June 25 eve

Today went from bad to worse. Everett was put back on oxygen, not for anything serious though. They think it may help his respiratory rate slow down, the cannula still is never in his nose! Ugh. I asked if we could take things down a notch and give Everett a little break. We have been pushing him hard to learn how to eat, and I feel like it is stressing him out. I have been asking them to take it slower as it is, I can tell he needs brakes more. It is very clear to me that he is uncomfortable with milk in his mouth, every time he tries to swallow he chokes. I do not want him to hate eating, and give up. I don't think that is in his nature, but I don't want to push it. I also asked if we could forgo the milk on the pacifier so he has one safe comforting. I think it's a good idea for many babies, however it is obvious that he gets stressed out when milk is in his mouth. He stopped wanting his pacifier. This poor baby needs something that he can trust. Now we have a note hanging so everyone knows not to put milk with his pacifier. We decided yesterday to take a 24 hour break from trying to feed him with a bottle after my breakdown with the nurse practitioner. They have not seen me emotional until yesterday, so I guess they took me seriously. I believe that is why she put the oxygen on too, knowing we were taking a break from feeding, we may as well help him any other way we can while we are at it. His respiratory rate was too high to even attempt feeding anyway. If something could have gone wrong yesterday it did. We had a male nurse who floated to the NICU, he had no idea what he was doing. Poor guy was trying, but he didn't know anything that was supposed to go on...how much Everett ate, how often, how fast, he let him pee all over his clothes and bedding two times. Even when I was there asking him to cover him up. He was trying to measure his belly every time he fed him which is not necessary. His diaper needs to be out-of-the-way so I kept covering him up with a wipe, but he kept moving in with his clumsy behavior.  :/

It was Dr. Brooks last day with us too, she has been outstanding and I really want her to stay until we can go home. She kept talking about how hard she was trying not to get attached, but made it clear she was attached to both of us. She called me into her office to talk and said she had never done that before. I was scared, but it was more for an official goodbye. She told me how sorry she was for everything, and then took that statement back. She said that she is not sorry he has trisomy 21, because she knows he is going to have such a wonderful life with me and bring our family so much joy. Then we got into the serious talk, she said if things don't turn around with the feeding soon we may need to consider a G-tube, or a feeding tube. That would allow him to come home!!! She knew although most parents would be apprehensive about this, I would be all for it since all I want is for my baby to be home in my care. She says it scares most parents too much and they think their baby will never eat. She told me she was confident he would be eating but it might take longer than we had hoped. She wanted me to know this information since she was going to be gone so I could ask about it since doctors only use it as a last resort and don't bring it up for months since most parents avoid it. The upside is he would come home, the downside is he would have to have surgery to put the port in. He would also have to be stable with everything else first. His breathing is still not where we would want it to be at this point.  We also need to give him more of a chance to learn how to eat, it has only been a few days of trying. She kept reminding me how far we have come in such a short period of time with how serious his illness was. I ended the conversation by letting her know how thankful I was to have her as a doctor for these past critical weeks, then she hurried us out of her office telling me she didn't want to cry.

So, I was sad with where Everett is at with eating, nervous about his breathing, trying to deal with a male nurse who knows nothing, who keeps trying to talk to me about current events and how old the cuff for a blood pressure machine must be…then I find out that our plan for me having a personal room shit the bed. I had been told that there were two twins in separate rooms that would be moved to a twin room so I could have a room with the door. When I asked yesterday they said that was no longer going to happen since two twins were about to be born that would probably, eventually, be in the twin room. So the charge nurse told me that there is a possibility that on Monday I could get a room. What frustrates me most is the majority of the babies enclosed rooms do not have parents here by their bedside all the time like I am. I feel horrible for those babies, however I think that if a parent is involved they should take precedent to a room where one might manage to catch a bit of shut eye. A lot of times when babies have plans of going home it doesn't happen, I am really hoping this little baby gets to go home so ever and I can have a private room so I can get some sleep, and he too! It wouldn't be so bad if our location wasn't across from the baby that cries the most, the lounge, the storage area, and the bathroom. It's literally the worst location possible. I asked if I could be moved down the hall where it is quieter and she said yes, however I would not be able to move another time. So I will hold out in the hopes for the private room.

After the nurse let him pee all over everything, again, and I was changing the bed for a second time, trying to manage all of the new tubes with his oxygen holding Everett in one hand, trying to make the bed in the other, I lost it. I know I have not been getting enough sleep, the day was too full of setbacks, I started bawling with my baby in one arm and pee blankets in the other as I wept my mascara filled tears all over my poor baby. (I need to invest in waterproof mascara!) I was facing the wall in hopes I could have a good five-minute cry with no one noticing. For some reason Dr. Brooks came back to his bedside, (she is like a ghost, I never see her) I'm sure I scared her as much as she startled me. Snot was running into my mouth since I had no hands to blow my nose, I did consider wiping myself with his peed on blankets at one point. I was late, needing to get Kristin from the airport. I told Dr. Brooks I needed to get my sister but had to change the bed and get Everett to sleep before I left. She help me make the bed and get Everett wrapped up. She knows I can't leave with him awake and fussy. She told me to go and she would get him to sleep. She text me about 15 minutes later saying he was breathing well and asleep. I'm assuming it was from her personal cell phone. It gave me that sense of small-town USA that I miss and crave so much at times like these. Then later that night she text me again saying that his echo came back good!! Which was great news (clearly) that his heart is still doing well! She has such empathy for us, her daughter was in the NICU when she was born she has cerebral palsy. So she truly gets this madness. I thanked her again for everything. I'll send her a picture of Clara and Everett together once we are home.

Thankfully Ana called out of nowhere just at the nick of time. I still don't even know why she called me, I completely hogged whatever conversation she was planning to have.  Then I was able to get Kristin from Andre's work. I have not a clue what I would do without my two sisters!

Andre went to see Everett after work and Kristen and I came when he got home! I was assuming Kristen was anxious to hold him and I knew if I took her with me I would have to go home at a reasonable hour and get some sleep. We had a new night nurse, she was wonderful! I finally got some rest! A very decent ending to a horrible day.

Soooo tired!