Tuesday, September 28, 2010

A long week and it's only Tuesday

Over the weekend the doctors assured us patience was the key and she would slowly improve, even though it might be a little trickle at a time. I tried my best to accept that. The steroids were not budging her FiO2 at all but her blood gases remained good. My patience wore thin though as she spent more and more time at 90-100% O2. Sunday night I could not sleep. I kept going over in my head what I wanted to tell the doctor and I simply could not shut out the fear.

Monday I had our first parent day at Annie's preschool. It was very sweet seeing her class in action and having play time with her. I then went to the hospital where Natalie was requiring 95% O2 but only sating low 80's.

Her nurse was on break and the babysitter could not tell me much. I stood at the glass and glared at the doctors on rounds. It is a cliche, but there have been SO many times in our NICU stay where I have had to suppress a Terms of Endearment Shirley Maclaine outburst from surfacing. I know I will be less successful at conveying my concerns if I am crying or inconsolable, so I did my best to get a grip. Luckily our nurse yesterday is a total sweetheart and great at distracting me. She had a student with her and after about 15 minutes of talking about toddlers I was calmer and ready to make my case.

We had ruled out infection, edema and the steroids did nothing. My fear has been that the surgery aggravated her pulmonary hypertension and that the doctors wanted to wait things out rather than escalate her therapy by adding a new med. I know there would be extreme reluctance to resume nitric oxide. Rumor has it that Natalie alone consumed 1/3 of the nitric oxide used in the NICU this year. At the same time, I did not want to wait it out if she was going to be so close to 100% O2. There is no wiggle room if she gets sick and that level of O2 is simply not healthy.

I was fortunate that the doctor had reached all those conclusions on his own before we talked. Once again I was spared a dramatic outburst to make my point. He said he would request a consult with cardiology, get another echo and see what they thought.

I was able to hold Natalie, although she was agitated. Just as she fell asleep they came to perform the echo. This is about Natalie's least favorite procedure. I left to pump and Steve stayed to hold her hand. Usually we wait 2 days to hear back on an echo. By the time I was done pumping Steve was outside her door with the full report.

First, she loved having Daddy with her for the test. They joked that they were going to write an order that he must be present for all future echocardiograms. She actually fell asleep with him holding her hand.

There was no evidence of worsening PH. That is great, except now we still do not know why she is requiring so much O2. The cardiologist (who happens to specialize in PH) did not feel she would benefit from iNO. Instead he increased her sildenafil (Viagra) dosage. If she does not improve he will look into further treatments.

Once that was over ENT came in to perform her first trach change. Poor baby. It went very smoothly and they say she has healed nicely.

During all this time, Natalie was requiring large amounts of oxygen and just could not get comfortable. Steve and I had to take turns leaving the room. It was just too stressful watching her at 100% and only sating in the low 80's.

The nurse decided to get her blood gas before trying to get her to sleep and that is when things turned around. Her CO2 was only 32. That is way, way too low. I am going to skip the technical parts, but thanks to a lot of discussion between the respiratory therapists and doctors her settings were tweaked and she slowly improved. Sometimes the right person shows up with the right idea just in time.

She was still agitated but it turns out she really likes being tapped on the chest with a face mask (the cushy kind used for hand bagging). This is called pulmonary toilet, or PT. She just melts and relaxes. By the time we left she was down to 86% and sating in the 90's. Who knew you could be grateful for 86%?

Last night she was 80's to 100% again. Her CO2 seems to be under control and they have gotten her down into the 70's today. We are very hopeful that this is a turning point but of course know better than to get ahead of ourselves.

Today is Ms. Anneliese's 3rd birthday. So far she has had a wonderful day that has been just for her. I am not going into the hospital until after she is tucked in.

Thank you for your continued prayers and support. I feel like I am held together by paper clips and Elmers glue right now but am hopeful that this week will bring good things for Natalie. For starters, I now intend to hold her every day. While she had the ET tube it was dependent on her stability, but now she is free. I know it will take her some time to get used to it, but I think she will be a snuggle bug. This also means that grandparents can hold her as well. I look forward to her family getting to know Natters that much more and finally get her in their arms.




11 comments:

  1. Hang in there...you have been such good parents and great advocates...that is why Natalie and Annie are doing so well. Kudos to you all for being so diligent and yet so patient.

    ~Lynda Baumer
    (one of Grandma Karen's friends from Excellus)

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  2. You poor thing. You have to endure so much stress. I honestly don't know how those paper clips and Elmer's glue are keeping you together. I am happy to hear that things are improving. My prayer group met again today and we all prayed for Miss Natalie. She is always on my prayer list and in my heart.

    Kisses and hugs to Miss Annie!

    Hugs,
    Donna

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  3. Happy, happy third birthday Annie!

    You truly are a remarkable mom! I am very impressed at what you have been able to hold yourself together through. So grateful that you have such good nurses who are willing to help by talking to you and going with their instincts to do things at a certain time.

    Congrats on the great echo! Way to go, Natalie! And Steve. =)

    So proud of you for giving Annie her day. It's so hard when you're torn between wanting to give your all to one child while you desperately ache to be with the other at the same time. Hoping YOU had a great day with Annie too and are having a great snuggle with Ms. Natalie.

    Always a prayer in my heart for the Teegarden family!

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  4. Still thinking about you guys...I just wish there was something I could do. You guys have been through so much. Happy bday Annie and seems that she and viola r following the same path. She's also in dance..they would probably have so much fun together. Lots of love your way and always always thinking about you..hugs

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  5. Happy belated birthday Annie
    Our continued thoughts and prayers are with you all.
    My heart melted when you talked about Steve holding her hand. That is incredible.

    xo

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  6. Thinking of Natalie and hoping that she has been doing well over the last few days. Thank you for your updates. How are you holding up? Be patient and brave, everything will work out well. I was trying to find your e-mail address but it isn't posted so I'll leave you mine if you want to chat (cabostik@hotmail.com). Gemma has been ill with a cold but scheduled to get her trach next week. I just wanted to let you know that I'm thinking of all of you and hope everything is going ok. Take care, Amanda (gemmasmom)

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  7. I am not sure how I even found your website, but I have a grandaughter who is also fighting many battles. Your site must have come up when searching the web. Now I follow Baby Girl Tee, as well as addisonsallegory.com. That is our amazing 6 mos old who has been home only 6 weeks of her life. As a grandmother, I must say that you and your family are amazing. I see my son/daughter-in-law, going thru many of the same things - and it is a real test of your faith, our faith and the faith of all of our friends/family. I will continue to keep you and Nats in my prayers. Every a.m. I check on Addison and then on Natalie. The power of the internet has connected us for some reason. Stay strong and I will continue to pray for you and your family. If you have a chance, check out our website to see the similarities. www.addisonsallegory.com.

    grandmarama

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  8. Happy Birthday Annie! Bitter sweet days, 4 of my children had thier birthdays to celabrate while we lived at the hospital. We always celebrated even if I had to drive down and make a go of it a week later. On another note, if they are tapping her chest and it is helping to change the o2 levels could it mean that there is more secrations that are in the trach area? This seemed to plauge Jer and would often be why he was Sating low. There was a medication that they used to get deep into his lung tissues to keep the secreations from building, its called Ipratropium Bromide evey time they took it away he would get agittated and have to have higher oxygen settings. We were finally able to get him off but it took time to wean him from it. I know they do not like to use it much because it can cause growth stunting and of course thats what we battle now these days. Paper clips and glue yep I hear ya but I know you will make it cause you just gotta and your made of more stuff then you know, keep faithful and hopeful and peaceful your doing wonderful. Snuggling is amazingly helpful and rocking is great for the inner workings of the brain. Hug the Hubby and go on a date too. Praying for your family.

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  9. Hey thinking of you and Natalie! We love you both and praying for you both. <3 Amber & NeVaeh

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  10. Happy late Birthday too Annaliese ;)

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  11. You and your family have been in my thoughts a lot these last few days. I am praying that things are going better and that Natalie has turned a corner.


    Cassie (tara_mommy09)

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