The night before was restless as Zoe was up off and on all all night. One of the problems we are facing is that she is most comfortable sleeping on her belly. Londyn was the same way, but I wasn't as concerned. I know SIDS is very real, but with Londyn I was much more lax on everything. Now with Zoe, every ounce of her care is hypersensitive and the last thing I want to do is put her at risk for any unnecessary complications. Our compromise has been putting on to sleep on her side. She doesn't like it as much as her belly, but much better than her back. Anyway, I finally got her comfy and sleeping at 5:45am. Then my next shift started at 5:55am when Lulu decided it was time to wake up. Usually when she wakes up early, she climbs into bed with us and goes back to sleep for a couple extra hours. Keyword: Usually. This particular morning was not the usual and she wanted to start her day. I pacified her with a sippy cup of milk and Nick Jr. but I was so overly exhausted that I couldn't even sleep... I hate that feeling!
By 10am, I still hadn't heard from Dr. King or one of our cardiology case managers. This is when I opened up a can of worms. I called and left a message for Tami (case manager) about the situation with Dr. Riley last week. She called back and explained that Dr. King was very upset with Dr. Riley's decision to forego a gastrostomy tube and try an nasojejunal tube first. He thought that Dr. Riley was on board when they had spoke about Zoe's case before our appointment, so it was frustrating for all parties involved when he rerouted the plan. Dr. King recommended a second opinion with one of the other doctors in the Peds GI group. Apparently, this is not the first time that Dr. King has had issues with Dr. Riley and will not be referring patients in the future. After discussing the situation with Tami, we came to a consensus that Dr. Riley was just not a good fit for us. Tami then got in touch with the department head, Dr. Fridge to find out what their policy is on second opinions and switching providers within the group. Dr. Fridge understood the situation and offered to see Zoe this week! Hallelujah!
After all that, I get a call from my pediatrician, Dr. Rollin. I was surprised that in the midst of this unnecessary drama, she called to get in on the situation. I love our pediatrician, but the last thing I needed was to add another doctor to the complicated mix. She said she had been given the rundown on our GI appointment and agreed with Dr. Riley on trying the NJ tube option. I was exhausted, frustrated from being on the phone ALL day and after finally getting everything figured out... I was just done. I told her that ultimately my gut was telling me that neither the NJ tube, nor Dr. Riley were right for us. She said that it was up to me but she would recommend really considering his plan.
After all of this, I still felt guilty going behind Dr. Riley's back without at least letting him know my concerns and frustrations. How can I blame him if I don't tell him exactly how I feel? Speak of the devil... he called me directly. He left a message saying that he had spoken with Dr. King that morning and heard that I might have some questions. (I know for a fact that Dr. King wasn't happy and told him straight up that I was very upset after our appointment... but maybe that translates to "questions" to him?) I called him back and told him that Zoe was doing really well with the continuous feeding and occasionally spits up, but has not vomited since we made the switch. He tried to back pedal and say, "why didn't anyone tell me that? If I had known she was doing so well, I would have said of course we will do a g-tube." This was contradictory to his original plan to begin the continuous feeding, place the NJ tube and then see how she does. Anyway... this post is getting way too negative for my liking, so let's just get it over with. By this point in the conversation, he had done a complete 180 and was now Team G-Tube. With that said, I still did not have a good feeling about him. I felt that he had been caught in a poor decision and if continuing in his care, we may face similar issues in the future. I asked him if now that the G-tube was his recommendation, if it was possible to have another doctor within the group do the procedure. His response was as I expected... that if we switch doctors, I would need to start from scratch with a consult and that their group does not like to do that as he know's us best. I told him that I wanted to talk to Dr. King before making any other decisions. Dr. King is our guy. He has been with us since I was 20 weeks pregnant and without him, who know's how Zoe would be right now. We trust him with our child's life. You really can't trust a person more than that.
By the end of that conversation, my mind was made up. Even though we have to start from scratch with Dr. Fridge, it is what my motherly instinct is telling me to do. I have heard fabulous things about her from other heart mom's and the approval of other parents in my place is huge. We will see her on Friday at 1pm. Hopefully, what was initially supposed to be a simple situation will go as planned and we will have a Gastrostomy tube placed in the very near future.
On a super fabulous note, last night Zoe slept from 1:30am to 9am and she would have slept longer but I wanted to get something done this morning. I am trying to keep her awake more often during the day by not letting her sleep more than 3 hours at a time, spending lots of time "playing" during the day and only swaddling her when she sleeps at night. Praying for another good night tonight!
Today, my sis picked Lulu up at 9:30am to play with her cousins and give me a break. Since I had gotten a pretty decent night of sleep, I wanted to get out of the house. What to do? Of course. Target run. I took Zoe (feeding pump in hand) and thoroughly enjoyed two hours of uninterrupted browsing without whining, bribing or chasing of a 2 year old. When I was a teenager, my zen place was Nordstroms... but that was when life was all about me. As an adult, Target now gives me that same therapeutic escape. I don't know if it's the free refills on DC at the cafe... the 50-70% clearance racks that scream my name or the fact that they now carry groceries, but it's my go-to place to just get away. Really... the only thing that would make it a little bit sweeter is free childcare. Can I get an AMEN?
Today, my sis picked Lulu up at 9:30am to play with her cousins and give me a break. Since I had gotten a pretty decent night of sleep, I wanted to get out of the house. What to do? Of course. Target run. I took Zoe (feeding pump in hand) and thoroughly enjoyed two hours of uninterrupted browsing without whining, bribing or chasing of a 2 year old. When I was a teenager, my zen place was Nordstroms... but that was when life was all about me. As an adult, Target now gives me that same therapeutic escape. I don't know if it's the free refills on DC at the cafe... the 50-70% clearance racks that scream my name or the fact that they now carry groceries, but it's my go-to place to just get away. Really... the only thing that would make it a little bit sweeter is free childcare. Can I get an AMEN?
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