Actual Age: 28 weeks (math error last week)
Adjusted Age: 16 weeks
Not so fast- home sweet home for Reagan!!! Yeah!!! Not Eden though.... We have had a VERY eventful, stressful week.
Reagan is tonight spending her second night at home. Yesterday's discharge and getting set up with nursing at home was crazy. Lots of people in our house and lots of adjusting to the new situation. Reagan did great- the ride home was smooth, meeting her doggie was good and getting adjusted went well. She also slept for 11 hours last night!! Only a few interruptions with a diaper change and desatting due to her nasal cannula being out of her nose. Scott and I however did not sleep great, we had Eden on our mind and keeping an ear open for Reagan. Hopefully tonight will be a little better. Having nurses here is different, but they are very helpful and willing to do whatever they need to for Reagan.
Now on to our precious little sweet pea. Eden is sick again. Her pulmonary hypertension is causing her much trouble. Last night was VERY scary because she needed 100% O2 and extra sedation throughout the evening and night. We now have three medications on board for her PH and are praying this works. She is also being sedated to help her shortness of breath episodes, we are working very closely with a Integrative Medicine and Pain/Palliative Care provider to manage her need for pain medications. The goal is to have her comfortable but not completely snowed. This will help her breathe easier and stay calmer when an episode arises. We also found out that she has tracheomalacia and bronchomalcia. This means that the walls of her trachea are floppy and she has weak cartilage in the walls of her brochial tubes. Therefore when these all collapse she has an episode where she cannot breathe even despite being at 100% O2. Our hearts just ache watching her in pain and we would do anything to take her place.
PLEASE, PLEASE pray for Eden this week that she will get better and her PH will miraculously go away. Please also pray that Scott and I will have the strength and guidance to make the right decisions for our babies.
I have been reading you blog since before you had your precious girls and have been checking back all the time since. I dont often get a chance to comment but they are both in my prayers. I will pray tonight for Eden and good luck for another good night.
ReplyDeleteI found your blog from the special needs board on the bump. I continue to think and pray for you and your precious girls. I also wanted you to know that our son, who has a heart defect, also had severe bronchiomalacia and mild tracheomalacia. He also had those episodes you are describing...very scary. He had a surgery done to tack his airways to his sternum, which was the only thing that saved us from a trach and got us home after a 99 day stay in the hospital. It is called a bronchiopexi. It was pretty experimental in that our surgeon had never done a full pexi of the bronchs before. I don't know if your Eden is strong enough for surgery, but it is something to keep in mind.
ReplyDeleteI keep you and your family in my prayers! How wonderful to have Reagan home but it is so bittersweet.
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ReplyDeleteI've been reading your blog since you had your beautiful girls, I found your blog from the October board on the bump. I haven't commented before but I just wanted to say that your family has been in my thoughts and prayers. So happy to read that Reagan came home and I look forward to reading about Eden going home! Thinking of you all tonight.
ReplyDeletehttp://www.ourwelladjustedfamily.blogspot.com/
So happy to hear Reagan is home! Praying for both the girls to get bigger and stronger and healthier :) Stay strong Momma, you are doing a fantastic job!
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