Counting Down

Finally caught her in her "one brave chick" onesie before she coated it with goo. Thank you again Emma!

Friday the neonatologists traded off. I went to say thank you to Dr. L and she gave me a big hug. She was thrilled with the progress of the last 2 weeks and said that she never would have predicted it. I love seeing a joyful neonatologist!

We now have Dr. D, and he is wonderful. As an added bonus, we get him for 3 weeks rather than the usual 2. When we last saw him Natalie was recuperating from NEC and on the oscillator. Her MAP was a stunning 22. This was in June. Dr. D said he would see us in September and all I could say was "I hope so." She is an entirely different baby than the one he left. We were catching up and he remarked that when he left service over the summer he was just hoping to have a chance to work with her again. Now here she is blowing everyone away with her strides.

He is not overly eager to turn down her vent settings. The sense of urgency is gone now that she is on pressures that will allow healthy lung tissue to grow. She keeps having stellar blood gases but they are not moving on them. One day she had a CO2 of only 40 (the lowest of her life) and they had no choice but to go down on her PEEP. Hmmm, someday I am going to take the time to explain all these vent terms.

Saturday night I called the NICU around 2am and Yesef, our favorite fellow, answered the phone. Doctors never answer so I was thrown (plus it was 2am...I am easily confused that late). It ended up being good timing, as Ms. Natters had just spit out her NG feeding for the 3 time in 24 hours. It is impossible to say if it is reflux or her ET tube stimulating her gap reflex. One of the hardships Natalie faces right now is her tube makes her cough and gag quite a bit. If she happens to have milk in her belly at the time she will spit up.

They discontinued the NG feeds for now. It was disappointing as up until Saturday they had been going really well. She needs every cc of milk she can get though and can't afford to spit it out. Now we are holding her to ND feeds until someone comes up with a new plan.

In nutrition news Natalie lost weight 3 weigh ins in a row. Fantastic for a high school wrestler, not so good for little babies trying to grow and heal. This was about the same time her rate was lowered on the vent. I think she just needs more calories now that she is doing more of the work of breathing. There is a limit to how much fluid she can handle (or her lungs will take on more edema) so they finally made the move to fortify her milk. It is a teeny half teaspoon of Nutramigen formula per 100cc of milk. Hopefully it is enough of a boost. Even though it is a very simple formula created for babies with colic,she has had increased gassiness and, well, explosive poo since starting it. At least Steve will have funny diaper stories to tease her with down the road. Oh, and I get lots of extra Natalie laundry, which always makes me smile.

On a not so funny note, Sunday a nurse noticed that the cuff on her ET tube was not inflated. The whole reason we were experimenting with NG feeds was that the cuff would prevent aspiration. No one knows how long it has been deflated, despite the fact that the pressure is supposed to be checked 3 times a day. sigh. The NICU rarely uses cuffed ET tubes because they will only put them in babies over 3 months of age (adjusted, not actual) and as you can imagine the NICU is not overflowing with 10 lb babies that are intubated. I think when things are that out of the ordinary it is easier to have an oversight. Her tidal volumes have been fine without the cuff so it remains deflated. (The cuff is like a small balloon that wraps around the shaft of the ET tube. There is a catheter that runs down to the cuff and is used to add or remove air. It can be used to completely block the airway not already occluded by the ET tube itself. That's the best explanation I can give at midnight).

They will go down on the iNO by 1ppm a day until they reach 1. They plan on holding her at 1ppm for a few days to give her body a chance to bring up her natural nitric oxide production. THEN she is eligible for the tracheostomy. Dr. D contacted the ENT folks Monday for the first time and they should be looking at her in the next few days. I am eager to meet them as they will be long term members of her medical team. I am also tempted to bribe them to get her into the OR as soon as humanly possible. What do you think would motivate an ENT surgeon?

Apparently the ENT asked Dr. D if he wanted the G-tube done at the same time. I had asked about this months ago in the hopes of sparing her an extra time under anesthesia. They told me it is against their policy. Now they are willing to do it but I am not if it means waiting around for both the ENT and GI OR schedule to magically align. I do not want this trach coming one more day later than it absolutely has to. Besides that, the neos still are not sure what route they will take for GI surgery and we are not waiting around for that call to be made.

I was not able to get the the NICU until late evening yesterday and was so eager to see my little one. She had a long afternoon-they did the echo on her heart and that is one of her least favorite procedures. Hours later she was still annoyed. I patted her back and did my best to make it better. There are no words for how painful it is to not be able to scoop her up and comfort her the way a baby should be. When we get home and I have her to myself I may rock her for one straight day. At least.

When I came back following shift change she was wide awake and content for quite a while. I showed her the new toys Annie and I picked out for her and she showed a little interest. Natters makes it pretty clear when she has had enough so eventually I swaddled her and she went right to sleep.

Today (Tuesday) things are still moving along. Her blood gases remain stable but her O's are up and the iNO keeps coming down. That seems to be the theme of the week. Once again I could not get in until late and she slept through most of our visit. When she did wake up she had a bit of a smile, but I don't know that I would call it a true social smile. Either way, it was sweet.

Oh, and she had her first real tub bath! We made an attempt a few weeks ago but she had a major desat and the nurse was nervous. This time the nurse undressed her, wrapped her in a blanket and then transferred her to the tub. She then removed the blanket and Natalie loved it. She was so relaxed she fell asleep and was super drowsy the rest of the night. I really wish I had been there to see it. One more thing on the list of "why this stinks." List was formally called "why this sucks" but I thought people may be offended. It is my way of writing off sacrifices such as missed vacations and birthdays, missed time with Natalie, missed opportunities with Annie, etc. I put it on the list and try to let it go. That lets me focus on the true problems, ie not oxygenating.

Still no official report on the echo. We are also waiting for a consult from opthamology. When it was discussed at the care meeting they put it pretty far down the list. The nurse present said she had never noticed what I was describing, so I think they went with her interpretation over mine. When Dr. D examined her on Saturday he understood my concern and moved it up in priority. My fear is that there is some window of opportunity to correct her eye issues and I don't want it missed because people can't see past her lungs.

I have been holding my breath waiting for firm plans on the surgery. It is so close but I know how quickly things change in the NICU.

One of the incredible things I have learned from this journey with Natalie is how adaptable we can be as parents. Did I ever write about the first time we discussed a trach? Natalie was 4 weeks old and very close to extubation. We had a lot of nervous excitement but with it fear that she would fail the extubations and go back on the vent. I asked Yesef about the possibility of her eventually having a trach and I could barely form the words. It was more a whisper than a question. I was only asking because I wanted to hear that I was being silly-of course she would not need a trach-look how well she was doing! Yesef did not smile or offer me reassurance. He very quietly told me it was unlikely but a trach was still on the table. I cried. For weeks every time the subject was broached I struggled to keep my composure. I had a lifelong fear of tracheostomies and could not imagine my sweet girl needing that level of intervention. Let them cut my babies throat? I was horrified.

Now? I pray for the day Natalie has her trach. I look forward to it as a million Christmases wrapped together. It is another sort of birthday. I hope it will give me parts of motherhood that have been missing these last months. I will be able to pick her up, something that is so natural yet out of my reach with an ET tube. We will be able to hold her EVERY day once she is healed and not have to take turns. She will be able to move her head and use her mouth for pleasant things. My sweet girl will not make herself sick with every position change. For the first time in her life she has a chance at being comfortable. I know when it comes time to send her to the OR I will be standing there with the fear every mother has sending her child to surgery. I will also be celebrating this very special milestone for Natalie.

I do not fear the trach care. Maybe that is ignorant of me, but we absolutely have to master caring for her. There is no other option so I will not waste energy fearing the inevitable. My only trepidation is that people will see the trach and not sweet Natalie. That her medical condition will be dominate and who she is as a person will be overshadowed. I have no intention of hiding it or treating it with shame. Her trach will simply be a part of her, a part that we are hoping brings her to a whole new level.

Say it with me-"Embrace the trach!!!!"

This week has been a period of adjustment for me. As we move into the more chronic phase of Natalie's treatment (and hopefully it will remain this way), I have more time to think and look ahead. So much of the past few months has been trying to get her through each day. When your focus is on survival it is easier to push aside thoughts of the future and what it may hold. We were just hoping to have a future.

Now we have a long list of issues that need to be addressed in addition to her more critical health problems. Her eyes, kidneys, heart, foot and digestive system all need attention. Her head will most likely need reshaping and the ET tube has done damage to her jaw and gum that I have not been able to confront yet. No one can tell us what to expect from Natalie developmentally and that uncertainty is sometimes paralyzing. I know eventually I will find my footing and create the attitude and plan of attack needed for what is ahead. Until that happens, I am just a mother scared for her child and questioning my abilities to see her through all that is coming our way. I am her mother, so there is no question that it will happen, but my Lord what an incredible task this is. It seems we've walked a million miles to just to reach the mountain, and now the mountain itself must still be climbed.

I am a little reluctant to talk openly about my emotions these days, but I want this blog to be as honest as possible. I would hate for another mother in my position to read this and think that I don't have dark times and frustration. Parenting a critically ill child can be an isolating experience, so I do not want to cause another parent harm by leading them to believe I am chronically happy through this. Yes, my overriding feeling is gratitude that Natalie is still here with us today. I have met many mothers over the past few months who have said goodbye to their precious babies far too soon. We are not out of the woods, but she is with us still and every fiber of my being knows how incredible that is.

I would be dishonest though if I said that I did not also experience defeat, jealousy and trepidation. No one is meant to go through this. I have no special ability that allows me to watch my child turn blue several times a day and not be wrenched with dread. I am as normal a mother as anyone else and finding my way through is the hardest challenge I have faced. The past nine months have been unreal in so many ways. It is a constant effort on my part to not look back because I would collapse under the weight of all we have endured and lost. There are happy memories mixed in, but those are bittersweet and quickly lead to painful thoughts of how close we have come time and again to losing our daughter. We have flown from one extreme to the other....terror in the OR when she was born, elation as she exceeded everyone's expectations then falling so low a week later that we were told they were running out of options. One day it will get sorted out and we will have a way of looking at this time in its proper context. For now there is no spare energy for making my emotions any more than what they are at the moment. I ask for patience with this as I am very much a work in progress.

I wish I had some great philosophical thought to close this post with, but I am tired and I know you would much rather see pictures than hear me prattle on. So, here are the happy things that keep me putting one foot in front of the other.

Counting down the nitric!!!! Hoping I can be there when they roll the tanks out.

Monday

Tuesday

Her vent settings, just for memories...all those wavy
lines are Ms. Natalie breathing! For what it is worth, she was on her back and upset so her O2 and respiratory rate were up. She knows how to get herself flipped back to her tummy.

Snuggles with Daddy

Just being cute and sleepy.

Annie, because this girl makes me as happy as she looks.