August already!!!

Well, the last cardiology appointment was fine....all they did was listen to her heart through a stethoscope and said she sounded good. Since then......we ended up in the ER last week because Grace paled out 2x and didn't eat well for a day...so the cardiologist's nurse felt those two simple things warrented a check. After 3 hours ...with an echo of her heart, the emergency room felt she was OK:) Whew....now tomorrow she has another cardiology appointment. She will have another echo and hopefully we will hear some kind of news.

On the home front...I have started work again full time so I have been super busy!!! It is hard getting back into the swing of things. I am also sorry I have neglected this blog...I will try to better...even if it is just a "we are doing great" little note.

We have an appointment

We have an appointment for the Cardiologist on thursday now. It sounds as though they are only going to do an EKG at this time versus an echo. I will ask them more about it on thursday. The good news is we will probably be able to go to the picnic on Saterday. As long as her appointment goes well, I can get her shots on Friday and then we can start to venture outside of the house!! We will still have to be cautious, but she can go out as long as no one is ill around her. This is exciting news!!

cardiologist??

So I have been trying to get a cardiologist appointment but no one calls me back. I really know we need to follow up, but I have called 3x already this week and no one calls back to schedule the appointment. I was really hoping that Grace would be seen so I can get her shots and go to Keith's family picnic with her, but if she does not get her shots, then she won't be able to go. Kinda frustrating. I guess the good thing is that they are obviously not as worried about her as they were before this last surgery...but still.

Grace had a very sleepy day yesterday, but today she is back to her wakeful self. She decided wakey time was at 5 this morning and has pretty much been awake since. She will also be getting a bath today as well!! Baths are not really her favorite thing, but she needs to get cleaned, so sometimes she just has to do things she does not want. I guess that is training for life:)

going well...

Grace is still doing very well. She has been getting bigger by the second. I have to schedule a cardiology appointment for next week and then maybe we will know how well she is doing. Her heart has not been looked at since her surgery, so I will be very excited to see the cardiologist. Other than that we are still doing great:)

The home front....

Grace has been doing great since her surgery. She seems some what back to her normal self. She is eating anywhere from 3-5 ounces at a time; however soemtimes she is just grumpy. That is a baby though so all in all that is pretty healthy. I feel so lucky that she has done so well. Next week we have a NICU and surgical follow up appointment. I am confident that they will be pleased with her progress. Grace is just so beautiful and such a good fighter. I myself have been busy with work and just life in general. Gavin is doing well too! He is just the cutest little guy in the world. He loves motoring around touching anythin and everything. He is a very busy guy. He has become so much more affectionate as well; which I love because that means we get to cuddle! He has showed and increase interest in books as well. All in all things are going great for now....I don't want to jinx it:)

Baby.....I'm coming home...

Gracie girl is coming home tomorrow!!! She is doing great. No oxygen, she is eating by mouth. It will take her 2-months to be back to more normal as in being able to pick her up under her arms, but....she is good. It will take another 6-months for her breast bone to heal completely. More surgery is expected before she turns 1, but the extent won't be known for some time. For now we just hope for the best and will help her fight to be as strong as she can. I hope the pain she endures now smooths the path for the rest of her life!! She is entitled to the world....ohh little precious one.

Grace's progress

Grace has been doing ok given the situation. Yesterday she had a fever and they had stopped her ng tube feeds, but the fever was gone today and they resumed her feedings. It appears to be a slow progress toward recovery, but Grace appears to be doing well. She is beautiful and such a wonderful little one. I just continue to pray that we keep doing as well as we are.

Pre-op appointment

Today was Grace's pre-op appointment. Blood was drawn and the procedure was explained to the best of their ability. It appears the extent of work is not going to be truely known until her chest is opened. It is all very scarey to me. I guess she is going to be hooked up to a heart and lung machine which will function as part of her heart during surgery. It appears this surgery is also not the end all be all, but yet another stepping stone. I guess we will know more after the surgery.

Surgery this Thursday

Grace will be undergoing open heart surgery this Thursday the 18th. They are replacing her pulmunary valve with and artificial valve and enlarging the pulmonary artery with gortex. She will also have a shunt put in between the aorta and pulmonary artery. Her saturation levels just have not improved and it is time for more help for her little heart.

This week will be very busy for us with Grace and her surgery. I was not expecting this to be so soon. The last time I spoke with the cardiologists this was not to take place for another couple of weeks, but they moved it up....way up. I will try to update more frequently during this time to keep everyone in the loop. Please keep us in your thoughts and prayers...Grace really needs it and so do I:)

More Surgery in the Horizon

The verdict from the cardiac conference was that Grace will be undergoing more surgery within the next month. They are going to try to open up her pulmonary artery with a procedure and if her saturation levels do not improve we will be going for the shunt surgery. I have accepted that this is the next step that is needed. This has not been easy to accept, because there are always risks involved, but I do know it is for the best. Today we have NO appointments and yes, I have actually been able to clean the house for the first time in weeks. Keith has stayed on top of the vacuuming, but the rest was on hold until today:) I already feel better sitting in a clean house with no appointments or people stopping by to prod and poke at little Grace (medical people). I always welcome other visiters because they are here to enjoy Grace not do yet another check up. I do not mean to complain about all of the help she gets, but I also just want her to have a couple days where she just gets to be a baby and not a patient.

Gavin has learned to walk!! He was cruising around the furniture and taking a couple of steps, but now he is dead set on walking. When he falls down he crawls over to something and gets back up on his feet and continues to walk. It is so cute:) He looks so happy and proud of himself. I do believe he is pleased with his work. He also can reach all of the door nobs now, so it is officially time to safety proof the whole house. He is truely amazing!!

Stage of Grief: MAD

So I guess I have returned to the anger stage in the grieving process. I talked to the cardiologist's nurse today because Grace's saturation levels have been extreamly low today. We haved up her oxygen to 1 1/2 liters versus the 1/2 she is typically on today due to this. The cardiologist is leaning toward the shunt....which like I said before has it's on set of complications. With this shunt she will be on even more meds and need an even closer eye and then there are even more surgeries that may possibly be needed along with that. I knew this might happen but it does not ever truely prepare you for the information non the less. So, I am just stuck at mad right now.

Fine Line

We went to the cardiologist yesterday. He said he was still unhappy that her saturation levels have not improved up into the 80's. He started talking about the shunt surgery again; however made it sound like she will present with congestive heart failure symptoms after the shunt, although she won't be oxygen dependent. I was not really happy about this info or convinced that it is a better option from where we were already. I questioned why we would do something that would not cause great improvement and may cause other complications that seem worse than she is at the moment. He kept saying that we a walking this fine line and she is a borderline case and no one is sure of the best way to handle her case. I pointed out some other symptoms she has been presenting and no we are seeing and ENT on Monday and a GI doc on tuesday. Hopefully this will give us more information. I am hoping the doctors can continue to help her and make the best decisions for her care. She continues to be stable so I really want to make sure that whatever interventions she endures are going to be helpful and not harmful....we want her to feel better.....

New week

We have a cardiologist appointment tomorrow. I have talked to the nurse who came yesterday...she said Grace looks very good. She is still gaining weight which is very good, but she has been taking her sweet time to drink her bottles. Last night she woke up to eat and then we both fell asleep when I was burping her. She slept on my chest for 3-hours.......we must have both been exhausted. Today her heart rate has been very good as well as her oxygen saturation levels!!!

Today is also Gavin's first birthday. Keith and I baked him a cake last night. I am sure he is really going to like his cake!!! He has had a rough couple of days, he had an ear infection and then an allergic reaction to the antibiotic he was on. Poor little guy just never catches a break. He ate chicken parm. last night with pasta.....he wanted to feed himself so he was mess..... after a bath he was back to his squeeky clean self!! I can't wait for his cake tonight...and then probably a much needed bath after he gets it all over himself!!

I will have more news after tomorrow about Grace...so I will post then.

A couple of days..

We have made it through 1 cardiology appointment and 1 ped. appointment and we have 1 nursing appointment for tomorrow. So far all has gone well. No more recent blue spells. The cardiologist did another echo and explained to me the complications that we still face. We are waiting to see if her heart will compensate a little better with the complications over time. He said if her oxygen saturation levels improve it means her heart is compensating if not then we are looking at more surgery. He told me it could be weeks or months before we know what we are going to do, but it the mean time Grace can NOT get sick and we can not let her get upset and cry......so any time she gets upset we drop everything and make her comfortable. So, we continue to wait and see what the next step will be for little Grace.

On the other side poor Gavin has an ear infection. He was really sick today and had a sleepy crabby day....poor little guy:( We had to keep the two very seperated today...so Gavin played in the main room and Grace was stationed in the Dining room. I had to have washed my hands over 15 times today!! I hope I also don't get sick, or we are really in trouble.

Other than that I am already tired of being stuck at home:) I miss talking with all of my friends at work:)

Home again

Grace came home yesterday evening. She has been doing great so far. We are making the many Dr. appointments for the next two weeks today.

Gavin also started really walking. He took 6 steps at Cathy's house today. He has been ready to walk for some time, but has been holding back for some reason. Keith has taken him to the park the past two days and he has enjoyed the swing and the slide!! He is getting so big so fast:) It is hard to believe he is turning 1!! My baby is turning into a little boy:( He will always be my baby:)

Another Monday

Grace is still in the hospital. They think this might have been all do to reflux, but they were doing an EKG and getting a GI consult over the next day. I know the EKG was done today, but GI probably won't see her until tomorrow. I am glad they are looking at everything before we go home again. We will see what tomorrow brings. I did get to spend several hours with her today, but I still miss her so much. It is not easy missing so much of her early life. I know she is in the best place right now, but it is difficult splitting the time between Grace and Gavin....which also splits time between Keith and I too. It is just a bummer.

POOP

We are back in the hospital. She had a period of time where she lost her color yesterday and was blue. We went to the ER and were transported back to Christ Hope. She has been fine ever since she has been in the hospital, but her sat. levels were lower than normal. I am sure she will be there for a couple of days.

Our 1st day!!

Today was the 1st full day home with Grace and it was not so easy. The day started out hectic with Gavin getting up early and Grace deciding not to stick to her schedule of eating every 3-4 hours. She instead decided to eat smaller more frequent meals today. This would not have been such an issue if she had better timing. She would decide to eat at the same time Gavin was earting or needing changing. Poor Gavin ended up walking around in his diaper for 1 and 1/2 hours while I calmed Grace down because if I set her down to go get his pants she would have continued to scream. This is going to take some better planning like making sure I have Gavin's PJs ready to go downstairs for when Grace decides that she is discontent.

Since Grace is not as easy to move around the house due to being connected to oxygen and monitors it is not as easy to do everyday tasks. If your holding Grace and you need something on the other side of the room, you have to make the choice of putting her down to cry....ordeciding how badly you need the object that is not within 2 feet of you. This will definitley make me better at planning out the simplest tasks of the day.

So far we have made it through day 1.....just many more years to go.....

Mama, I'm Home!!

GRACE IS HOME!!!! She made it just in time for her big brother to head off to bed. I don't really think this has sunk in for Gavin quite yet, but the dogs were very interested in her when she came home. They were sniffing her and Marley was barking at her because she was crying. Grace wanted to eat shortly after her car ride home and then made a poop!! How exciting. She then demanded to be held until she dozed off to sleep. I of course gave right into holding her, and I love seeing her little sleeping face.

We already have nursing coming tomorrow between 11 and 1 and have two Dr. appointments as well as three nursing visits for next week!! Boy are we going to be busy!!

Wednesday is the BIG DAY!!!

Grace will be coming home for the first time on Wed. There is so much to do before she comes home. Tomorrow is a long day at the hospital for us. I will be there for her car seat challenge in the afternoon and then we will be back in the evening for training on all the monitors and oxygen that will be at home and on the go with her.

Wed. all of her monitors and oxygen machines will be delivered to the house and set up, then later in the evening we will be taking her home. We will have nursing visits several times a week and many weekly Dr. appointments. Who knew this little one was going to have such a full schedule at 3-weeks old:) I actually went out and bought a planner today just to keep all of our appointments straight. I do not want to miss any of our many visits. I am sure Grace can't wait to come home. The NICU is a very busy place, I am surprised she gets any sleep!! Pretty soon I will be the one getting any sleep. So everyone remember this is the time I still have some of my marbles....after a couple sleep deprived days and nights they are sure to be gone:)

Keeping our fingers crossed

We are still not sure what day Grace will be coming home. The cardiologist was ready to ship her out the door on friday; however, the neonatologist wanted to watch her oxygen saturation levels over the weekend. So far she has still been doing well. When we were at the hospital today, her levels were a little lower than they had been again and she was given a higher level of oxygen through her nasal canula. We are hoping that she continues to do well so that we can take her home.

The good thing is that the hospital really wants to make sure she is doing well before they let her leave. There are still so many things that have to be set up before she comes home. We have to have the oxygen and monitors sent and set up at the house, she has to pass a "car seat challenge" at the hospital, she needs her pictures taken, we have to be trained on how to use all of her monitors and oxygen and I am sure there is even more that I do not know about. All of these activities will not begin until tomorrow, so it will be a busy week for us.

The good news is I am no longer restricted from driving--after my c-section. Although it is nice to be driven around, I really missed not being able to go somewhere whenever I wanted. I also have been able to start picking Gavin up again too!! He is such a big boy!! We have been digging out all of the baby odds and ends from Gavin for Grace to enjoy. I am just so thrilled to have her coming home...It is hard to believe that she is almost 3-weeks old already...and she has never even come home yet:)

Something short of a miracle.....

So, the info from the cardiologist today was that the PDA finally closed. Grace's nasal canula was removed yesterday, but replaced last night when her saturation levels dropped over the evening. With the extra oxygen, she has been able to keep her oxygen saturation levels between 75-85, where they shouldbe for a baby with her condition. The decision that was made at last nights grand rounds was to send her home with oxygen and monitors and not do the shunt surgery at this time. They are not certai if she will need any other surgeries at this time, and will be followed by a cardiologist on a weekly basis.

This was fantastic yet, frightening news. I am so happy for her not to need any further surgey at this time, but I am hoping she does well with her oxygen and monitors when she comes home. This is quite a bit of responsibility.

There are still many things that will be done from the hospital to prepare for her trip home. We have to have the equipment delivered to the house and be trained how everything works as well. They will also be doing some tests with her at the hospital to make sure that she is truely ready to come home.

The cardiologist also said that she does not have Ebstein's anomoly. This was also such good news. So, we will just wait and see what the right ventricle of her heart wants to do over the next couple of months to see if anyting further needs to be done.

I was praying so much for this news, but I never thought that this would be true!!

no news until tomorrow

Tonight is the grand cardiac rounds. Grace's case will be discussed and decisions will be made. We will not know the outcome of these rounds until tomorrow. Tomorrow will be packed with new information.

Grace looked great today. Her saturation levels were looking good again, which makes me suspect the the PDA opened itself up again, but I won't know that info until tomorrow. She ate well today, but then spit up half of what she ate:( Poor little baby. We have so much fun together already. She has really long fingers that like to pull out her nasal canula...and when she was getting her echo test today...she suceeded at pulling it out. She is a lot like Gavin in that she always wants to know what is going on around her and she fights sleep like you do not believe when she finally wakes.

We are all praying for good news tomorrow.........

Monday Monday Monday

I was able to stay at the hospital today to see the cardiologist do rounds. They have not made a final decision of the next step and will not do so until Wed. It is either go home on all the monitors she is currently on, and see what happens as her heart grows with her body or perform a shunt surgery with a full correction. I am not going to think to much about either option until they make their decision on Wed. evening. They will then sit down with us and have an in depth conversation with us once a decision is made. So we wait.

Sunday

It was great seeing Grace today. I was able to feed her and just hold her for hours while she slept. She is so precious, it is hard to even understand that her heart isn't working properly.

The weekend cardiologist called today to update me on her. He did not feel comfortable with her saturation levels dropping below 60, so her put her back on oxygen. He also said that she will most likely need the next sugery this week, but since he is only the "weekend guy", he was not going to be the one making the decision and that the week day team will probably be talking about the next steps tomorrow. He briefly discussed the probable next step surgery, which would be just one of many that she will need. It appears that this surgery has to be repeated every so many years to accomodate the growth of the heart. This was difficult for me to hear, because I was hoping that we would correct the problem now and not have to look back, but that appears not to be the case. I am so stressed already with this, I cannot imagine having to stress years from now as well.

Grace is absolutley beautiful. I really wish that she did not have to go through all of this now, or ever. I just pray that we will make it through this.

Sat. May 2nd

Unfortunatley things are the same as they were yesterday. We were only able to spend a short amount of time with her today. Hopefully I can stay with her a long time tomorrow.
I just want to hold her and comfort her as much as possible. I feel defeated right now....I just want someone to fix her heart now!!

Answers

I had the cardiologist paged at 10PM. I knew I would not be able to sleep until someone could tell me that it is ok for her saturation levels to drop so low. I was patient and waited all day for them to return my phone call---and this is the econd time this has happened. I know they are the best in illinois, but their communication could use a little help. Her saturation levels had dropped at times into the 50' s even under 1-2x when we were there. The cardiologist assured me that there would be no other damage that this causes. (My hospital friends, if you know anything different please call me or e-mail me at any time--but for now the cardiologist is saying as long as she is showing no other signs of distress, since it is the mixing of the oxygen and unoxygenated blood due to her heart defect it is acceptable for her levels to drop so low without any othe negative impact)

We won't be seeing her again until tomorrow afternoon, this is probably good, because they are going to let her stay like this for at least the weekend unless she shows signs of distress. This does stress me out.....I feel very responsible for her care and I just worry.

Well today was much of the same as yesterday. She had low oxygen saturation levels due to her heart condition with the monitors going off every couple of minutes letting us know that her saturation levels were dropping.

The cardiologist has not returned my phone call to answer my questions about her desaturating for two days in a row, so I am frustrated and mad at this point. I do not know if her levels dropping so low will negativley impact her in any other way such as brain damage so I am very concerned.

I would like to sit there all day long so that I do not miss the cardiologist, but I do not have that option. So, it has been a stressful and frustrating day and I want answers now...but can't get them. In the mean while Grace will continue to desaturate and I can do nothing about it besides worry. I really hate not having any control over this situation.

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.