One step forward and two steps back

Well, today on the way to the hospital I got a phone call from the cardiologist. He called to let us know that Grace's oxygen saturation levels had been jumping up and down all morning and that the pressure in the right ventricle has been very high (both not good news). He was letting us know that he was going to give her medication to help relax the heart, so that hopefully the right ventricle will function better. The PDA had still not closed, an in fact had gotten larger now due to the high pressure in the right ventricle. Grace will in fact not be coming home this weekend, and the surgery for a shunt in the heart is now back on the table after her reaction today:( She was doing so well, we really did not expect this turn.

When we got to the hospital, Grace was back on oxygen with a nasal canula. She had been turning blue in the AM due to her low levels of oxygen in her blood. We were able to feed Grace, and she is doing great with that, but her poor little heart just isn't doing what she needs it to. Her oxygen saturation levels were all over the place while we were there and the nurse called the Dr. to see how high she can turn the oxygen levels up to, which makes me wonder if she may need to be intibated again if she continues to be all over the place with her oxygen. I did not have the heart to ask this question today, because I did not want to be told that this is a possibility. If she needs surgery, I know everything will be back again, but I also realize that if that is what she needs then that is what we have to do.

It was so hard leaving her today. Her little eyes just make me want to stay with her all day. All in all I am not doing so well with her step back todays. I really just want her to be ok and to take her home. I hate having to leave her everyday, although I know Gavin needs us too. I am hoping that the hospital does not call tonight....no calls always mean that she is ok, so phone calls are never good news.

Wed. April 29th

We have no oxygen, no tubes, no meds., and are eating by mouth!! What a huge change in just one week. The PDA is not closed yet, but they feel it is closed enough to know that the right ventricle is working enough. This information is from the nurse. The cardiologist appears to be an elusive beast who only rounds late in the afternoon at no set time---we never get to actually witness these rounds--we just hear about them from the nurses. I am actually going to call the cardiologist tomorrow in hopes to hear some optomistic information straight from their mouths versus the nurses. I love the nurses in the NICU, they really know what is going on.

There is a rumor that Grace might be coming home as early as this weekend. This is both exciting and scarey at the same time. I want nothing but to be able to cuddle her all day long....but I know she still has Ebstein's anomoly and I would like to hear from the cardiologist what the plan is for that defect. I know before she was born they said that the Ebstein's may not be corrected until later in life...or if it is really mild....maybe never. This is what I want to know.

Well everyday is better and better news!! Thank you all for your prayers and your support. You all have been so helpful in keeping me together through out this pregnancy and with all that Grace has had to endure. All of your prayers have truely made a difference.

Tuesday--April 28th

Today we were able to hold Grace for the first time since she was born. Keith was able to hold her briefly in the delivery room and since I was in the other room pumping when we first arrived he was able to hold her today even before me:) I guess I'll forgive him for that one, after all he is her father:P

I did end up hogging her for the rest of the time we were at the hospital. I could have stayed there all day holding her if Icould have.

Grace has been taken off of all the medications. They started feeding her today. She is given only 10cc at a time and the nurse says it seems to be a tease and she gets really mad. This is good because it means she wants to eat. Hopefully they will up the amount tomorrow during rounds. She continues to be stable with taking away all of the medications, and as far as I know I believe she is off of the oxygen completely as well.

When I called a little while ago the PDA was still slightly open, so we still do not know for sure the surgery was effective. Hopefully it will be closed by tomorrow. We will have to continue to wait and see.

She is doing so well. It has only been a short time in her little life, but she has proven to be one of the stongest people I know. Home might be in the near future for little Grace, but I will continue to take it day by day.

April 27th-Monday

Yeah!! Baby Grace is breathing on her own. Her breathing tube was removed today while we were visiting!! She is still receiving oxygen through a nasal canula, but now we can really see her beautiful face. I still have not held her, we really just wanted her to be stable without her tube. Grace also blessed us with opening up her eyes while we were visiting as well!! Today has been a very busy day for this little girl.

We are still waiting for the PDA to close up to see if her surgery was succesful. As of 1 hour ago the update was that the PDA was still open so, we still have to wait.

All in all, it has been a great day for Grace!! I am so excitied to see her make such great progress:)

Sunday April 26th

Today I was discharged from the hospital. I was able to see Grace at about 5:00 AM and two other times before I left today. She was a little more alert than she has been, moving her arms on her own and crying. Although I could not hear her cry due to the feeding tube, it was beautiful to witness the faces of her cry. I was able to hear her cry right after she was born, but I have not heard her since.

Today she was taken off of all the medication used to sedate her. She has still been very sleepy and grogy through the day. They also decreased the amount of breaths that the breathing machine was giving her. She is still using a tube to breath and still very sleepy, but hopefully tomorrow we might be able to talk about taking the tube out.

We are still uncertain if her first surgery was a sucess, so we are still waiting to find out. She is still stable...so, we are still doing well.

I myself am so sleepy today. Goodnight all, hopefully more good news tomorrow.

Sat. April 25th

I was able to spend about an hour with Grace this morning. She is doing well. She has ben very heavily sedated so she is not very responsive. I have not even seen her eyes yet. The nurse said they were going to decrease the sedation today, and that she will be more responsive by later this evening. She even said I might get to see her eyes tonight!! She needed a blood transfusion today due to all the blood tests she has to endure as well as her surgery from yesterday. The neonatologist said she is looking good for everything she is going through. She had an ultrasound of her whole body today, just to assure that the rest of her thousands of parts are functioning appropriatley. So I am sure we will be updated with any of that information sometime today or tomorrow.

The prostaglanden medication will be stopped sometime this afternoon. This will let us know if her first surgery was helpful to her heart or not and whether she will need another surgery shortly.

I just want to pick her up and hold her and kiss her. She is so sweat, it is so hard just to see her lying in the bed not able to do anything. Even just to hear her cry again would be a relief.

I love you all and thank you all for your support and loving words.

Alexis:)

April 24--1 day old and already one surgery

Today was baby Grace's first surgery. She had a catheter surgery to open up her pulmonary vavle. From the surgeon's standpoint the surgery was a success, but now we have to wait to see if this was enough for the blood to flow appropriatley to sustain enough blood to the lungs. The concern is still that the right ventricle of the heart is not big enough and functioning appropriatley enough to sustain the pressure needed for the proper amount of blood flow. So, tomorrow she will be taken off the medication that is keeping other parts of the heart working to compensate for this issue and see how she does. I hope it works:)

She is still stable, but still attached to many tubes and on many different medications. She is a little fighter. She is so beautiful:)

Ok, well Grace was born at 9:49 this morning. She is 6lb 14oz and 19 inches long. She is in the NICU and has been intibated to help her breath and is hooked up to numerous wires at this time. I was able to see her shortly, but due to the c-section I am stuck in bed until 10PM. The most unfortunate thing is that no one is able to pick her up and hold her at this time.

So far she has sen the cardiologist, but we are still waiting to see the cardiologist ourselves. So, we wait.

Tomorrow

So, the bag is finally packed. The c-section is at 9:00 AM, so, ready or not here we go.

April 21st

Still have not packed my bag....but it is 2-days and counting.

April 20th

3-days and counting....

Baby Grace

I have started this blog for our friends and family to know the emotional and medical updates for the start of our lives with Baby Grace.
Baby Grace was diagnosed with Ebstein's anomoly and pulmonary atretia when I was 27 weeks pregnant. It has been quite a roller coaster ride since that date with multiple doctor appointments and just waiting for the unknown.
We are now at the 4-day countdown to the day she arrives. My c-section is scheduled for April 23rd at about 8:30 AM.