Monday, August 30, 2010

What Plan?

Natalie had a busy weekend.

Thursday night was the big extubation which led to her coding. A few hours later, Natalie self extubated again but this time her nurse was right next to her so things went very smoothly. They increased the size of her ET tube to 4.5 and thought "that should hold her." Ha! Saturday night she coughed it out AGAIN. Three self extubations in three days.

In addition to all that, it took from early Saturday morning to Sunday afternoon to get a good ND tube placement so she could eat again. They wanted to give her a day off after "the incident" and she ended up with several days off. They are slowly increasing her feeds because now they are afraid of her (this is according to her nurse).

Despite coughing out her tube Natalie is doing well. On Saturday her rate was decreased to 55 breaths per minute, Sunday down to 50 and then this morning to 45. She has not had such low rates in ages. The last week or two before she went back on the HFOV she was at 60bpm and since coming back to the conventional vent she remained at 60bpm. That is actually the highest setting possible so seeing her come down a bit is wonderful.

To sum up, since last week her vent setting was changed to a less invasive mode (pressure control/pressure support), her PEEP was reduced from 8 to 6 and her rate from 60 to 45. All while having stellar blood gases. Not too shabby. Conversations have gone from "we don't know when we'll be able to get her to "trachable" settings to "oh, these pressures are perfectly reasonable for a baby her size." Sigh!

So last Wednesday we met with the outgoing neonatologist, the incoming one and the surgeon who did her penrose drains (Dr. Lee). Everyone was in agreement-funduplication and G-tube in 3 weeks, recovery and then trach when she was ready.

Saturday we ran into the new attending in the hallway and she said she was rethinking things.

Basically they do not want to do the fundoplication if they can get away without it as it is an involved surgery and is a significant risk/recovery. While they take the time to debate the issue, we asked that they move ahead with the trach. I absolutely do not want to have that pushed further back because of the GI surgery. The original thinking was to do the GI surgery first because if her respiratory needs go up dramatically during her recovery then they want her to still have the ET tube. That would be wonderful, but I am not keeping a tube in her throat for 2 more months just in case, especially if there is not a concrete plan in place.

Natalie has helped push that thinking along with her frequent extubations. The attending is talking with the ENT and pulmonolgy people to get their input on the tracheostomy. She feels her settings are perfectly reasonable for a trach but they have to agree.

So now we wait for a new plan. I am very much hoping the trach happens soon. I believe with all my heart that Natalie will be a much happier baby. Her favorite fellow (Yesef) said yesterday "I can not wait-then I can pick her up and carry her!" The trach is so much more stable than the ET tube. Everyone will be allowed to hold her. She can come off of sedation. She can stop gagging every time she wakes up. The list of positives goes on and on.

In non-medical news, we were able to get some good snuggles in last week. It was the first time I held her and had some measure of privacy so I actually sang to her while we rocked (mine is not a singing voice that should be busted out publicly). I sang "You are My Sunshine," "The Rainbow Connection" and an assortment of made up Natalie songs. It was one of those evenings I will never forget.

Speaking of music, Natters really likes her classical CDs. We are fairly certain she will one day be a concert pianist. I decided this week we should mix things up and add some mellow contemporary music. I can not wait for Natters to meet the Beatles!

We have not been able to hold her since Wednesday as her life has been a little too exciting to tolerate extra time out of the crib. I am itching for Steve to get home from work so I can go get my hands on my baby girl.

Natalie after the fourth and final attempt at placing an ND tube. We are looking forward to seeing her face without all the tape!

Natters swaddled and tuckered out. Yes, she has new bald patches from IVs. Some day we are going to grow her hair down her back just because we can.


  1. Positive thoughts and prayers your way! I can't WAIT for Natalie to get her trach..I think for all of us around the world who love Natalie & you, it will be a DAY of celebration! Stay strong mama!

  2. she is beautiful! I love the monkey swaddle blanket:) Have they discussed a GJ tube? That is an alternative to the gt/fundo combo. If she outgrows the reflux over time it can be pulled back to a gtube. I hope she has a quiet week!

  3. Go Natalie Go! What an amazing little girl. She is definitely one strong little warrior! Hugs to all of you!

  4. Yea for Natters. Looks like she is on her way. Love that you can hold her. Keep these posts coming. Cant wait for the next great update!!!!!