Kayleigh started her day off with many desats back to back which caused the nurse to call in some respiratory specialists to see if they could figure out what may be causing her to have so much trouble. The only suggestion they had was to change her position to see if they would help Kayleigh. It did for a little bit, but later in the afternoon she was back at it again.
The crazy thing that is shocking the Doctors is that Kayleigh is not having the normal type of desat where her oxygen slowly drops from 95-70-50, and then the heart rate drops shortly beind that. Kayleigh is dropping quickly from 95-50-10. At times her oxygen is dropping in to the single digits within a matter of seconds and then the heart starts to drop within 30 seconds after that. Sometimes the heart doesn't even drop at all, so that is what is concerning the Doctors. She is quickly bouncing back which is good, but sometimes she doesn't and needs help.
They did some tests today which possibly confirms that these severe desats are caused by the VSD (hole between chambers) in Kayleigh's heart. The hole is a moderate size, which moderate can mean large for Kayleigh because her heart is so small to begin with. They are doing an Echocardiogram tomorrow to get some more answers, but they noticed that the VSD is causing the lungs to take on fluid due to the heart overworking itself. The fluid is then causing Kayleigh to have trouble breathing and the VSD is causing an issue in transfering a sufficient amount of oxygen to the body. Basically, they both don't go hand in hand and is causing the severe desats.
The good news is that the hole will not get any bigger and can close on its own. Also good news is that they can do heart surgery to close the hole if the medicine does not work. The surgery will both limit the fluid in the lungs and help the heart distribute more oxygen to the body. The bad news that if she needs the surgery to close it, she is no where near the size to have the surgery performed right now. They are needing her to be atleast 4.5 lbs. That is over three times the size she is now (She weighed in at 550 which is 1 pound, 3.4 ounces)
The new medicine they started today is called Lasix. It is a diuretic that will help extract the fluid from her lungs. The other medicine that they will start Monday is called Digoxin and that is to help the heart boost its performance so she can get more oxygenated blood flow through the body. If the medicine does not work like they want it to, they may have to do surgery to insert a pulmonary band to stop the fluid from going in to the lungs.
So right now we are in a game of waiting. I am anxious to hear what the Echocargiogram is going to tell us tomorrow. I will be sure to let you all know something as soon as I find out and can post.
***For those who know about this or have been through this situation, please post and let us know your experience.
***For all the others, please post (in the comment section below) a prayer for Kayleigh that this issue will be quickly resolved by the hands of God and that Kayleigh will quickly grow out of this severe desaturation phase.
Thank you everyone and God Bless!!!
The Freemans
15 comments:
Aimee and Adam,
I am praying for all of you daily and even in the middle of the night, I pray for Kayleigh and then for Liana and Adleigh. I was a respiratory therapist a long time ago and I remember what it was like to see these tiny infants and their parents. I just remember everyone saying to be positive around the isolettes, talk to the babies, sing to them and let them know how much you love them. God has a plan for little Kayleigh. I am praying that He will perform a miracle in her tiny heart so that she won't need the surgery and that she will continue to gain weight and will soon be able to join the rest of the family. Try to stay strong and feel God's arms around you as you know that so many are praying for you.
I've never been through that in particular, but I can remember being as scared as you must be right now. I'm curious as to why they haven't put her back on the ventilator when she's desatting so quickly like that?
I'm hoping this is just a minor setback. Keep us posted.
Sam, they aren't putting her on the vent because she is bouncing back on her own with he desats (most of the time) and in their experience, the vent is at higher risk of causing developmental problems. They figured no matter which of the two she was on (CPAP or vent) she is going to desat the same because of the fluid in her lungs and the hole in her heart. I asked that same question too :) Adam
Amiee and Adam, it is a rough patch, and it will pass by. God is great he will help you through all the rough times.
We have been praying for baby Kayleigh since the BBC, and I know just what a little fighter she is.
Although our son did not have the VSD issues, we were told in the NICU that he might need surgery for "reversed intestines". Thank GOD we never had to face that, but I know a bit of the emotional roller coster of the NICU, and it seems never ending! A helpful thing that a social worker told me, was to picture the baby as a young child running/playing with her siblings,etc. Make the vision strong, and keep the positive vibes going when you visit.
We pray for Kayleigh every day, and my 4 year old stopped middle of the day in a blueberry patch yesterday, to say a prayer for our "computer baby", so that someday she can come with her Mommy and pick blueberries...that day WILL come!
I also pray that you and your family find daily strength, peace, and keep up your positive attitudes. Leslie
Hey guys. I'm so sorry you ae having to go through this. I know how tough it is to see your daughter struggle with this. My daughter had a rough time early on with desats that were unknown. She had plumanary(sp?) hypertension which caused fluid build up and caused lots of desats. They used lasix on Carly as well and from what I can remember it did help. Carly's problems came from her unrepairable heart defect. But I know VSD is fixable. The hard part is playing the waiting game in waiting for her to grow. I know it tears you apart to watch her levels drop so often. One day Carly had 7 severe desats in less than an hour with bradys and had to be bagged time and time again. BUT....she always pulled through. She would have a couple of bad days sometimes even a week at a time but she would bounce right back and be her perky self. Have you tried letting her lay on her tummy? Carly always breathed much better on her tummy when she was having desats. Have the checked her hemiglobin lately? Babies that small sometimes get anemic and low blood makes it harder to move the oxygen throughout the body. Just a though.
God, I come to you laying Kayleigh at your feet. I pray Father that you pick her up and place your hands on this child and heal her from all that's going on. I pray that you releive the fluid on her lungs that's causing her a problem. I pray that that you heal this hole in her heart. Hold her in your hands and keep her safe and free from pain. Comfort her and give her the peace of knowing you are there with her through this time. Father I pray that you give her parents the strength and comfort to pull through these tough times. Give them the faith in your healing powers. Father I pray that you lay your hands on the nurses, doctors and any other part of the medical team that will be working with Kayleigh that you give them the knowledge to know what's going on and the knowledge in how to fix it. We know that you are in control and that we have to step back and let you do what you have planned and we are trusting in you right now. We love you Lord and thank you for what you've done, are doing and going to do. For it's in Christ name, Amen.
In Christ,
Rachel
I'm a long time reader, first time poster.
Good luck little Kayleigh!
we've been thinging and praying for you from the start. You're a strong little girl!
We love you!
-Tiffany
Anthony had 2 VSD's they were small but right next to each other so they said it was similar to 1 moderate size VSD. His PDA also wouldn't close after 3 founds of meds. He was rushed to UCLA medical center because our hospital didn't perform the surgery and had his surgery the next day. He weighed 2lbs 8 oz when he had it done. So tiny! I was so scared of him having heart surgery at that size! But he made it through. He has a scar on his left shoulder and a scar on his side from the chest tube. I do have to say after the surgery that is when he really started gaining weight. And gaining weight made him healthier all around. He still had scarring on his lungs from being on the ventilator. By the time Anthony came home his VSD's were much much smaller and when we went to the heart dr he said they would have no problem closing on their own. And now his heart murmur is gone (VSD).
Anthony was put on lasixs in the beginning as well because he also started to retain fluid. I think he was on them for quiet awhile, until after his surgery.
The first year is soooo hard. And the first month is the hardest. I swear there were times I thought I was going to go crazy. Not sure if you have Myspace, but I did write more about Anthony in the NICU in my journal on there. myspace.com/ninjakm is my address. Its private so you would have to have an account and add me as a friend. I just thought it might help to read some of it.
Kim
First of all, Trey had heart surgery to close his PDA and was around 3 lbs and did fantastic...as sick as he was he woke up from the surgery perky, so don't stress over that just yet. When people talk about heart surgery it sounds so scary, but some do it right at bedside (in a sterile environment of course) and it only took about 20 minutes. Have they mentioned trying "indocen" to close it?
We are constantly talking about and praying for Kayleigh, we bless her tiny heart every day and pray you will have your baby home sooner than later. We pray you'll have a fairly smooth NICU ride and that you will come out of this stronger and not ridden with anxiety.
And we pray that when she comes home you will one day invite us to meet baby Kaileigh!
It's not meant to be easy, but think of it this way, I figure these little guys will be PERFECT teenagers because they owe us for the early stresses they put us through!!!!!
God bless your entire family and every wee baby in the NICU with Kayleigh and all the NICU babies and parents going through similar situations.
Most of all, you guys have kept your wonderful sense of humor, that says A LOT about you two. You have to laugh sometimes to stay balanced...
We will continue praying and sending our angel your way, Love~Heather and Dave
I will definatly be praying for Kayleigh to get through this. I hope that the meds help her. I know you and Aimee must be terrified right now and I wish I could give you both a hug.
Babyksmom05@yahoo.com
Your family is in our prayers and our hearts.
Your family and your precious daughter are in my prayers. I am a mom of a premie who is now 16 months old. He is healthy and developing more or less normally. I am pregnant again and I began feeling contractions this time around 13 weeks. Your story is an encouragement to me and I am praying that Kaleigh will grow and be healthy, that her doctors will have wisdom and great skill.
I pray that the Lord will take care of your little angel and make her little body strong. Also help her parents and help them to be strong mentally and physically through this time. I am sure Kayleigh has an angel right beside her at all times watching over her and holding her hand. My prayers are with your family.
God Bless You,
Monica
she is so cute!!!
Aimee and Adam -
Zachary has an ASD, he had moderate pulmonary stenosis (he has had valvoplasty and now it is mild pulmonary stenosis) and even having the PDA ligation, his PDA remains open a bit. I had PROM when I was pregnant and he was in me five weeks without fluid so he has issues with his lungs. With all that, he is still doing well and is our Gift from God...please remember to have faith and patience.
Your daughter is so beautiful and such a fighter it brings tears to my eyes. The fighters are so strong and can feel the love from their mommies and daddies.
Stephen and I are here if you need a place to talk and ask...
Kim & Stephen Baldwin
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