We got back from Austin late Sunday night. Since we had not seen our little girls in a couple of days we went to the NICU to see them as soon as we could. We are now trying to get back into the swing of things around here. My mom stayed in Austin so now I am home alone until Thomas gets home from work. I am finding lots of stuff to do to pass the time. Good friends from our church come visit me or I go out to lunch with them. I have been hanging in there with all that has happened. Things will get better as time goes on. As they say time heals...
Update on the babies...
Today the babies are 3 weeks old. Time has flown by. They seem to be progressing along slowly. We met with a neurologist yesterday who spoke with us regarding the babies brains. He talked to us about the different procedures they can do to help with the swelling and with the fluid that is going into little Ashlyn's brain ventricles. He also discussed the effects that can come from what they are experiencing with their hemorrhages. He said that a grade 2 or higher will almost always have some type of effect on them, how much damage will only be determined by how severe it is and only time will tell. We pray that the damage will only be minimal, but again it is up to the Lord at this point. There is nothing we can do but love them and be there for them.
Haley is now getting 4 ml every 3 hours of my expressed breast milk through the tube. She is tolerating these feeds really well. Ashlyn is still getting only 1 ml. Rachel has not been tolerating any feeds due to her most recent infection. She has been getting antibiotics for a couple of days now and we hope she will be able to get started back on the feeds again soon. Haley pulled her breathing tube out today, but she is ok. It worked out for the best any way as she needed a bigger tube. She was having a problem with air leaking out of her other tube since she has grown. The doctor is still trying to wean them from the vent. Our little girls have had a hard time going down on the vent when they move around a lot. I feel that they are doing better than they were even a few days ago. I think they are getting stronger each day. We are so grateful for them and that they are still here with us.
Amanda and Thomas, I am very happy to hear the news about the girls. They are three weeks old today and hanging strong! Don't worry too much about the effects of hemorrhages 2 or higher. I know preemies who had 3 and 4 and are doing perfectly fine. You will be amazed with the power of healing they have! Stay strong and continue to be the great parents you are. God will bless you for that! Your family is in my prayers. All my love.
ReplyDeleteHi, I read your story in the church news and came to visit your blog. Sorry to hear about your 3 angels, but I'm happy the other 3 are doing so well. I had 32 week twins on April 30th, they were in the nicu for 9 and 10 weeks. I understand some of what you are feeling. I hope your 3 girls continue to progress and get better. I remember days I just didn't think I could do it anymore but some how made it through and now have my sweet babies at home with me. Good luck and thanks for keeping us posted! Take lots of pics, they grow fast!
ReplyDeleteMy son has a VP shunt for grade 4 IVH. So far, there have been absolutley no problems resulting from that procedure. He is visually impaired, but that has NOTHING to do with his bleeds. Thank you for sharing your journey with us all, you are incredibly strong. The NICU is a stressful but amazing place all at the same time. God bless your family.
ReplyDeleteSo glad to hear your good news! I am praying for your family. Thank you for sharing your amazing faith. I stop by your blog a lot, your words lift me!!!! You and have a beautiful heart. May God continue to keep you strong!
ReplyDeleteThank you for taking the time to post an update on your three beautiful girls.
ReplyDeleteThis comes with our prayers for good health to you all from Australia.
You guys are in my prayers for completely healed little girls.
ReplyDeleteThanks for the update! I hope the ultrasounds go well tomorrow!
ReplyDeleteSo glad to hear the girls are getting stronger. I continue to keep you in my thoughts and prayers each day. Thanks for keeping us updated. Sherri
ReplyDeleteI am so glad they are doing better and getting stronger with each day.
ReplyDeleteI just wanted to let you know what my philosophy was while our Abbi was in the NICU for 118 days. The Dr's have their opinions based on their past experiences, but God wrote these precious babies books before we ever knew about them. God and your girls will show you what they will do, don't let the Dr's tell you what they won't. Abbi had a grade 4 and a grade 2 bleed. We were told she would have cerebral palsy and mental retardation. She's now 2 1/2 yrs old and doing great. She tested at a 3 yr old for comprehnsion when she was 25 mos adjusted. She's now walking on her own also. You can read about her NICU journey at http://www.caringbridge.org/visit/abbigalehays/journal
ReplyDeleteMy prayer today and for the rest of your journey is for God to heal Rachel, Ashlyn & Haley. He knows what needs healing in each one of them. Also may He give each one of the NICU staff the knowledge & wisdom. And may He bless the family with patience, wisdom & peace. Thank you Father for holding these precious little ones in your arms while their loving earthly family cannot. Amen
I have to add my agreement to GG2Abbi. My son (29 weeker who will be 22 yo in January) had bleeds - I want to say 3 but it's been too long to be certain. 22 years ago a 29 weeker is, with technological advances, probably approximate to a 24 weeker now. He was 3 lb. lost 10 oz in 4 days, had bleeds, was in nicu for about 100 days - and is now a 6'2" perfectly healthy 21 year old man. Miracles happen every day in the NICU.
ReplyDeleteThank you for the updates! You and your little girls are on my mind and in my prayers constantly. I've known so many micropreemies in my wards whose parents weren't always given a lot of hope for their future, and they all turned out great and are beautiful, healthy, smart teenage girls now!
ReplyDeleteThanks for the update! you are so gracious to take your time to share this with all of us worried mom's & gramma's. can you believe 3 weeks old! i am so grateful for these little miracles. the only better thing would be to be there.
ReplyDeletelove Erma
Keep up with the positive attitude. That will be one way to get through these hard times.
ReplyDeleteYou might want to read the article in The New York Times on the effect premies have on Moms and Dads.
HEALTH August 25, 2009
For Parents on NICU, Trauma May Last
By LAURIE TARKAN
Even when a preemie survives, parents may fall prey to mental anguish.
You may want to read it to prepare yourself for what lies ahead.
Virginia (still acting like a librarian)
Have you considered using your story in the future as some kind of advocacy tool to be used to stop doctors from impregnating women with high order multiples?
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteDanielle, doctors do NOT intentionally impregnate women with high order multiples. Unfortunately, it is a risk that comes with the need for fertility help. Speaking from my experience, my doctor did everything in his power to limit the number of follicles with each cycle, but there is only so much control they wield with an IUI or OI cycle. If a cycle produces too many follicles the doctor typically cancels the cycle and you start all over. However, there are instances where it looks as though you only have one or two follicles and then you end up with many more. Again, that is sometimes how it works. The other alternative is IVF, which allows for much more control, but is significantly more expensive and not typically chosen by couples who can conceive using one of the first two methods. Until you are in a position that you can not have children on your own you can not imagine the lengths you will go to bring a healthy child, or yes sometimes children into this world.
ReplyDeleteAmanda,
When I was hope on maternity leave I more or less lived at the hospital. I was fortunate enough to live relatively close so it wasn't an issue getting back and forth. I felt better about knowing Rhys's condition when I was up there, and was also able to participate more in his daily care. One of his NICU doctors told us after he was discharged that he didn't believe Rhys would have survived, nor done so well, had we not been up there every day. Just wondering if you'd thought of it... like I said, it helped me feel useful while my husband was at work
Amanda and Thomas,
ReplyDeleteI am a proud mom of a 26 weeker. Parker just celebrated his first birthday on Sunday. Don't give up hope. Your strength and faith are a true inspiration to me. I agree with Candice, be a big part in the care of the girls. Parker had a few obsticles early on that we didn't think he would pull through and I believe it was because my husband and I were there constantly talking to and loving him that he made it. It was to the point that I was called the "Ideal NICU Mom" because during rounds, I could give his daily update. I could tell you EVERYTHING going on with him. Don't hesitate to ask questions over and over if you need to...I did! He is now like I said 1 year old and doing AMAZING! 20lbs of pure atitude! Please feel free to read his blog www.parkertoday.wordpress.com
You and the girls are in my prayers. Keep strong and remember to lean on each other.
Mere
You're all in my prayers! Day by day, keep up the positivity.
ReplyDeleteDara