As for our little Robert's entry into the world...He went into distress during labor and it was decided that he needed to arrive as quickly as possible. After they broke my water, his little heart was just not doing so well and they were worried that he was going into shock. It was decided rather quickly that I needed to have a c-section. Of course, Phillip had stepped out of the room to inform our waiting family that everything was fine (and give them a brief synopsis of what had occurred up to that point...no need to worry about the craziness as it was all under control at that point). So as the doctors are talking in a language that I mostly cannot understand, one looks at me and says, "You will be having a c-section." I take a deep breath and think to myself that I have an hour or more to mentally prepare and it will all be okay... I ask her when this will happen, and she says, "You might have 15 minutes." Omg. Call Phillip. He rushes back in and they hand him his scrubs. As he puts them on, various nurses and doctors are entering and leaving the room. The doctors are mostly looking at my chart, printouts, current stats, etc. Nurses are gathering things from the room and packing up the IV, bed, cords, etc.
It's all kind of a blur at this point. I am being wheeled into the OR, Phillip is being escorted to the waiting area while I am prepped for surgery, and our family waits outside thinking everything is just fine because Phillip was just out there assuring them it was. I am almost immediately moved to the OR bed and strapped down. At that time, various doctors and nurses stop by my head (as I can't really see or move) to introduce themselves and tell me what they will be doing and what to expect. I am really fine beyond the shock of it all happening so quickly until the Neonatologist comes by and tells me that he will step in after the baby is born at which time, the baby will be rushed from the OR to a side room where he will be resuscitated, examined, and then moved to the RNICU. I just nodded. But all I could think was RESUSCITATED??? The c-section started and as tears rolled down my face, the nurse looks over and asks if I have family available. YES! My Husband! Who is apparently still sitting in the OR waiting area. There were so many people in the room that I just assumed he was somewhere in there. But apparently not. No one had remembered to go get him. Someone grabbed Phillip and he had to tiptoe around the doctors as the c-section had already started...He apparently got a nice view of my insides which he said "aren't pretty".
Not too much longer and we heard a crying baby. He came out crying! No resuscitation needed! He was rushed out so quickly that we were unable to see him. After several minutes, the nurse took Phillip to see him where he was able to escort him to RNICU. He took a few pictures and brought them back to me so I could see. I went on to post-op recovery where I spent the next 3 hours. I wasn't allowed to leave until I could bring my knees up. In the meantime, the doctors were busy taking all his vitals, stats, and running some tests.
After recovery, we were able to "roll by" the RNICU room to see him. Since I was in a hospital bed, the nurse held him up so I could see him. The medication he was on (until yesterday) was so high that he was unable to be touched or held. He was receiving prostoglandins that kept the ductus aeortis and other arteries as open as possible. But side effects made him very sensitive to the touch (it hurt!), very warm, and very irritable. So we would not be able to touch or hold him for a while. :(
As for my stay in the hospital...My recovery was a little more than I planned. C-section's are not fun! I didn't realize that the pain and inability to do almost anything by myself would be so intense. I felt so bad asking Phillip to do the smallest of tasks for me constantly. But I literally could not do anything for myself. Still basically can't. Everything is a struggle. I was in bed until mid-day on Tuesday and then increasingly got more active. I was on Percocet and Motrin for pain which I could have every 4 and 6 hours, respectively. I had to ask for it though (the nurse wouldn't tell you when your time was up). And I would either be asleep, down in the NUCU, or simply forget. (My advice to anyone in this situation is assign someone to keep up with the time for you and remind you.) The nurses kept telling me to "stay ahead of the pain" meaning take the medication before the pain is really bad. But again, I would forget. The Percocet just made me so sleepy. And then I had to start taking Benadryl through my IV because one of Percocet's possible side effects is being itchy all over. Great! And then the adhesive on the c-section bandage (taken off around 24 hours after surgery) gave me blisters on my skin. So not only did I have a very sensitive incision, I also had these tiny little blisters appearing on my belly. Disgusting. I know. Benadryl has always made me just fall asleep. So for the first 2 days, I was a complete zombie. I stopped taking the Benadryl completely and tried lessening the Percocet so I could actually be around Robert without falling asleep and intelligently talk to people (I was making nonsense most of the time) and especially his doctors.
As for Robert...We were able to hold him on Tuesday finally. And the grandparents were able to see him. Each day, we were able to hold him a little more. The only problem was that I was still recovering...and sleepy...and needing to be in bed (as I could not walk, stand, or go to the bathroom by myself). My parents came in and took some of the feedings as that was something we could do. And Phillip went down and spent some time with him as well. He has been on Prostaglandins (a type of medication) that is supposed to help keep his Ductus Arteriosis open until the doctors can determine if he is dependant on it providing oxygen to the lungs. But one of the side effects of Prostaglandins is that it makes him very sensitive to touch. It apparently hurts to be touched, therefore, making it scary to hold him (just this horrible wimper of a sound while picking him up until he is comfortable again). Plus, he has a Umbilical Vein Catheter (an IV running through his umbilical cord) that is very sensitive and would be absolutely terrible if accidentally pulled or tugged on (i.e. painful!). It makes it very scary to touch him, much less, hold him. They actually decided today to stop the Prostaglandins at 3pm as they determined it wasn't making a difference in his stats. They have been slowly decreasing them over the past 24 hours with no change (so I assume that is how they made that decision). And you can see that he is more comfortable being touched as well. It will take approximately 24 hours for the Prostaglandins to leave his system though.
What is the Ductus Arteriosis? The ductus arteriosus is a normal fetal structure, allowing blood to bypass circulation to the lungs. Since the fetus does not use his/her lungs (oxygen is provided through the mother’s placenta), flow from the right ventricle needs an outlet. The ductus provides this, shunting flow from the left pulmonary artery to the aorta just beyond the origin of the artery to the left subclavian artery. The high levels of oxygen which it is exposed to after birth causes it to close in most cases within 24 hours.
Physically, Robert looks pretty normal. His hands and feet are a little bluish and sometimes his lips. But when he is all wrapped up in a blanket and you don't see any of the cords and monitors, he looks like a normal baby. He sleeps 24 hours a day. I have only seen an eye crack once at this point. The medication he is on makes him very sleepy. And beyond that, his little heart pumping is just exhausting as it takes a lot more energy to keep his body working at this point. He looks like a sleeping angel all day long. :)
Seeing the doctors is just by luck. They made their rounds at odd hours so you never knew when they would be there. He has a whole team looking after him - Neonatologist, Pediatrician, Cardiologist, and Geneticist. Basically, several of each. We haven't met all of the doctors that are looking after them, but we have met several. We did see the Geneticist (who was actually sent to us by one of the Cardiologists). He is helping with the genetics testing and hopes to have some results by this coming Monday. Not all of the testing will come in at the same time most likely, but we are mostly concerned with the DiGeorge Syndrome results (we have known about this one for a while now...). The Geneticist said that he would like to follow up with additional testing at 6 months of age and maybe even longer even if everything returns as negative. Basically, it sounds like their are tiers of testing to ensure all syndromes and disorders are truly negative. [If you didn't know...A heart defect can mean other problems such as genetic abnormalities. They want to be able to rule those out. It doesn't always mean that treatment will vary, but it could.]
Robert has his own private NICU room with a couch, chair, TV, etc. It's very nice. I couldn't imagine a better place for him to be right now. He has at least 1 nurse assigned to him so he is basically looked after 24/7 with someone at his bedside. The nurses are a wealth of information. So even though we don't see the doctors for very long, it hasn't been a concern.
And Discharge...I was discharged today by the way. I was actually very proud of myself that I hadn't lost it on anybody while in the hospital (as I had previously melted down when we had Emerson...I blame hormones and drugs.) But then during discharge, I had a complete freak out moment on the front desk receptionist in the NICU. I was discharged from the maternity ward to the NICU (rather than being wheeled to the car like normal). So my maternity nurse and a trainee nurse delivered me to the NICU in a wheelchair. At that time, the woman refused me entry because I didn't have my proper qualifications. When I was a patient, my wristbands tied me to the baby. But as I was being discharged, I needed a NICU badge (that she could make right there). So she sent me to the lobby to check-in to the hospital as a visitor. The nurses wheeled me down there and then back up. And then she refused me again because my "sticker" wasn't in a plastic lanyard (again, that she had in front of her). The lobby doesn't have lanyards. We have to get them from her. But she was too busy to be bothered because YouTube videos and her adult son (who was not qualified to be in the NICU) were using up all of her attention span. So I lost it. Screaming and crying apparently get you somewhere. I was let in and got a lanyard. She was reprimanded. Not my proudest moment but what else was I supposed to do?
We will be staying in a real bed tonight. Beyond excited. We left the hospital with the intention of grabbing dinner and going back. But then I started to feel the pain and filling my prescription was top priority. It was 8pm on Friday so we went to Wal-Mart (ughhh...). They were able to fill it pretty quickly, but in the meantime, Phillip pushed me around in a wheelchair (pitiful). Sitting in a wheelchair, crying (pain induced but then also thinking that I was missing the 8:30pm feeding), and not to mention in a Wal-Mart, was a personal low for me. But I was able to get a reusable heating pad (a must for c-section...or probably any delivery or stay on a hospital bed) and my meds...So things are looking up right now as I lay on the couch before bed...and another long day at the hospital tomorrow.
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