Yesterday as I sat blogging and enjoying the morning before heading to the NICU, I had no idea what an eventful night/day Caroline was having at the hospital. When I had called in the night before around 2:15AM I was told everything was fine... but soon after that everything went downhill for my baby. The doctors were so busy that they never had a chance to call before we got there around 11AM - and they apologized profusely for that. From about 2AM on Caroline had 25 apneas and bradys (or A's and B's for short). Her urine output had drastically increased and tests showed that it was almost all water. Meanwhile her sodium continued to increase, a sign that something was wrong with her kidneys.
During rounds, and later when the doctors came back to talk to us for about an hour, we were told that Caroline now has two major issues: NEC (or necrotizing enterocolitis) which is now on the back burner and diabetes insipidus which is the main area of concern. The diabetes can be caused by two different things - she could have something wrong with her pituitary gland which would mean that the hormone needed to make the kidneys do their job is not being released or she could have sustained some sort of injury to her kidneys either during labor, delivery or when she got sick from the NEC that is causing her kidneys to temporarily not work. Of the two reasons we are really hopeful that it is the latter as that would mean she would get full use of her kidneys as she begins to heal from the NEC.
Her x-rays (and she has had a scary number of them!) are showing that the NEC is not worsening, but I would like to see more improvement than just maintaining the status quo. In a few more days we should know something as NEC often takes 7-14 days to clear up with antibiotics. Once it is cleared and food is reintroduced we will be watching out for scar tissue in her bowels - if there is a lot of scar tissue and she is unable to pass food then she will need surgery to remove that portion of her bowels.
Last night Caroline received her first surgery. Her veins are not cooperating so she was going through IVs every day or two - and she needs a lot of them for her fluids, medications, blood products and access to her blood for tests. They again attempted a PICC line yesterday which looked promising, but then closed shut immediately. Last night Ty and I consented to a minor surgery to insert a more permanent IV into her body near her collarbone - this is called a subclavian line. The procedure itself only took about 10 minutes, while the prep and clean-up took a little longer. I was very stressed out about the procedure just because the idea of someone cutting into my baby is not pleasant, but in the long run I know it is better for her because it means that they do not have to keep poking her every few hours for some new test. Also, I got to briefly hold her before the surgery which was wonderful since I hadn't been able to do that since last Wednesday afternoon.
Other things:
During rounds, and later when the doctors came back to talk to us for about an hour, we were told that Caroline now has two major issues: NEC (or necrotizing enterocolitis) which is now on the back burner and diabetes insipidus which is the main area of concern. The diabetes can be caused by two different things - she could have something wrong with her pituitary gland which would mean that the hormone needed to make the kidneys do their job is not being released or she could have sustained some sort of injury to her kidneys either during labor, delivery or when she got sick from the NEC that is causing her kidneys to temporarily not work. Of the two reasons we are really hopeful that it is the latter as that would mean she would get full use of her kidneys as she begins to heal from the NEC.
Her x-rays (and she has had a scary number of them!) are showing that the NEC is not worsening, but I would like to see more improvement than just maintaining the status quo. In a few more days we should know something as NEC often takes 7-14 days to clear up with antibiotics. Once it is cleared and food is reintroduced we will be watching out for scar tissue in her bowels - if there is a lot of scar tissue and she is unable to pass food then she will need surgery to remove that portion of her bowels.
Last night Caroline received her first surgery. Her veins are not cooperating so she was going through IVs every day or two - and she needs a lot of them for her fluids, medications, blood products and access to her blood for tests. They again attempted a PICC line yesterday which looked promising, but then closed shut immediately. Last night Ty and I consented to a minor surgery to insert a more permanent IV into her body near her collarbone - this is called a subclavian line. The procedure itself only took about 10 minutes, while the prep and clean-up took a little longer. I was very stressed out about the procedure just because the idea of someone cutting into my baby is not pleasant, but in the long run I know it is better for her because it means that they do not have to keep poking her every few hours for some new test. Also, I got to briefly hold her before the surgery which was wonderful since I hadn't been able to do that since last Wednesday afternoon.
Other things:
- Caroline now has a catheter to accurately measure her urine
- Her poop is looking better - no blood in it at all yesterday
- We met with a pediatric kidney specialist who is closely monitoring Caroline
- Depending on tests today, Caroline may get an ultrasound (to look at her kidneys) and/or an MRI (to look at her pituitary gland) on Monday
- Caroline may also have her eyes checked out on Monday because of some reason I can't remember
- As of 7AM this morning, Caroline has only had 2.5 apnea issues (2 were severe) but they determined that it was caused by a kink in the nasal cannula (this was placed yesterday, in addition to giving her constant caffeine, to keep the A's and B's at bay). Also her sodium levels have come down a couple points and her potassium has increased. her blood sugar looks good and she may not need any more blood gas tests because her carbon dioxide and oxygen levels seem in balance.
- She still has a vacuum tube in her throat that is pumping gas and bile out of her tummy (this helps with the NEC)
- There is a test that can diagnose and treat DI but because drug companies do not make any money off of it there is currently a national shortage. An order has been placed but we may not ever get it. The doctors at Dartmouth were not very happy about this and neither are we.
Aimee,
ReplyDeleteI am praying for you guys! Hope all works out and that she is healthy soon! My brother and sister both developed NEC when they were first born. If you need someone to talk to, I am here, but my mom would also love to talk! She remembers more of the fine details than I do. I know that my brother ended up having to have surgery and has lasting effects from it, but is healthy and they caught it early with my sister and she has no lasting effects from it. Sending well wishes your way and cant wait to meet baby Caroline! :) Love, Heather Alice
Aimee, I truely wish you and Tyler weren't having such a stressful and difficult time with your little Caroline. I'm thinking about you guys and hope all goes well. Your baby is in good hands and I'm sure all will be fine and you will be home to cuddle your beautiful little girl!
ReplyDeleteVal
My son had NEC after birth also. Prayers are with you.
ReplyDeleteI used to teach w/Katie...you have the prayers of many people from the school. It is hard for parents but am so glad medical technology is in place to help her. XO
ReplyDeleteWe are all thinking of you and Tyler and baby Caroline so much, I hope you can feel our love and support.
ReplyDeleteJoanie
Aimee, I also hope and pray that you get some good test results. I'm glad you had a chance to hold her. I'm sure you and she both needed that.
ReplyDeleteOn a lighter note, Jeanne brought Fred to Martha's birthday at Stuart and Emilies camp today. He was showered with attention and enjoyed himself quite a bit. I think Jeanne likes him quite a bit.
-Darlene
Our hearts continue to go out to you. We are continuing to pray for Caroline's strength and hope and peace through all of this for you and Tyler.
ReplyDeleteLove,
Mary and family
Dear Aimee and Tyler,
ReplyDeletePraying for your precious little one constantly.
xo aunt laura