the better and quicker they can treat Elijah later.

Here we go!

We finally had our first appointments with the USC Fetal and Maternal Health Institute on Thursday. It was a very, very long day. We had an incredibly long wait and had to see two different doctors. All in all, things are looking good. Elijah is growing just as he should and we are now looking at an induction date of March 14th to deliver on March 15th. I believe that they will then schedule his surgery for the following Monday. It's all starting to become very real and scary. Dion has faith that everything will work out and things are going to fall into place. I have always been a positive person but I am really struggling with this one. I am petrified that things are not going to go well. I suppose we all just have to live in the moment and not worry about things we can't control.  I have to go to weekly doctors appointments and see several doctors each time. They want me to have an MRI so that they can look at baby Elijah's brain. They said that this is standard with heart babies but I can't help but worry about what it could possibly mean. Again, I need to live in the moment and not in the possibilities.

33 Weeks and Counting

So after a very long fight with our insurance company, we finally have appointments set up for next week with CHLA Fetal and Maternal Health for all of my doctor appointments. This has been such a trying time.  I now understand why people get frustrated with insurance companies.

I am nervous to find out how Elijah is doing and if he is gaining enough weight. Hopefully, we will be able to schedule a tentative induction date at that appointment.  As March gets closer, I find myself getting more emotional. The thought of not even getting to hold him, having him whisked away to the NICU, and possibly not seeing him for days is terrifying. The idea of your tiny little baby going in for open heart surgery is mind numbing to say the least. I am just scared and worried. I fear for Noah and all of the uncertainty this will all bring. I can't imagine the emotions that he will feel when his world gets turned upside down. There is just so much uncertainty and I struggle to find peace in the unknown.

Doctors Appointments

Not a huge update today. I saw both my specialist and my OB this week. We will begin to transfer my care to Hollywood Pres next week and get the ball rolling. It looks like baby Elijah weighs 2 1/2 pounds which is great and right on track. I am measuring a week ahead as well. One of my big fears is that he won't get enough nutrition and won't be big enough for surgery. So far, this has not been the case. The doctor at Hollywood Pres said that he would be small because of his heart issue so that just added to my fear. Only time will tell!

I hope everyone has a happy and healthy new year!

It's CHLA!

I hope everyone had a great holiday! So I told myself we would make our decision by Christmas and we have decided to go with Children's Hospital. We both believe that Elijah will get the best care there. My only frustration with the whole thing is that I will have to deliver him at Hollywood Pres. They are incredibly old school and have you transfer to five different rooms throughout the process of delivery. NOT GOOD. They treat the birthing process like some major surgical/medical event instead of a natural process. However, the NICU is run by all CHLA personnel and the positives outweigh the negatives. I still have to tell my OB and the high risk doctor we have been seeing, along with the doctors at UCLA.  I still really like the people there and "breaking up" with them will be very hard. So that is where we are now. We have several doctors appointments this week so I will update later this week.

Consult at CHLA

I would consider myself a fairly successful woman. I have a wonderful family and a good career. I am typically the type to be in control of things in my life. This situation is completely uncontrollable. I find myself obsessing over the little things, the tiny things that I might be able to control, to have some sort of say in. The more I obsess, the more I realize that even those things are out of my control. How on earth does a person function in such a state of unknown?

We went to CHLA last Thursday to meet with a top-notch surgeon and to look at their facility. We have been receiving our care from UCLA up until this point. UCLA has been incredibly supportive and has taken a great deal of time and deliberation in dealing with all of our needs and questions. I have felt very blessed. However, many people have told me and the rankings show that CHLA has a better heart program. So, last week we drove to LA and took a look. The facility is great. They have an entire floor dedicated to children with heart issues. All of the personnel on that floor have experience with heart defects. Once the baby is done with the ICU, they have a step-down unit just for cardiac kids. They also have an inter-stage clinic that helps with follow up care between surgeries.

All of this is well and good. However, the people there just did not engage with us the way the people at UCLA did. This isn't to say that they are bad people. They just didn't connect with us to the same extent. It felt like we were a part of a system, not an individual. I have no doubt they are capable at CHLA, however my comfort zone is with UCLA. This has been the most difficult decision I have ever made and I feel like it may just be the first of many. If I take the emotions out of it, I think the decision points very clearly to CHLA. But I am having such a difficult time separating myself from the emotions. Not to mention, if we choose CHLA, I will have to deliver at the hospital across the street and baby Elijah will be transported to CHLA. Dion will be with the baby at CHLA, I will be across the street, and Noah will be in Northridge. It just feels like it will be a very fractured time during a very fragile time.

We have to make a decision before Christmas, so I guess I still have a few more weeks to obsess.

If it's not one thing... it's another!

We have been fighting with our insurance in order to go and meet with the doctors at Children's Hospital. We originally had an appointment with them set for before Thanksgiving. However, our insurance was refusing to cover the cost of the appointment. Thanks to the ladies at both Children's Hospital and UCLA, we were finally able to get it covered and have an appointment set for Thursday. I am looking forward to seeing what the specialists there have to say.

On another note, I saw the high risk doctor yesterday. I have to continue to see him every three weeks in order to monitor little Elijah's growth. Because he only has a two umbilical artery instead of three, he is at risk for not getting enough nutrients and his growth being effected. On a good note, he weighed a whopping 1.9 pounds yesterday and is growing well. I can't believe how excited I am about this. After doing some research, it seems like he is a little larger than most at this point. Hopefully it continues. 

My doctor also informed me that I have a septum in my uterus. I have no idea what this means.  When I questioned him about this, he said that they would have to continue to monitor me and that sometimes babies refused to flip and are breech because of this condition.  He showed me on the ultrasound and it looked like a wall cutting off a section of my uterus. Of course that wasn't good enough for me and I had to consult Dr. Google about this condition. Why do I do this to myself? I am going to put a call into my regular OB and ask him about this. Google says it can effect growth because the baby may run out of space to grow. Well now that's scary.  Just when you think you have enough to worry about.