2 Doctors, A NICU, and a Crying Mommy

Yesterday was a very long day for Joe and I.  It all started at 4:30am when we had to wake up to get ready to be there on time.  Stupid me, knew there was a McDonald's in the hospital, and since it's a hospital, I figured they would either be open 24/7 or have very early hours or something, especially since the ones just around town open by at least 6............ We had to check in at Cardiology at 6:30am, so I figured if we got there by 6am or a little before that we would have time to get me a wheelchair ( since I'm on bed rest and not supposed to be up walking around), and get us something to eat real quick because I knew we would be hungry. Well....... apparently the McDonalds there doesn't open until 7am. Ugh, It's a good thing I threw a little snack bar thing in my purse before we left in the morning. So we get my wheelchair, and Joe wheel's me upstairs to cardiology.... and of course nobody is there........ but at least the door to the waiting room was unlocked... so we went inside, turned on the lights, and waited...... and waited, and waited........ they told us to be there at 6:30 for check in, but they didn't show up until 6:45.  We checked in, and then they took us back a little after 7am for the Echo......towards the end of the Echo, Dr Fripp came in and I introduced him to Joe.  After the Echo was done, we didn't stay that long to talk to him because we still have an appointment with the Surgeon downstairs at 8:30, but Joe was able to ask him some questions, and I asked him about Dylan's Atrial Septum which is what he said looked a little restricted last time and wanted to keep an eye on.  He told me that it does look a little more restricted than last time, but at this time is still considered "mildly restricted" ....... He want's to do another Echo on March 2nd, when I'll be 36 weeks, so check it again and see if its gotten any worse........ at which time, he again mentioned having to schedule a C-section because of the need for immediate intervention.  So let's all just hope that it stays only "mildly" restrictive.

We then went downstairs to meet with Dr. Lamberti, who will be Dylan's surgeon. I was told when I made the appointment that there is always a possibility of him not being there due to emergency surgery or some type of event like that, but that if that happened, they would call me beforehand........  Well, it turns out that they added a pacemaker revision to his schedule for yesterday morning, but they didn't call us the night before because he knew that I would already be in the hospital anyway for the Echo we had at Cardiology right before.......... So when we went to meet with him, we were told that he wasn't there, that he was in surgery, but that he might have a little time in between surgeries to meet with us real quick for like 10 minutes, and then we would have to schedule another time to come talk to him on the weekend or something.  We were very disappointed because of course we were looking forward to just getting this all done in one day and have some answers and more information, but there was really nothing we could do........ 10 minutes was better than nothing that day right?  At least we could meet him and get a feel for him and what he's like....... so we said that we would take the 10 minutes and then try and reschedule something later.  He was still in surgery for about another hour, so we decided to go get something to eat real quick at McDonalds, and then we went back to Dr. Lamberti's office.  He was still in surgery, so the lady at his office arranged for us to take a quick tour of the NICU.  For being what it is, the NICU at Rady's Children's is very nice, its all brand new, there are two sides of the NICU, the east and the west..... Dylan will be on the West side, which is where all the cardiac babies are. All of the babies on that side are either waiting for surgery or have had surgery and are recovering. All of the nurses on that side are specially trained to take care of the cardiac babies, so that makes me feel better knowing that is what they specialize in and know how to take care of them.  It's divided into a whole bunch of different rooms, with only 2 babies per room, so you kinda have somewhat of a little more privacy when you are there with your baby.  We can't stay with him though :(   The social worker told me that if I wanted, we could put our name on the list at the Ronald McDonald house that is directly across the street if I wanted. She said that priority is given to the families who live farther away, but that there are still rooms usually available that we might be able to get.  I haven't decided if I want to do that yet....... Of course I want to be as close to Dylan the whole time, knowing that he is within 3 minutes from me would make me feel so much better, but I'm also not comfortable knowing that I could possibly be taking a room from a family who is from out of town or further from the hospital than I am, unless it could be worked out that if there was a room available and we took it, that if a family came in after us that needed it more, that they could kick us out and give them the room.  I'm not sure how everything is going to work, I'll talk to the social worker some more, but more than likely we'll just end up going back and forth from home every day.  I thought I was doing pretty good when they first wheeled me into the NICU........  I was fighting back the tears, and I was doing a good job at it......... Until the social worker started telling me how she can't even imagine how and what i'm feeling having to go through this, and with this being my first baby and everything........ I just started crying.... and then she asked me if I wanted to actually go into one of the rooms and see one of the babies........ I couldn't do it.... Since Dylan's diagnosis, I've seen so many pictures and videos on the internet of how the babies look after surgery with all the tubes and wires and machines, and its such a hard thing to see...... my heart aches everytime that I see the pictures and videos, but its even worse actually being in the NICU with the babies..... knowing that my little boy will be right there with them soon.  I know it's necessary, and its the only way to give him a chance at having a decent life........ but its just so hard to see.

After the NICU tour we went back to wait for Dr. Lamberti.  We were only expecting to be able to meet him real quick and not be able to have many questions answered, but we actually got to speak with him for about 45 minutes before he was called back to the OR.  We like him.  He's very knowledgeable, easy to talk to, and very nice. He read, and went over the report on the Echo from Dr. Fripp we just had earlier that morning ( I wasn't expecting the report to be done so soon), and this is what the summary of the Echo said :

1. HLHS with a mildly restrictive atrial communication
2. Atretic aortic valve
3. Severely Hypoplastic mitral valve
4. Severely Hypoplastic ascending aorta
5. Severely Hypoplastic left ventricle
6. Left to right atrial shunt


Dr. Lamberti said that Dylan having a Severly hypoplastic aorta is not good for him at all.  He doesn't have the best anatomy for a favorable non complicated case of HLHS ( as "non complicated" as HLHS can really be)  but that he has seen babies with the anatomy that Dylan has and they are doing good, so I'm not giving up.  It just might mean that the fight will be longer or harder, and there might be more hurdles along the way..... but we're gonna be right there fighting with him.  He said that a lot of Dylan's outcome will be based on his gestational age, his weight, and his ASD ( atrial septum defect) ..........  So the best thing I can do for Dylan right now is to KEEP HIM INSIDE!!  The closer to 40 weeks that he's born, and the more he weighs, the better for him........... I don't have any control over his ASD.... all I can hope is that it stays only mildly restrictive and doesn't get any worse for him.

I think I covered the basics of what we were told yesterday, maybe I forgot a few things, I'm still recovering from being out bed and the long day yesterday, so I'm still really tired.  I just wanted to give everybody the gist of what went on yesterday and most of the information that we were given.  Overall, yesterday was a productive day, and we got a lot of the questions we wanted answered.  I'm not quite sure if any of that makes me feel any better or eases any of my fears, but at least its all over with.   Thank you everybody for keeping us in your thoughts, and for all the kind messages yesterday.  It's so greatly appreciated!  I'm 33 weeks today, so only 7 more to go! Holy Cow!

Love and Heart Hugs to everybody!! <3