She Made it!!!

So after 7 hours of waiting we got the news we have be awaiting for months. She made it through the surgery!!! They said there were no complications, which is amazing for this surgery, there are usually some hidden surprizes. They said Grace did amazing through all the steps.
That was the longest 7 hours of my life. I think the hardest part was saying goodbye. I can't explain what goes through your head as you are waiting, you try and play out ever situation in your head over and over. Kirk and I were so tense.
It all became worth it though once they came out and told us our baby was ok! We had to wait about another 45 minutes before they got her settled in her room. That first look at her was amazing. She was alive and healthy! It was shocking at the same time, she had 14 IV's running through her,  2 pumps that connected around her heart to pump out the extra blood, a breathing tube, and her chest was still open from the surgery (it was cover with a pad). After a few minutes all that faded away and didn't seem to matter. Today is the 23rd of December and the day after her surgery and she is doing wonderful. All her stats stayed where they were suppose to last night and she is even opening her eyes today! They said she may not be able to see us because of all the drugs she is on, they saw her eyes and tongue are the first to start coming off of the drugs. They are right let me tell you. She was blinking her eyes and keep sticking her tongue out like she was a frog. SO CUTE! They are hopeful to maybe be able to sew her chest back up tomorrow. If the swelling keeps going down, if not probably christmas day.
So all and all it has been a good day today. And she is looking very promising!!
I hope everyone has a Merry Christmas!
Will update after the holidays!

The Surgery

So it is 10:33a.m. and time is ticking slower that you can believe. We came to the hospital at 6:30a..m this morning to see our daughter before the surgery. We met with the surgeron and reviewed the sugery, then had to sign the relase form. I think that was the hardest part. Signing a form for a procedure that you know your daughter may not make it through. They said from start to finsh it should take about 6 to 8 hours. Still waiting on first update. Below is a little bit about the diease and the surgery.
Hypoplastic Left Heart Syndrome (HLHS) occurs in about 1% of all Congential Heart Disease. The left ventricle (LV) is hypoplastic, meaning it is underdeveloped or not functioning. The babies first surgery is called the Norwood procedure. The pulmonary artery is seperated from the heart and connected to the small arota. This enlarges the aorta and allows both oxygeneted and deooxygented blood to get to the body via the open pulmonary valve. Addtionally, a mondified Blalock-Taussig shunt is placed. This Gore-Tex Tube is placed between the subclavin artery, the artery that runs under the collar bone, and the pulmonary artery to allow blood to flow from the baby's upper body directly to the lungs, bypassing the heart altogehter. From the lungs blood flow to the heart to be pumped out to the body, carrying oxygen. This allows the baby to grow out of infancy with more oxygenated blood reaching the body. The blood flow through the pulmonary circulation allows the pulmonary arteries to grow better, in preparation for the next sugery, which will be at five to eight months of age.  At this time the Glenn procedure will be preformed.
Sounds a little confusing I know. It took me a few times of hearing it to grasp it. There are many complacations that could come, bleeding, brian damage, stroke, etc. Or it could just not accept the procedure done on it and shut down.
But obvesily this is not going to happen to my little girl!! She has been strong all week, and will continue today!! I will update later as we know ourselves.

December 18,2010

Last night after posting how wonderful my daughter was doing, I went back to the hospital to see her. As I was getting ready to leave at 11:30p.m. her breathing stat began to drop. The nurse tried adjusting somethings to fix it. Basically she stopped breathing and was riding the ventilator. This is ok for a little while, but you can not continue to live unless you kick back in a little. She ended up call the respitory team over, who called the doctors in.
When you hear the term critical condition you don't relize how much of a roller coaster ride they are on. They can change at any moment, and with in a minute be in serve distress.
They did a chest x-ray and it came out clear. They took some blood to do some test, so far it is negitve. He hand pumped her for a few minitues and she came back up in her stats. They are not sure if she had a blogage in her tube, or what it was. They put her on antibiotics for 48 hours just in case, she was getting sick and it was mucus blocking the tube.
My heart dropped when this happen. I am begining to relize what the next 10 weeks or so of my life are going to be.
She seems great today. Everything has been back to stable once again today. She did get a IV in her head today which I must say is a little umbareable to see, but they say it is the least painful spot and they have the best veins in there head. They are hoping this one will stay and not have to be moved. She is running out of spots for IV's.
 I got to change my first diaper of her's. I know this sounds crazy but it was so fun! I haven't really had a chance to interact with her. All I have gotten to do it just hold her hand, So changing that poopie diaper and taking her tempature was a big step today!
Danielle got me so adorable christmas outfits for grace. I had the hat and socks on her last night. I will post those pictures following.

Ronald McDonald House

So today is December 16, 2010. Grace did great today! Her stats stayed stable all day. This was the first day nothing changed, which is great. So the hope is it will stay that way for 5 more days till surgery. The surgery is still scheduled to be December 22, 2010 at 8:30a.m. unless something changes with her stats in the mean time.
We checked out of the hospital last night and into the Ronald McDonald house. This is a amazing facilty! They have different groups that come in ever night to donate there time and money to pre pare dinner for the whole house. There are lots of kids staying here so there are always volunteer's coming in to donate there time to have bingo session's or other games with the kids. People are constantly dropping off presents for the kids! So remeber next time you see that box for the Ronald McDonald house to drop those coins in! Take my word for it, you are definately making a difference in a child's life.
We also met a great pastor by the name of Fred. He has offered to do a Baptism for Grace, prior to the surgery.
Hope everyone is doing well. Thank you for all your great messages!

Grace Lynn Tobuck

Day One of Grace's Life

Grace was born last night at 8:34p.m. and weighed 6'11. Which is amazing for a heart baby. They are calling her the big girl in the NIC Unit!!  The labor was great. Better than with my first child actually. Her heart rate was up and down all day and the scare of the C-Section was haunting us all day. They came in about 1 1/2 before she was born and told us we had to deliver in the OR. They said because it was closer to the NIC Unit and we would be there in case of a C-Section. I was conviced they were lying to me and planing to do a C-Section, but not telling me because I kept insisting I didn't want one. But Grace did great and came out after about 45min. of pushing!!
I GOT TO HOLD MY BABY!! It was wonderful!! She was perfect!! You would have never know anything was wrong. I can't even explain the emtions. As any mother would know the emtions at that moment in time are so crazy, then add the fact that she was alive, healthy, and they let me hold her!!! She was sticking her tongue out at us!! She is beatiful.
They took her after about 5 to 10 min. That is when it became hard. They took her to the NIC unit to stablize her and start her IV so her heart value would not start to close. Then they began doing testing. After about 45 min. Kirk and the grandma's got to go see her. I was able to head up about 11:30p.m.,those 3 hours flet like days. She knew Kirk and I right away!
When we came back to the room. The cardilogist came down. He said everything looks the same with the condition. At this time they had not found any other problems. She was however breathing all her oxygen from her heart to her lungs, which sounds normal, but it is suppose to go to all other organs as well. This is why she looked so normal. Most heart babies are a purple color. He said that he could hopefully stablize this with medication.
Kirk didn't sleep a drop he kept going back and forth all night checking on her. In the morning I got to see my baby wide awake again. She had her MRI, and ECHO Testing (for her heart) done today. Both came out great. The rest of her tests will be tomorrow.
I came back to the room for a break and to see my other baby!! Thank you to Danielle and Katie for bringing her.
When I returned back to grace, they decided to place the breathing tube in her. This will control where her oxygen is sent and keep her alive. They do however have to drug the baby so they won't be in pain. Which is a good thing. I just won't be able to see my daughter open her eyes now till at least after her sugery. I know that we are lucky and got to spend more time with her awake then most. It is just still hard. This is something I don't think no matter how much you try and prepare your self you ever can. We have definately entered into a roller coaster ride. Now the next week will just be a waiting game till the surgery.
Thank you to everyone who prayed for my babies safe and healthy deliver. Please just keep us in your thoughts for one more week. We need Grace to stay stable and become stronger before the surgery. Then we need her to pull through from the sugery and come back to us!!!

Getting close to meeting baby Grace

Well, we have been in the hospital since yesterday.  Its about 4:45 pm now and hopefully baby Grace will be here soon. It has been a long slow process having the bay induced.  I am writing this for Lindsay because she is having contractions right now.  My mom and her mom are here now with us. Lindsay seems to be more relaxed now except that she is talking faster than normal. She could win the speed talking chasmpionship right now.  She was trying to delay the epidoral but she had to get it about a half hour ago.  I  am happy because she was in a lot of pain and  seems to be doing alot better .  Right now its just a waiting game, Im thinking atleast two more hours.  I feel sick to my stomach but I think thats from the hospital food Ive been eating,  Hopefully everything goes well at birth. So far no C section and looks like we will be doing it the natuaral way.  The only thing upsettiung is that Emily is not here but I know she is having fun.  I wish I could cuddle up with her right now and would love her to meet her baby sister today. Once the doctors take the baby, we wont be able to hold her again until atleast a week.  Its better this way with the future so unsure. 

New Date of Arrival!

So we had another doctor's appiontment today and they said to come back in on Sunday night, so hopefully by monday morning/afternoon we will be meeting our daughter. This will push back the first surgery date to December 22, 2010. We will keep you posted!

December 7, 2010

So we packed our bags yesterday and headed to the hospital with the expectation of getting to meet our Grace. We went to meet with the High Risk Doctors first to have the amniocentesis test done to see if her lungs were developed. Everything went smooth with the test. They hooked me up to some monitors after to make sure Grace was doing ok. Then we were told we were allowed to go and they would call us with the results. After two hours of waiting the phone rang.  The nurse said that her lungs were not developed yet and we could go home.  Obviously this would be the best thing for the baby. If her lungs were not ready we shouldnt have her but I was really ready to meet my new daughter.  I was so dissapointed that I started crying. I gave Kirk a long hug and we wiped away my tears.  We both knew it was for the best but I was really ready to move forward and was eager to find out about the baby. 
I have a doctors appointment tomorrow morning at 10:00a.m. to find out what day I will deliver next week.

From the Begining!!

It all started when we went for our 20 week scan. We thought we were just going to find out if it was a boy or girl. Two weeks later we I got a phone call saying there were some things wrong with the scan and they wanted us to go to a specialist to have a closer look. I was worried after this first phone call but the appointment was not going to be for a week and half, so I put it out of my head and figured that it was a mistake and that everything would be ok.

We went for the appointment thinking everything would be fine. They did a long ultra sound and then said she had to review the photos with the doctor and the doctor would be in to see us. At this point I looked at Kirk and started to worry. Why was the doctor coming in to talk to us?

The doctor came in and proceeded to tell us that the left side of our daughter’s heart never fully grew. She told us that it would definitely require a surgery. She also recommended that we take an amniocentesis test to find out if the baby had Down Sydrome or any other diseases. She said it is common when the baby has a heart disease to also carry other diseases. This test is performed by sticking a long needle into your stomach to test some of the fluid from the placenta. This test is risky for the first 48 hours while the sack is resealing. So we left worrying about a miscarriage, that the baby was carrying another disease besides this heart problem and finding out what was going to happen with this surgery.

I was a mess. I couldn't stop crying. I was so far along at this point if we had found out that there were other problems besides the heart disease then we would only have two days to decide weather to more forward or to terminate the pregnancy. The thought of terminating the pregnancy in the beginning was unthinkable. As the days went on, the thought started to become a possibility. There were so many things that could happen and so many uncertainties. I was worried I was not strong enough to handle everything. I wanted to her what everyone else would do even though I know nobody’s decision mattered but ours. I was so unsure, scared, and depressed.

The test came back that the chromosomes all matched and they thought everything would be ok. We had already decided to move forward. The following week after the results came back we had our appointment with the cardiologist.

We went into this appointment thinking "ok we can get through this one surgery". We sat through another 40 minute scan. The doctor came in to speak to us. We ended up there for over a hour and half while she explained to us that our daughter had Hyper Plastic Left Heart Sydrome. This was one of six rare heart diseases. She would require at least 3 surgeries in the first year to year and half of life. The first surgery would take place in the first week of life, the second between four to six months and the third when she reaches 25 to 30 lbs. We were told the first surgery holds a 20% fatality rate. We were told that our daughter would be born and we would have ten minutes to hold her and meet her for the first time before they take her away to the NIC Unit. This crushed me even more. They would have to hook her up to a IV right away to start her on medication to prevent her valve from starting to close. She would remain in the NIC unit for those days before the fist surgery while they perform a bunch of tests on her to confirm nothing else was wrong and to prepare for the first surgery. After the first surgery she would remain in the hospital for 8 to 12 weeks.

We went home again so upset and so unsure of what to do next. We both went back to work and everything kind of became a bad dream.  We had a follow up appointment with the cardiologist 4 weeks later. The doctor did not find any changes from the previous appointment. We reviewed some details from the first appointment since the day of the diagnosis was such a blur. She did find the one artery to be slightly smaller than usually. The artery should have measured 4 millimeters, however our daughter’s was measuring between a 1.5 and 1.7 millimeters. They said there was hope for this to grow, and to keep our fingers crossed because this would cause problems in the first surgery if it didn't grow.

At our next appointment 4 weeks later the artery showed growth- it was measuring between a 2.5 to a 2.8 millimeters. Again they want it to be around a 4 millimeters, but this was much more hopeful!!

My next appointment with the cardiologist was 4 weeks later. I was also able to meet with the surgeon and go over the first surgery again in detail. For the first time it started to become clear. Reality was starting to sink in and in three weeks we were going to do this. We made the plan: December 7, 2010 they were going to perform the amniocentesis test again to make sure her lungs were developed since it would be a few weeks early. If the lungs are developed then I will be induced. They said it was ok to try and deliver vaginally but if the baby even blinked a eye wrong they would move me into surgery for a C- section. They scheduled the first surgery for the following Wednesday (December 15, 2010). They took me on a tour of the hospital, including the NIC Unit and the PIC Unit. This was a wake-up call. This really was happening to us and this was coming quick. Have you ever seen an infant with a breathing tube down its mouth? That’s hard enough- try picturing it as your own child. Its devastating. I lost it again. Some of these babies we so drugged- it was unbelievably sad.

Once again went home and we put everything out of sight and out of mind. Now it is November 28, 2010 and it is hitting me hard.  This is happening next week. Our bad dream is going to come to a reality.  I keep thinking about all the “what ifs”. We are tired of waiting. We just want to meet our little Grace and know if she will make it.