June 25

Everett slept through his first attempt at a feed today. He tends to be quite tired in the morning. He is four weeks old today, I hate to think about that, I never thought we would be here this long. What is even scarier is I have no idea how much longer it will be. With him having trouble learning to eat, it's becoming quite discouraging. I am trying to stay patient, it's so hard, I just want him home.

Andre came for the 5 o'clock feeding last night. Julie, our speech therapist was here and did a few assessments. She is coming back today to meet with me at 11 for his next feed. I am hoping we get some ideas and answers about how we can help him. His respiratory rate is still quite fast so it is hard to feed him in fear of aspirating. It is like he has been running and is out of breath, and on top of that he needs to learn to suck, swallow, and breathe without choking. We continue to ask a lot of this little guy. He is trying, you can tell he wants to eat, but is very apprehensive. Understandably so. He is also still quite hesitant to swallow. They want to do a swallow study on him but he needs to be able to drink 15 mL on his own and right now we are between five and 10 if we are lucky. 

I am trying not to get too discouraged, I know his lungs still have some healing to do. His respiratory rate needs to slow down for his health and in order for him to eat. I came back last night and we did belly time. He did a great job picking up his head, those big cheeks must make it heavy. He only lasted a few minutes and then we read a book. My occupational therapist taught me how to give him a massage, so I did that next to get him nice and sleepy. It's like he knows when I am about to walk out the door, his eyes pop open brighter than ever. It is the worst feeling in the world to leave him. I bawl every night on my way out having to go. I want to take care of my own baby. I want to be there for him when he cries. I want to be the one that changes his diapers, feeds him, and snuggle him. I am not a believer in the Ferber (let them cry it out) method. I don't think you can spoil a baby, especially when they are this young. I want to hold and squeeze him every time he cries and make it all better.The nurses here have three babies to take care of and it is next to impossible to tend to each of them if they are crying. Now that he is feeling better his monitor doesn't beep so much, and thankfully there aren't any high alert beeps anymore. The bad news about that is he gets no attention, even when he is crying, needing a diaper change, needing his pacifier, needing a snuggle. I wake up all throughout the night wondering if he is sad, I think about him crying and needing me, and hate that I'm not there every moment of the day for him. I go home and get a few hours of interrupted sleep, calling in every few hours to see how he is doing. I hope calling makes the nurses pay more attention to him. I have picked up a few more primary nurses which is great, they will be with him regularly so I can get to know them and they can get to know Everett. It helps me sleep at night. I know that there are many nurses here invested in him and love him dearly. I sleep a lot better when they are on.

I talked to the nurse practitioner today about getting a private room, or even one down the hall that is not next to the lounge and across from Amir, who cries all day and all night. This poor baby (Amir) is three months old and has no family here, ever. They don't even call to check to see how he is. I don't understand how that is possible. It breaks my heart. I wish I could go in and hold him myself, but I am not allowed.

If I can get a private room, I could stay throughout the night and be here literally. There is a door and blinds in the private rooms. There is just no way I can get sleep with an open hallway room with so much chatter, lights, crying, beeping etc., so I need to go home and get a few hours of sleep, I am running on empty for sure, I couldn't be more excited to go get Kristin from the airport today!

A sleepy smooch for all those checking in on me!

I just met with Chris from speech. His respiratory rate is really high so we can't even attempt to feed. He is working very hard to breathe again. She thinks he aspirated trying to eat. I've been begging to have only me feed him. I don't claim to know what I'm doing but I'm patient and have more time than the nurses do. He rarely chokes with me because I go so slow. I feel like having everyone and their brother try has set him way back. I really wish I was listened to, mommies do know best. I asked for two days to let me try only, and go slow and only bottle feed when I am here. The reason I am not trying to breast-feed because I can't control the amount that comes out.We, the speech pathologist and I, agree he needs at least 24 hour break. We will see what the doctors think. The only thing we can do to get his respiratory rate down is give him time to continue to heal. I know we need to push him, I'm the one that wants him home more than anyone here, if I'm not pushing him, he probably shouldn't be pushed. Extra discouraged... :(

Dr. Brooks and Melissa the nurse practitioner came by while speech was here. Instead of all having a wonderful conversation together Dr. Brooks said she would come back. She has told me this once before and never did. I just asked to speak with either of them and Melissa came. I let her know I don't want anyone putting breast milk on his pacifier, so he has one thing that he can thoroughly enjoy always without fear. I asked for them to not feed him from a bottle for 24 hours to give him a break. Most nurses aren't slow enough with the process which causes him to gag and choke. It's no wonder he hasn't taken to eating yet.  He has been extremely sleepy over the last 48 hours and I am assuming it's because he's working so hard to breathe. She said she was going to put the cannula from the bedside on, so he get some oxygen to help his respiratory rate. As much as I don't want him having another cannula on his face, I am all for anything that helps him get home sooner! 

:(