The meeting we had yesterday was to introduce the pulmonary team to us as they could very well be an integral part of our lives for years to come and also to make sure everyone was one the same page with Natalie's care. We will now be having these meetings on a regular basis.
The doctors feel that although Natalie was doing remarkably well a month ago (at the time we were told she could be home in a matter of weeks) she has not been able to bounce back from whatever caused things to turn downward. They now feel that if Natalie survives she will need to be on a ventilator for years. If she improves enough we will be able to take her home on a vent but would need around the clock nursing care. Having a child on home ventilation is possible, but it is a huge undertaking and will require months of planning. She is also months away from being well enough to even consider bringing her home.
The pulmonolgist has followed many young children on vents and says that ultimately her lungs should not affect her quality of life. A person is born with only 20% of their lung tissue, so in the next 7 years or so she can make up a lot of progress. Should she want to climb Mt. Everest without oxygen support she will have problems, but in day to day life her lung quality should not be noticeable.
Now the plan is to work on getting her meds through an oral route to spare her the many, many IV attempts she has suffered through. We want her to be as comfortable as she can be. Other than that we hope with good nutrition she grows healthy lung tissue and improves.
Should her vent settings become low enough we will meet with the ENT team to plan a tracheostomy. This will allow her to be more comfortable, free her mouth for smiles and eating and allow her more developmentally appropriate growth. This is a decision we have struggled with but now understand it is in Natalie's best interest.
We were also asked to decide what life saving measures we want should Natalie suffer an episode requiring resuscitation. It seems some members of the nursing staff are concerned about the decisions we have made to prolong Natalie's life and want to make sure we are thinking ahead. I am going to keep my thoughts on this to myself as I do not want to set things in writing that I will later regret.
I told them it would be impossible for us to make a decision without being in the moment and knowing all the circumstances. It is an incredibly personal and painful decision that Steve and I need to make on our own, not in the midst of a care meeting. Right now when we look into Natalie's eyes it is clear that she is still with us and she still has the will to fight. From talking to her doctors it is still possible for her to eventually have a good quality of life. As long as all of that is the case we are fighting.
Right now we are struggling through a lot of frustration and anger. It is still so hard to accept that after suffering months of doctors predicting she would not survive Natalie was born with lungs to live on. We were elated to see her on C-PAP and were patient when the attempt failed. Her vent settings were so low she was barely on any support at all. By the end of the week things were escalating and no one knew why. I really believe that her initial decline was handled in a very casual manner and that more aggressive investigation may have made a difference in her outcome. To be sitting here now hearing that our best hope is for her to be healthy enough for a tracheostomy and years on a vent feels absurd. The entire meeting I just kept thinking "They are talking about my baby???"
We are looking into sending her records to another institution for review in hopes that another set of minds may think of something our doctors have missed.
The morning report today was good. Natalie made her way into the 50's for O2 last night, which is always welcome news. She was back up at 100% when I called but that was due to her cares/changing position and she was already starting to wean down. She also had another BM all on her own-Go Natters! Today she will be at full feeds and they can start fortifying with extra calories again. Her growth has halted over the past week or so but she had been on TPN during that time.
Her CRP seems to be responding well to the antibiotics. Wednesday morning it was 99 and this morning it fell all the way to 66. Die bacteria, die!
This one is for my Snoogle Sisters...when I saw her I thought "Natters has her own Snoogle!" (Snoogle Sisters are the amazing women I have been sharing motherhood with online since my pregnancy with Annie.) Cute puppy blanket courtesy of Aunt Meg and G-Mo.
A happy sight...Annie on her way out to stomp in puddles. Maybe I should start wearing a tutu to lighten my mood.