Vivienne Update
She has a PICC line in her left arm now, and they took out the other central line IV and 2 other IVs (yep, every little limb, but one foot, had an IV)
Took out respirator and back on high flow nasal cannula(they tried to ween her down on the pressure because she kept high SATing but when they did she had a lot more Apnea and Brady cardia episodes. . .so for now she is staying at a 4 at 21%-24%)
Anderson tube is also out (which provided suction and vented belly) and OG tube in (vents belly)
Just finished Antibiotics for pneumatosis on Monday and closely watching belly for increased NEC signs or symptoms
Still NPO (no food-just IV nutrition)
DRs hoping she can tolerate feedings again starting today so she can start gaining weight and growing more
She has two heart murmurs and will be doing an echo today to check the heart more fully
She also has another head ultrasound today as well.
They allowed me to hold her on February 14...really hold and snuggle her against my chest for over an hour. I finally felt that glimpse of being a mom to a newborn again. It made saying goodbye that much harder and I fell apart on Sunday as we left the hospital. I can honestly say I hate this. Yes, I know that hate is a strong word. But, I hate leaving Vivienne. I hate not knowing if she is truly doing ok. I hate leaving Jillian. I hate that this is stretching her at such a young age. I really hate that she hasn't met her sister yet. I can't wait for that day. There is SO much about this NICU experience that I hate, but we have also experienced SO much love that it has truly humbled and lifted us. I know I will never be able to thank everyone who is praying for our sweet little girl and our family. I can't even begin to thank everyone for the love they have shown us. We have been on the receiving end of so much service, generosity, and pure Christ-like love now for so very long that "Thank You" just seems SO inadequate. I truly wish you could see in my heart so I could show you my gratitude. It has been very humbling for me. Thank you! Thank you for the prayers on our behalf. Thank you for your love. Thank you for your friendships. Thank you for the cards, gift cards, gifts, meals, service, love and your strength. I hope one day I will be able to pay this forward. Thank you!
Heidi I remember being amazed at the strength of your faith since we were young girls. The first time I went to girls camp with you and you blew me away with your conviction, though my younger cousin I wanted to be like you. We have traveled some of the same roads, I too fought with infertility and all the hormone treatments and miscarriages, fostered 2 beautiful children for a year only to have the courts return them and deny adoption, dealt with Aubrey and Austin's cleft lip surgeries. I understand you hating the NICU, though Austin only stayed for month and then just came home with oxygen it was hard to be torn between children at home and him. Aubrey and Aurora couldn't meet him either but they had such love for him. I know Jillian is a beautiful strong spirit and such a blessing for you and Jake. Aurora who was just nearly 3 when Austin came early said something that warmed my heart and still does. She said Mommy give me lots of extra hugs and I will send them to the angels around Austin. He will feel them. (at that time I couldn't hold Austin yet) so in the perfectness of a child's faith hug Jillian a few extra times and have her send them to Vivienne's angels! I love you Heidi. Soak up those tender mercies as they come and know you have hundreds putting our faith behind you. Please contact me if I can help in any way.
ReplyDeleteLove, Rachel
I saw your blog on Ashley Cammack's facebook newsfeed.
ReplyDeleteI also had a baby girl back in Dec. 2011. She was born at 26 weeks and 6 days also weighing 2 lbs 6 oz at birth. She was born breech. I was suppose to have a c-section but my girl wouldn't wait and came bum first anyway.
She stayed in the NICU for 12 weeks. It was the hardest 12 weeks of my life. Always worrying every moment of every day and night how she is and if she misses me. One thing that helped me a lot is that in one of the blessings my husband gave me he blessed me with the gift of discernment (you can also pray for this gift for your self). I was able to pray anytime I was worried or anxious and know with out a doubt that my baby was in good hands and just how she was doing at that very moment. The stronger she got the easier it was to leave her each day(although I still had to pry myself away each day. If it wasn't for my two boys at home needing me I would have camped out at the hospital all the time)
I'll keep you and your sweet family in my prayers. If you need anything (talk have questions anything) just message me on facebook. Know you are not alone. There are some resources you can utilize as well that may help. If the nurses at the hospital haven't already told you ask them what resources are available. We received SSI for our little girl that helped pay for meds, clothes and other things we needed for our little girl. There is also a free NICU follow up clinic you can take her to after she goes home. They keep track of her development and offer other services as needed (ie. early intervention, therapy ect.)