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Saturday, September 4, 2010

Attitude.


Okay so I thought that it would be a good thing to explain some of the medical things that Juliet has going on. She has a HUGE attitude and is very picky about some of her care. :-) She has been on an oscillating ventilator for most of her 2 weeks. She tried a CPAP machine for 2 days but then had to go back to the ventilator. She has an umbilicus line (arterial) that they can take blood from for blood gases to test her different types of levels and progress. She also has a PICC line that she can have 1-3 meds being delivered at any given time. And she has all her cords for monitoring heart rate, blood pressure, oxygen saturation, and breaths per minute. Which leaves her looking like a little cylon sci-fi creature. LOL! She was also on the bili lights to bring down her bilirubin levels until 2 days ago. She is fed through a gavauge tube about 7cc of breast milk every 3 hours. She only has a little residual stomach fluid left after 3 hours on occasion, which means that she is handling her feedings very well for 29 weeks gestation.

With all that going on she is a busy little girl. And all those things are what keep her alive. She has nutrients delivered through IV to keep her electrolytes, lipids, amino acids, and I am sure much more that I don't know nor understand keeping her healthy. On occasion they give her light sedatives to keep her calm. Every 4 hours they do "cares." This is changing diaper, taking temperature, cleaning out her mouth with a little mouth sponge, occasional sponge baths, checking her weight, changing linens if needed, and most important moving her position. Sometimes this is just a head rotation, or on to her sides. But a couple times a day they flip her back and forth from her back to her stomach and then later back again. When I can be there during this I get to help with some of it. When she was 3 days old she had a PDA surgery to close a valve in her heart. It went well and she healed quickly with no complications. Finally at 2 weeks old both of her eyes are now open. They have been fused since birth. So far it appears that she has her daddies shape of eyes. It makes me so happy because I think that they are beautiful and I have told Joe so many times that I hoped if we had a girl that she would have his eyes and eyelashes. I hope it stays this way but you never know.

As I said previously she has attitude. She is silent about it though. She isn't a complainer at all, she just is silently defiant. Much like her father. :-) She inch worms her way to the bottom of her bed, constantly having to be put back in position. She almost always poops right after her diaper change. She swings back and forth on her oxygen from to high saturation to too low saturation, mostly when she wants to be moved to a new position. BUT the biggest attitude out burst we have had was yesterday. She had been swinging on her oxygen again and the respiratory therapist thought it might be her tube was too far into her lungs so he pulled it back a bit. Sure enough her swings weren't near as drastic. The next morning (September 3rd) they looked at the x-ray of her lungs and saw that it needed to come out a little bit more. This fixed the swings pretty much entirely. So having had the Dr. call with my update early in the day, I knew she was doing well and decided to run my errands I needed to do. At about 6pm Joe and I headed to the hospital. We walked in and immediately noticed something was different about her. Our nurse for the night Karen said "Hi! Juliet has a surprise for you!" I knew something was different and then I saw it. She is back on CPAP!! However it was not because of a choice by any Dr. or Respiratory Therapist. She had been laying on her stomach and had apparently decided she had had enough of the ventilator and so she pulled her head back and turned it the opposite direction, which I am told takes a lot more effort than it appears for a 2 week old micro preemie, and yanked the tube the rest of the way out. I think she realized "hey! these people have been moving this tube out, why don't I just finish the job!" So they decided to try CPAP before re-intabating her. Well here it is almost 24 hours later and she is still doing well. My hope is she keeps doing well.

If she stays on the CPAP for another day they will remove the umbilicus line since she won't need as many blood gases, and it is better because it is a risk for infection while it is still in. This is exciting because IF this all happens this weekend I will be able to hold her on my chest and do skin to skin for the first time!!!! I pray for this to happen. IF her feedings keep going well over the next week than they will pull her PICC line out and she will be able to wear clothes! Its all a lot of IFs, but I will take them. Even if these things don't happen on that time line it is nice to know that there is hope for them. I haven't allowed myself to even consider these things happening on a certain time frame. I just want her to get the umbilicus out so she can be swaddled in blankets.

So that is the "medical" update. She doesn't have any real big issues going on, she just has a lot more growing to do so we can reach her future big milestones. I pray no issues arise, and we are reminded regularly that things can always change for the worst quickly. We are thankful for all the prayers and support. She is such a great blessing and a huge miracle in our lives. Daily I count my blessings for being given the opportunity to be her mother. Let me know if you have specific questions and I can try and answer them . :-)

7 comments:

  1. OH, what a wonderful update! Thank you!

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  2. I go to church with Susie and am thrilled to hear this update. I will continue to pray for her. She's awesome.

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  3. That's wonderful!!! I pray for her every day, and am thrilled with each step forward she makes. I'm Susie's friend in Wyoming, so that's how I've heard of your sweet miracle.

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  4. So exciting!! I will keep praying for her continued progress.

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  5. YEAH Juliet! YEAH Brittany! YEAH Joe! And YEAH TJ! YEAH for the Adams Family! SO exctied she is doing well!

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  6. I'm so happy she is doing so well. We too pray for her and for you. Time for another update. We love you bunches. Grandpa

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