I figured this would be the easiest. As most of you know I lost my daugher Olivia Grace at the age of 3 months back in January due to her being born with a Hyproplastic left heart. I am currently pregnant now and have about 4 weeks left. About 2 months ago we found out that this baby has a heart problem as well. It is not as server as Olivia's was, but it still has to deal with the left side. They do not know what causes it unfortunatly. I see 4 specialist and my OB so I have... a crazy busy schedule and all my appoitments are atleast an hour away. We were told that we need to deliver at a childrens hospital that does surgerys on the heart incase this baby needs one right away. I chose a hospital that is an hour and half from home so I will be away from my family again. Unlike Olivia we are preparing ourself because we know about the heart condition. The never told us Olivia had anything wrong with her until after she was born and then we were seperated for a couple of days, she was 3 hours away and my husband went and stayed with her. I say this baby because the gender is a secret, but anyways. This baby has a few things one which is the major one it is called the Aortic Stenosis. It is where the Aortic valve has narrowings in it causing the blood flow to be less. The left side of the heart is smaller than the right, they say is is half the size as the right. There is only one Papillary muscle instead of two. As of right now I do not know if the baby will need surgery right away, we have to wait till the baby is born and they do an echo on it and see how the heart is.
We are having a benefit for Olivia Grace. Please visit www.benefitforolivia.com for more information
I know that I have not posted on this page in a very long time. I was so excited to have Olivia home for the Holidays I didn't even worry about posting on here. I wanted to spend every minute with her.
Olivia was doing good. We had a nurse that came out to the house 3 times a week to check her weight and other things as well. We went to doctors appts every week and each time they kept saying how Olivia looked great and was doing so well.
December 30th Olivia had a doc appt a...t her Cardiologist in Evansville. He walked in the room and looked at her and said there is something wrong. She was to blue and was breathing to hard. He then said that we needed to do an Echo, EKG and and xray. So we did all of them. He took a look at them and said he thinks that her Arotic valve was getting to small and she needed to go to Riley right away. We said ok you tell us when and we will be there. He then called Riley and told them that she needs to be seen. They then told us that the fallowing week they would let us know when to come in. They called us on tuesday Jan 3 to confirm that
we needed to be at Riley at 9:30am Jan 4th. We said ok we will see you tommarow.
We left Wensday morning Jan 4th to go to Riley for Olivias appt. It was a typical morning and everything was going good. We were about 40 miles away from Riley when Olivia started to cry. We pullee over at a turck stop. Olivia started to cry alot and started to turn blue. An ambulance had pulled in the parking lot so I ran over to them and asked them if they could help my baby shes crying and turning blue. They said yes, but couldnt take her anywhere because they already had a patient on board. They took her and was monitoring her as I called 911 to get another ambulance there. Another one came and also did a helicoptor. They put Olivia in the ambulance that came for her. They got her stable and was going to start driving to the nearest hospital which was Columbus Hospital. The ambulance was dead bc someone shut it off. They tried to jump start in instead of putting Olivia on the helicoptor. Then they finally put her on the helicoptor and flew off. My husband and I jumped in our car and went the to hospital where Olivia was at. It was only 4 miles away I wish we would have known that before we had pulled over.
They tried for an hour to pump Olivias heart and to make her breath. It wasnt working and they told us they wouldnt do it any longer.
Olivia passed away that morning Jan 4, 2012. A day I will never forget. I miss my babygirl so much and would do anything to have her back. Her life was not supose to end like this.
Mommy loves you Olivia Grace♥♥
Olivia has been doing super good. This morning when the docs were making their rounds they told us that we get to go home on Tuesday the 8th We are working on her feeding and she wil be going home on the NG tube but we will get to bottle feed and work our way up to not having the NG in. Working on training so we are allowed to go home. When at home we will have to have a home nurse come for 40 hours a week! I am not sure what they plan on doing in those 40 hours bc there is really nothing for them to do. We will have lots of doctor visits down here at Riley so we will be spending lots of time in the car Tuesday can't come fast enough! I am so so happy!!
I Love you Olivia Grace, mommy is SO proud of you!!♥
Olivia is doing good today. We got word this morning that they are transfering us to the heart center so we are doing paperwork to get moved up there. Olivia got her nasal cannula taken off today so she is breathing on her own and she is doing great! Got the stents taken out of her chest today. They were the wires for the pacemaker incase she needed that. Speach is coming at noon today so we can work on her bottle feeding.
I am so proud of my babygirl! She is doing so great and we will be home soon♥
I Love you Olivia Grace!!♥
Olivia is doing so good. Thank you everyone for all your prayers and support.
Her numbers are looking really good and they are where they docs want them to be. They have been staying around the same so they decied to take her artline out today. She only has her pic line in and thats the only line left! She is on .05 of oxygen so we are working on getting her off of that completly. We tried to bottle feed on Thursday and Friday, it went ok. They say it takes a while since the...y havnt ate before and always got their food through a tube so we are working on that as well. We are going to the heart center either tommarow or tuesday. The heart center is the last place we will be before we are able to go home. Not sure when we are going to get home, but we are another step closer.
I Love you Olivia Grace! You are doing so good mommy is so proud of you♥
Olivia was taken off the ventalator two days ago on October 21. She was doing good at first and then towards night time her numbers dropped where they did not want them to be. The nurses and doctors rushed in her room to put her back on the vent. Oliva then brought her numbers back up so they just kept her on the c pap and never put her back on the vent. She has been staying the same since she been off the vent. Her oxygen level in her blood is higher than what they want it t...o be, but she looks good and is tolerating it so they are not as concerned. Olivia has a cathider exam scheduled for wensday Oct 26th to see what they want to do as her next step. There are many possible things that Olivia can get. She can get nothing done or she can have another major surgery and get a new valve put in. We will wait and see what happend on wensday.
I love you Olivia Grace♥
Olivia had and Echo done yesterday to see if she had to have her other heart valve worked on. Last week they measured 22 for the presure of the blood flow. Yesterdays Echo her number was a 14. The average kids heart that has nothing wrong their number is 8 so she is pritty close. They said that her number looks good so they don't have to do anything if she does good while they whine her off the ventalator. She started to get whined off the ventalator today and so far she is d...oing good. Her stiches look good and they are healing. They are giving her 17oz of breastmilk with one scoop of formula every 3 hours. She got two more tubes taken out of her chest yesterday. Her gases that they take every 6 hours have been in the range they want them to be in as well as her heart rate and her blood pressure. All around Olivia is doing good and I hope to be home soon with her♥ I miss my home, cooking and even cleaning, oh and my puppy Hemi!
I love you Olivia Grace, you are my miracle baby♥
Olivia has to have another surgery next week some time. We do not know when yet the doctors are still talking. Her last surgery she had one of her valves operated on, the one that made the blood flow to her body. The surgery next week she has to get her valve that makes the blood flow to her lungs made bigger. My poor babygirl is so helpless and has done nothing to deserve all of this
I Love you Olivia with all my heart!!♥