Here we go! The echocardiogram came back today to clarify one thing, Kayleigh will need surgery. The (VSD), hole in her heart will need to be closed because medication will not be able to get the job done. So as of right now, they have increased her feeds to deliver more nutrients (Carbs, Fats and Proteins) without increasing level of food they give her. So basically, she is going to have a high calorie diet packed in a small dose.
The Lasix will be used to extract the fluid out of her lungs until she is big enough to add the pulmonary band which will take over that job. Our goal is to get to 1000 grams (2lbs 3.3oz) so the Doctors can do surgey to add the pulmonary band. Once that goal is met, our next goal is to make it to 2000 grams (4lbs 6.5oz) so they can open the same incision to repair the hold (VSD) in her heart. A nurse said that we should expect an increase of 25 grams a day. If she hits that mark everyday, our first surgery will be around 18 days from now.
To help Kayleigh rest and grow as quickly as possible, they switched her over to the ventilator this morning. She was so peaceful today that we just wished they would have left her on this the whole time. The problem is, the vent is more likely to cause long term damage to the brain and respiratory system, maybe others. So, the Doctors felt it would be in the best interest of Kayleigh to take that chance, rather than not grow quick enough and die. I completely agree with that because I have heard of many preemies being on the vent for a long time and nothing major happen. We will just put that in God's hands and let him take charge.
So right now, we are playing the waiting game and praying for growth. The stars have to align for everything to work out just perfect, but God has performed many miracles and we know he will continue to watch over Kayleigh through this new battle. Kayleigh justs wants to make things interesting, doesn't she??? She has already racked up three years of time outs for all the other crap she has pulled.
Please keep us in your prayers as growth is what we need more than anything. Man, I feel like we have been fighting this battle with her size from the beginning. We hoped she would make it to a certain size to be viable when she was inside Mommy and now that she is out, she has to be a certain size to stay alive. Aimee and I were slaves to the ultrasound measurements for 12 weeks and now we are slaves to the incubator scale. I am sure 8:00 everynight will be the highlight of our day because that is when they will weigh her. Watch, my luck she is going to be a linebacker on the high school football team. ha-ha.
Thank you all for your prayers, gifts and love.
The Freemans
8 comments:
Im definatly praying she puts on weight, I hope she exceeds her goals! Keep on fighting Kayleigh, we're praying for you! xoxoxox
Babyksmom05@yahoo.com
Oh Kayleigh, what a little stinker you are. You just want to be spoiled rotten huh? j/k guys, she is super sweet and a little fighter. As for the ventilator, Anthony was on it for 17 days + 1 day for his PDA surgery. And he has NO brain injuries, everyone comments how smart he is and quick to notice everything around him, and yes his lungs did get a little scarred from the vent, and he was home on oxygen for awhile, but now his lungs sound great and he should have no issues. I know lots of preemies that were on the vent for much longer and they are doing great.
I know I can't say anything to take your fear away, but I know seeing people that have gone through this and have a happy, healthy child to show for it does ease some of the worry. But when Anthony was in the NICU sometimes I swear it felt like he was going to be there forever. 91 days is a long time to wait. But he's well worth it. =-)
this lady's video of her preemie really helped me while Anthony was in the NICU. I swear I must of watched it 100 times. I hope it brings you comfort like it did me.
http://youtube.com/watch?v=DnIyJq7XnC8
I'm sorry to hear that she has to have surgery. But, she's a fighter and I know that you have a bunch of people praying for you all.
The way the doctors explained it to me when David was little was when they burn calories working so hard to breathe, calories that are vital to grow and put on fat. So he was on a ventilator for four months, and oxygen until just last fall. And he was 36 pounds when he turned two lol... so the doctors must know something.
Anyways... the vent is such a tricky thing though because, like you said, it can cause some long term damages (David had retinopathy of prematurity and had to have laser eye surgery while still in the NICU, as well as chronic lung disease from being on the vent for so long. All that really means is he's more likely to have asthma and respiratory illnesses like RSV etc) but the ventilator saved my baby's life.
You'll find that the whole NICU experience is a balancing act, really. Everything from the vent, the amount of oxygen they give him - not enough to cause damage but enough to keep them alive, the medicines the give, when she starts to eat, they'll want to give her enough practice that she knows how to do it but not so much that she burns more calories than she consumes by eating, etc. It's very stressful. But, the both of you are handling all of this with so much grace.
If you ever have any questions about anything (David didn't have the exact same problems as Kayleigh's experiencing, but I do know what it's like to have a micro preemie) or just want to vent or anything, please feel free to email me sxymma@gmail.com
BTW I love the picture of the ring around little Kayleigh's arm.
Kayleigh You are in my thoughts and prayers!! Grow sweetie grow!! God Bless You Kayleigh!!!
Adam and Aimee I just wanted to tell you and I know that many people have!! The Nicu is a rollercoaster ride and it feels like you are in prison! My preemie stayed for 31 days and it seemed like a lifetime. My life(my families life) completly stoped durring the month of september of 06. I lived an hour and a half away and so I moved into a Ronald Mcdonald house to be closer to my baby!!The memorie will stay with you forever but when you see what your little miracle went through you will cherish her forever!! She will teach you things that you would have never learned from a term baby! Its amazing!! Kayleigh is amazing!! Stay strong and stay close with God!! He has already brought beautiful Kayleigh to this world!! I don't know if you have read but on BBC there is a thread where it gives fast faqs on preemies. If you go to the guilt and you clik on the first on there is an amazing poem called "How Preemies moms are chosen!!" God Bless!!
Erica
Mommy to 2 boys
1 who was a 31 weeker!
Uncle John and I are keeping an eye to the blog and praying for you all. Praise God he has created this little miracle and when she is 13 (years old) and you think parent thoughts of how to curb her fighting instinct...you will just have to think back and be so grateful she is the fighter she is.Love; Uncle John and Judi
Charlie was on the vent a few times, for surgery and after twice, as well as one 10 day stint when he was battling an infection.
But he still came home with no ROP, oxygen or any BPD. I think it's the high-frequency vents that do the most damage, but I am not sure. It also has to do with how high a level of oxygen she is using that determines how much damage is done.
Charlie had the HARDEST time gaining weight. The daily weigh-in was my hardest part of the day. He dropped from 2lbs, 8oz to just 2 and didn't get to 3 for almost 8 weeks! But he had nutrition issues, and a bowel perforation that didn't let him absorb any nutrients.
Just remember, in the NICU it is two steps forward, one step back (sometimes more). That's the way it goes. It doesn't make it feel easier, but it's normal.
I will pray for her to gain weight!
I pray that Kayleigh gains weight very quickly. And that everything else falls in line up until the time comes to do surgery. Lots of little preemies have heart surgery while they are small. VSD and PDA's are usually fairly quick not so complicated procedures. Carly was on the high frequency vent for nearly a month and then the conventional vent for another month but was also on ALOT of oxygen and it took nearly 1.5 months before any damage was done to her lungs. From what they are hoping for she should be off the vent well before then and she's probably not requiring very much O2 (Carly was on 55-100% for the longest time!) Kayleigh is a strong fighter. God bless you all.
In Christ,
Rachel
i hope this is some comfort to you that kayleigh is going through very typical preemie stuff. the doctors are very familiar with how to treat these conditions. thank god there are medications and surgery that can help her.
my son had a pda, was put back on the vent for a week for surgery and came out of it like a champ! he was off the vent the day after surgery and eating from a bottle two days after that! he also had lasiks on and off (even for a week at home). he also gained weight just on the IV stuff during his week waiting for surgery. although he did miss his food in his tummy.
good luck! kayleigh is doing fantastic. she will exceed your expectations. my son left the hospital at 6.7lbs! nobody expected that gain.
btw he only has slight asthma from the vent. no ROP. today at 17lbs he weighs 29lbs!
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