So much to talk about

Hi everyone! How are you all doing? I know it's been awhile, but that's because we have been super busy over the last week. I'm not sure where to start. I think we left off with Patrick going back in the hospital. He had a positive result for a urinary tract infection. Well, I wish that was all. I remember I told you all about his PDA and the cardiologist. I will pick up from there. Patrick is still in NICU. He has been there since last Friday. I don't think he is coming home any time soon. The first few days, he was put back on the nasal cannula. Some nurses kept it on him, some didn't.  Sometimes he goes down on his oxygen , sometimes he goes up. Sometimes, they up his liters, sometimes they drop it. Sometimes it works, and sometimes it doesn't.  They have all been frustrated by this, as have we. There were plans on him coming home today, but we knew that wasn't going to happen. The impression we get from the doctors, is that it is going to be the cardiologist decision to send him home or not, and her decision on whether or not it will be with oxygen. Here is the situation though. Patrick still has a hernia that needs to be repaired. He also needs to be circumcised too. Normally the circumcision is an outpatient, thing, but the hernia repair is not. He needs to be intubated for the hernia repair. I know, right? We just keep going backwards here. We are in a real situation here right now. I want him home so bad that I'm actually started to get irritated by it. It's actually ticking me off at this point. I am tired of making the drive, I am tired of the monitors, I am tired of the gowns. I'm pretty sure my skin layers have gone down dramatically from scrubbing with a plastic brush every day. That being said, Do I trust Patrick enough to have him come home, after a hernia/circumcision repair, all the while still having a unstable heart, and weak lungs. Not in any way, shape, or form. Did we ask them to do it there before he goes home so that he could be monitored 24 hours, so that we knew he was stable? Hell yes we did. I am not playing games with him anymore. I do not want him to come home, get another infection, and have to go back. Sooner or later, they aren't going to let us back, and he is going to have to go to pediatrics. We don't want that.  The deal is, they can't do the surgery unless the cardiologist says it's okay, then gets the anesthesiologist to agree. So, tomorrow, he is having a repeat echo to see how he has progressed this week. She will make the call at that point on whether or not to let them do the surgery or not. If not, we have to wait until later.  His hernia has become worse in the last week or two, so we don't want to wait much longer. Unfortunately, if his heart isn't stable enough to have  it done, we have too. We are in between a rock and a hard place. He is doing well, but still has a lot against him. On a brighter note, he is eating up to 120 mls of food now! I can't believe that! As of tonight, he is 7 pounds and 8 ounces. Yea, little man! That is a big thing, because him getting bigger only helps his PDA. The bigger he gets, the bigger the chance the murmur will shrink which means he might not need the surgery. Let's see what else? I think that might be it.  He is done with his antibiotics, which means he is done with his head catheters. He had one in the back of his head last week. Yuk. It was hard to look at. I think he had a total of like 10-13. he kicked out three in one day. Naughty little man! haha.

                                                                                    Ouch, I hate needles in my head!

                                                                                    I hate nasal cannula!

                                                                                  Mom, I took this out!

                                                                                  Agh, my paci fell out!

                                                                                  Sleeping, but just for a second..

Brady
Brady is doing well. We went to he eye doctor on Wednesday, and he said that it was time to treat his right eye. He said he sees some stage three R.O.P. and that part of his eye was starting to raise up, which concerned him. He said that the laser would be the best way to go. I guess the Avastin shot that they both had, doesn't work as well after your due date. He said the laser is better in this situation, and that because his eyes are more developed, there would be less peripheral damage. Off we headed to the NICU. It's funny, we went from 1 kid, to 2, then 1, then 0. Like I said, it was a busy week. We headed in to get admitted at 6am. That's right, 6 am. His primary nurse met us in the lobby, and we headed upstairs. He got to have his own little room. It was an isolation room, because they had to test him  for RSV, and for the flu. As long as he was negative for those two, he could go with his brother when he woke up. They put in a cath. in his head, and started their work. They had to sedate him, and it didn't work that well. I guess he is less tolerant now. It took him about 40 minutes. He said he shot the eye like 2300 times or something crazy like that. He feels pretty good about the whole thing, and he wa able to get everything. He is getting eye drops like every 6 hours. He is on two. While he was there, we also found out that he has Thrush. No wonder he hasn't been eating as much. His little tongue hurts. He also got medicine for that. They also gave us some lotion for his head, because it was a little dry.The nurse then said that they pulled some blood, because when they out the cath in, it bled a little more than they wanted it too. We also told them that at the cardiologists office, that the blood pressure cuff gave him petechia from squeezing to hard. I guess because of those two factors, they wanted to make sure everything was okay. It came back that his hematocrit and hemoglobin were sl. low, but that his reticulacytes were fine, so they were okay with it. We have 5 appointments for him this week. We had rehab today. We saw his therapist, Tim, and he said he is happy with were he was at. He has a strong neck, and he is moving his limbs well. he reacts to sound, and is alert. We will recheck in a month. We also have a follow up with the eye doctor. We start Early Steps this week, which is a program for early development for both of them. They will evaluate them and teach us how to, well, teach them things. They will monitor their motor skills, and cognitive skills, and try to catch any developmental problems before they start to get worse. It is from birth to 3 years old. I am excited to see what they teach us, because I have heard that the kids who have done this are super smart. We also have his surgery consult this week to discuss circumcision, and then his pediatrician. Wheww, it's going to be a rough week.

                                                                              Sleeping at home

                                                                              Waiting to go to surgery...

                                                                            After my eye surgery, still sedated.

                                                                                Hanging out next to my little brother after surgery. We finally got to be next to each other!

                                                                                 My second Primary, Melissa

                                                                                  I was FrankenBrady for Halloween

                                                                                  Holding my head up like a big kid.

Alright kids, that is all for now. I will let you know the word on Patrick's surgery as soon as I know!
Love to all!
Em, Craig, and the boys!