Making the decision to have a child – it’s momentous. It is to decide forever to have your heart go walking around outside your body. ~ Elizabeth Stone

Friday, December 30, 2011

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!

Monday, December 26, 2011

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.

Tuesday, December 13, 2011

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.

Tuesday, December 6, 2011

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.

Friday, November 11, 2011

OB Appt Yesterday

Well good news here. I had an OB appointment yesterday and baby Elijah's heart sounds good and strong. It's so strange to think that he only has half a heart and yet it beats at the right pace and sounds strong.  I get a little frustrated at these appointments. Although I really do like my OB, he is waaay out of his league right now. In trying to ask him questions regarding HLHS he is of no help. He is taking directions from me as to how to handle my care. I wish he had more insight but the more I ask, the more frustrated he becomes. I had to just step back and stop asking questions. He has stopped giving me ultrasounds and now only uses the doppler. I think, to be honest, he isn't sure what he would be looking at on the ultrasound so he just doesn't go there. On the other hand, I have some great specialists who take time to answer questions and do really comprehensive ultrasounds, so I really shouldn't complain.

We are going to a consult at Children's Hospital in LA in a little over a week. Although we were pretty set on care at UCLA, upon several friends urging, we have decided to explore all of our options. Most decisions you make in life are not life or death choices, they are just one decision in a series you make throughout life. This decision, however, feels like it could quite possibly mean life or death. Scary stuff if you ask me.

Sunday, October 30, 2011

Diagnosis

At our 12 week NT Scan, baby Elijah was diagnosed with Hypoplastic Left Heart Syndrome. Since then, we have had many very thorough scans, an amnio, and an echo exam. Elijah's chromosomes all came back normal. This was such a relief. The echo confirmed the HLHS diagnosis and showed that the left side of Elijah's heart was not developed and there was absolutely no blood flowing. The right side of his heart is pumping strongly and is a little larger to compensate. His heart rate is normal, although his blood flow is abnormal. He is growing well and everything else looks good.

Although this is a very severe deformity, they have the science to treat the heart.  Elijah will have to have three open heart surgeries after he is born in order to reroute the heart. The first surgery will most likely take place during his first week of life. After he is born, they will stabilize him and wait for his blood pressure to drop a little. He will then have the Norwood Procedure. This is the most risky procedure. Between 4 and 6 months, he will have another open heart surgery and the Glen Procedure will be performed. The last of this series of surgeries, the Fontan Procedure, will take place between 2 and 3 years old. It is important to remember that this is the best case scenario. It is possible that he will need additional procedures as well.

We will be delivering at Mattel Children's Hospital UCLA at the end of March. As we get more information, we will post it here.  Please keep us in your thoughts and prayers.