I've been meaning to give an update on Conner, and he is taking a nap now, so I will take advantage of the free time!
Conner was supposed to have surgery back on April 19th to have the nissen and g-tube done. His surgery time was 1pm, and at about 1:30pm, the anesthesiologist came to Conner's bedside and talked to us. He explained that he didn't feel comfortable in going ahead with Conner's surgery after evaluating his last few echo cardiograms. He said that the pressure around the pulmonary artery had increased with each echo, and he felt that it could be too great a risk to do an elective surgery. He explained that there was the chance that Conner could do fine with the surgery, but there was also enough concern about Conner having a TET spell during the surgery that he personally didn't want to go ahead with it. He then contacted the other doctors involved and they all agreed.
That same day the cardiology team decided to get a new echo of Conner's heart because it had been about 3 weeks since his last one. After evaluating the new echo and seeing that the pressures around his pulmonary artery had increased again, they felt that heart surgery definitely needed to be done first before the other surgery. Somewhere along the lines, cardiology had signed off on Conner and so they hadn't even been aware that he was going in for surgery! We believe that the anesthesiologist was inspired to look into the situation further, to discover that the surgery may not have been safe for Conner. His keen sense of what he felt comfortable with and with what he saw on the echo's, led him to make a decision that changed everything (for good, we believe!). The surgery was canceled and it was decided that Conner would have heart surgery first.
Originally, Conner was going to have heart surgery anywhere from when he was 4-6 months old. He should be getting his heart surgery done in about 3 weeks or so, so he will be about 15 weeks old, just shy of 4 months old. We felt really good about the decision to wait on the other surgery and about getting the heart surgery done first. Conner is seeing his pediatrician once a week until his heart surgery to make sure that he is gaining weight and growing well. He now weighs 9lbs, 13oz! (he was born at 6lbs, 2oz) so he is doing really well with putting on the weight he needs. I am still pumping, so he gets my milk, and we fortify it with Neosure formula, to get in extra fat, calories and vitamins to plump him up for surgery! It seems like a lifetime that I have been pumping, yet it's only been 12 weeks! I am so happy though that I can provide him with the very best nutrition.
I need to also write about how the decision was made to bring him home. After it was determined that Conner would be having heart surgery in the very near future, there was talk among the doctors about keeping Conner at the hospital until then. Paul and I felt very strongly about bringing Conner home for the few weeks before his heart surgery.
The biggest reason that the hospital wanted to keep Conner there was because of the type of feeding tube he has. Conner's feeding tube bypasses the stomach and goes down into his small intestine. This is to help with his sever reflux and aspirating. If he is not getting food in his tummy, then he can't reflux it up and then aspirate it. This type of feeding tube can be dificult for parents to deal with at home because you can't check for placement. With a feeding tube going into the stomach, (an NG tube), you can make sure the tube is in the correct position with a syringe and checking for stomach contents, etc. You cannot do that with an NJ feeding tube (into the intestine). This means that the tube could dislodge from it's correct position and you would not know until you experience vommiting or other issues. With an NG tube, parents can put it back in place themselves, but with the NJ tube, the baby has to be taken to the ER to have it placed again. It is not uncommon for babies to pull out their own feeding tube, and that was another concern about how easily it could come out. So there were big concerns about sending Conner home with us on his NJ feeding tube, and they rarely send parents and baby home like that.
We set up a "care conference" for the following day after his surgery was canceled. At a "care conference" they have people come that are involved with Conner in his different areas of care. The attending physician came, our primary nurse, the social worker, the nurse practitioner, and his occupational therapist. We met in a room to discuss the 'possibility' of Conner being able to come home for a few weeks before the surgery (although Paul and I were determined that if they had said no, we would have grabbed Conner and rushed out of the hospital anyway! lol). The Dr. talked about everything that would be involved with bringing Conner home and made sure that we were well aware what could 'go wrong' (tube coming out, ER visits, etc). Then he went around the room, and had each person there explain their opinion about the situation and if they felt like Conner should come home with us. I felt nervous because I didn't know what people were going to say, although I felt confident that they would say it was the right choice. Each person had something so positive to say about us and they all basically said that we have the ideal situation for Conner to come home to. They said very kind things about us as parents, and we felt so good to hear that they all felt confident in us and that the best place for Conner is to be home. So the decision was made to let him come home!! We planned to "room-in" one night (they have a family room that you can stay/sleep in) in order to make sure that we felt comfortable with all the equipment we needed and how to use it. They have a nurse that is assigned to your room, in case you have any questions during the rooming-in time period. The rooming-in went really well. Conner slept perfect that night and we learned how to use everything and it was actually pretty easy!
We got all packed up the next morning and we were so excited to be able to come home that afternoon! When we packed Conner into his carseat, in the room, he started crying and getting so mad. It freaked me out because I didn't want him to cry on the way home! We took him of the carseat for a minue and soothed him. Then he went back in and was ok. Then we loaded him into the car and he started crying again. Ahhh! So we pulled over in the parking lot, took him out and rocked him and soothed him. We were both so worried about him crying on the way home because if he gets upset enough and cries hard enough- that's when he can turn blue from his heart condition! We said a very fervent prayer, pleading that we could just get home without Conner crying! We put him back in his carseat and he stayed asleep! To say the least, I was a ball of jitters and nervousness on the drive home, peeking at him under the car seat cover every 2 seconds to make sure he was ok. Paranoid first parent! lol. I have never felt such relief as when we pulled into our driveway, safe and sound. We got Conner all upacked, took him into our room where we rocked him and spent the night just looking at him in awe and wonder. We finally had our sweet little baby boy in our home!!!
Conner has now been home for 13 days. It has been an adventure! It has been stressful, and wonderful, nerve-racking and the best! We have had to take Conner back up to PCMC to the ER twice. The first time was because he had been throwing up stomach vile/mucous for a couple of days, really badly. When we took him in, they took an xray and said that his tube was in the wrong spot, and that we had to come back the next morning to have a new tube placed. So we went back the next morning and the Dr. took her own xray before pulling his tube out, and she said that the tube was in the perfect place! The second time was because his feeding tube got blocked and so he wasn't getting fed. We went in at 2:30am after several attemps at unblocking it ourselves with "unclogging" stuff they gave us in case it did get stuck. Conner hasn't been throwing up as much now (got some new medicine) and so we are thankful for that!
Conner loves to hear Paul and I sing to him. He coo's and makes the cutest sounds, and his eyes get big and wide and he gets this adorable little half smile. He loves to grasp our fingers and look at us. He likes to 'talk' to the little animal's that are on the fabric of his bassinett. He loves tummy time and this little musical stuffed bee that we have. Conner has just learned that he can chew on his hand and he is becoming more aware of the tube coming out his nose, and will rub his face incessantly against our chests to try appease the tickling sesation I'm sure it causes. Conner sleeps wonderfully through the night and is so accustomed to loud noises from being in the NICU for so long, that he doesn't wake up for anything! (we would have trained him that way anyways for noises, even if he hadn't been the hospital, but they did it for us, thanks!)
Conner has the perfect little personality and spirit to go through all of this. My mom was with me the other day, and she said how faithful Conner must have been in heaven, when he chose to come into this world into an imperfect little body that would need fixing...that he was so valient because he knew he would have to deal with so much medicine, shots, i.v.'s sedation, throwing up, reflux, feeding tubes and open heart surgery. When I think about complaining about not feeling well, I think about those first moments of Conner's life, when nobody knew that he was using every last ounce of energy to breathe and survive, or when he has had blood transfusions or other medical procedures which left him feeling weak and sick...I think about what he has been through and instead of complaining, I am so thankful for my health. And when I can't find anything to eat or I'm bored with food in my pantry, I think about Conner, and the fact that he doesn't even get to taste his food. He doesn't have the luxury of feeling full and satisfied after a feeding, because he gets fed 23 hrs a day through his feeding tube down into his intestine. Conner makes me stop and realize all the many wonderfu land incredible blessings that I have in my life and how blessed I am. He is the most perfect blessing in our lives and has helped us to count our blessings and know that Heavenly Father has given us all that we have, and all that we are. He gives us trials to humble us and teach us. He allows us our agency so that we can learn to more fully live and decide who it is we want to be, and how we want to use our lives to affect others. Trials help to remind us what humanity is about and how we need to serve and love others. We love Conner so much and we are so thankful for him and all that he teaches us. He truly is an instrument in Heavenly Father's hands to help remind us of Him in our everyday lives.
5 days ago