Tuesday, March 30, 2010

Thank you

Thank you everyone for all of the prayers. My dad is doing well. His truck went off a 20ft hill off the side of the road. He is sore and bruised but we are lucky its not worse.

Jacob looked good today. They found another bacterial infection so surgery won't be tomorrow. If the cultures come up negative tomorrow then they think he will have surgery on Thursday. His lungs look really good so I think the extra time was good for them. His heart is holding strong. His oxygen levels have been great. He is still on the vent. He is taking a binky which helps him learn the sucking motion and will help with feeding later on. Thank you always for the prayers and support. Please keep them coming!

Jacob, I love you more than I ever imagined possible. I can't imagine my life without you. I am so proud of how far you have come already and how strong you are. I will fight for you always. Happy 1 week birthday baby boy.

Mommy, Daddy, and Aidan

Monday, March 29, 2010

Prayers for our family

We woke up today to a call from a hospital in West Virginia saying that my dad was in a bad car wreck. A girl lost control of her car and t-boned his truck into a ravine. He is alert and can move his legs and arms but can't move his neck or back. He does have pain though which is good. We are waiting on tests to come back.

My mom will most likely need to fly back to be with him. My brother is there but he will need her help. I told her that there is not much we can do for Jacob here and I will be ok even after my husband has to go back to WV. We are taking it one day at a time.

Please keep my dad in your prayers.

Jacob had a good night. His stats all look good. His lungs are getting stronger. We are just waiting on the virus to go away so he can have his surgery.

Thank you as always for all of the prayers and support.

Kathy, Andy, Aidan and Jacob

Sunday, March 28, 2010

Where To Send Mail

Some people have asked where they can send letters, cards etc. I can receive mail at the Ronald Mcdonald House...

You can send it to:
Philadelphia Ronald McDonald House
Kathleen Baker
Room #41
3925 Chestnut Street
Philadelphia, PA 19104

Some Pictures

Jacob has had a rough day. He is starting to get really annoyed at the environment and all of the talking, machines, not eating etc. He has been trying to pull out his vent all day! We gave him some baby Valium to calm him for a bit.

They are treating his infection with a few antibiotics. The hope is he will be rid of it in a day or two and have his surgery by Wednesday.

I look at this infection as a way of him having a few more days for his lungs to mature. The xrays look so much better already. They will monitor him and if his organs show signs that he needs the surgery sooner they will weigh the risks. As of now, he looks good so it is better to wait than to risk the infection spreading because of surgery.

Here are a few pictures I took a few days ago of Jacob's cool pad and some of him resting.

This is Jacob's bed. We decorated it so it was more comfy for him. His amazing nurses made him this cool sign with his name and the Monster's Inc. characters.

Another Setback

Jacob has a bacterial infection so his surgery will most likely have to be pushed back until Tuesday. They don't want to do this major surgery until he has been on antibiotics for at least 48 hours.

Jacob's kidney levels are much better. They said his kidney's are fine, the issue was never the kidneys themselves it was the fact that if they put him on the diuretics then the levels would increase and they didn't want to hurt his kidney function. He is peeing great without the diaretics.

His lungs have been about the same. They told me yesterday that they were not so much concerned about the fluid but more concerned about the lung function. Jacob's lungs were premature even though he was over 38 weeks. Boys tend to be slower with lung development. Thank God they did not do the csection at 37 weeks. They started a new thing with the vent yesterday which increases a thing called "peeps" to a higher number for about 10 minutes every 4 hours. This increases the pressure and conditions the lungs or trains them to do what they are supposed to do. So far he has done great with this and his levels are much closer to where they need them to be for surgery.

Jacob is now back on room air. He had been there before but on Thursday he had a hard time breathing and they had to put him back on oxygen. Now he is fully on room air again. He has the vent to help him out but no oxygen.

We found out the reason this little guys SATs or oxygen levels keep dropping is because of the shunt in his heart. Basically the way his anatomy works is of course different than that of a normal heart. When he gets upset and sometimes when he doesnt, his SATS will drop down to low 60's. They go back up quickly but he was giving us a scare. The nurses said that it is common with HLHS babies and that it will most likely happen still after his first surgery. The only thing you can do is try to calm them and keep them happy. In otherwords he will be very spoiled lol. They said he may turn blue when this happens but we will learn what to look for and when t o worry.

Saying our world is about to change is such an understatement. Life with Jacob will be somewhat complicated and scary but I wouldnt trade it for the world. I love him so much. He is getting more and more active, we are starting to learn his little personality.

He has fallen in love with his binky. He cries when it falls out. I am very happy about the binki addiction because he has learned the sucking reflex. Jacob will not be able to have breastmilk before surgery because his body is not strong enough to tolerate it. They give him nutrition through his IV. Babies that don't get to eat right away tend to loose that natural instinct of sucking and swallowing. Jacob may have more feeding issues than a typical HLHS because he has been on a vent for so long and because he hasn't been able to learn to feed prior to surgery. That is why this is so good. Now he knows the sucking reflex. Now we will just have to teach him to swallow. When he is ready I have TONS of milk for him frozen and waiting.

So that is where we are right now. He is amazing and so strong. He is so beautiful. I love spending time with my little guy. I will let everyone know when surgery is definate but for now please keep praying for him.

Love you Jacob.

Saturday, March 27, 2010

Sorry for not posting more often

I am sorry I have not been on here more posting. I have been so exhausted by the end of the day that I have not had the energy.

Jacob did much better yesterday. Boy is everyone right when they say it is a rollercoaster ride. His lungs did not change much but he was more comfortable and he didn't have oxygen issues like the day before. They are not doing a chest tube at this time. They are hoping the lungs will clear more on their own.

As of now his heart surgery is scheduled for Monday. This could change based on how he does but if he continues to improve like he has then he should be able to go.

I will give more details later I need to go play with Aidan some before I go to the hospital. Please continue to keep Jacob in your prayers.

Thank you all for the support and prayers, they mean so much to us.

Kathy, Andy, Aidan and Jacob

Friday, March 26, 2010

Prayers Please

Well we knew this would be a rollercoaster ride and it has. Jacob had a very very rough day yesterday. His lungs are very sick and he needs everyone's prayers.

Jacob has fluid in his lungs and now around his lungs as well. The fluid was getting better inside of his lungs but they had to pull back on his diuretic because it was hurting his kidney levels. When they did that, they noticed build up of fluid outside of his lungs. He needs a drug which we all have, its like a natural soap we make. Jacob doesnt have any due to his heart complications. When they gave it to him the first time he did ok but when they tried again his body did not like it and his stats dropped way to low. So he can't get that. So now we have to just wait for him to pee out the fluid from inside of the lungs. As far as the fluid on the outside of his lungs, they may have to put in a chest tube this morning to drain it.

Yesterday he had a very hard time breathing and keeping his o2 levels at a good spot. They had to tweak his vent all day and his oxygen crashed a few times. He crashed once with us right there, this was very scary. They have told us that the way his lungs are right now he could not handle the bypass he would need to be on for surgery. His lungs are very very sick. Until we get them better we have to wait. Waiting puts more strain on the rest of his body.

THey are thinking his surgery will be sometime early next week ut we have to take it day by day.

Last night he had a better night, his stats all stayed at a great range. Please pray the xray turns out better this morning. We need a miracle.

Jacob we love you more than you could ever know. Please stay strong.

Love Mommy

Wednesday, March 24, 2010

A Better Day!

Our little fighter did so much better today! I am so proud of him.

Yesterday was very scary for Jacob and all of us. Not only did he have to have a stint placed but his lung function was really bad. He was on 100 percent vent and oxygen and still couldn't get his SATS balanced. The x-ray showed a lot of fluid on his lungs and we were not sure if was going to make it. It was very touch and go.

However he did level out and had a very peaceful night and a great day today!

The fluid on his lungs is not completely gone but it is coming off which is good. His x-rays look much better. He is on a diuretic and is having very wet diapers. Speaking of which I got to change his diaper today! Funny how the little things make us so happy. They are hoping the fluid will be completely gone in a day or two.

He had an extensive heart echo and everything looked good. The stent they placed looks good and the heart is functioning the way they need it to right now.

His Oxygen levels have been great all day. He is off of Oxygen and breathing room air. The vent is down to 20%. He has been trying to breath on his own so they changed the sensitivity of the vent so that he is able to breath some on his own and his levels are still doing great. The vents pressure is still a little high so they would like to see that come down a little because right now his lung function is still not where they want to see it, baby steps.

Jacob's color looks much better today. The bruising has started going away and they said that after talking to the neonatal staff about the delivery they are convinced it was from the rough birth. They had a hard time getting him out of me so they think thats why he was so beat up. At least its not an auto immune problem.

The highlight of my day....
JACOB OPENED HIS EYES FOR US! He has been moving around a lot today since he is now off of the paralytic. He was opening his eyes and looking around.

I have been singing "You are my sunshine" to him and he seems to like it. Andy and I sing it to Aidan everynight so I thought it may be familiar to him. It is a Baker tradition.

• He opened his eyes and is moving around
• I changed his diaper, diapers are very wet which is great
• Oxygen levels and stats are great
• Fluid is coming off of his lungs
• Heart Echo looked good

Jacob I am so proud of you. Stay strong baby boy. So many people are praying for you.

Mommy, Daddy and Aidan

Tuesday, March 23, 2010

Welcome to the world Jacob Dylan Baker

Jacob Dylan Baker
Born 9:23am on March 23rd, 2010
7lbs. 12oz.
Looks exactly like his brother Aidan. Even weighed the same at birth.

I will keep this short for now but promise to do a full update tomorrow. Jacob has had a very rough start. The tissue in his heart collapsed soon after birth and caused too much restriction at the atrial septum. They had to do a heart cath to open it up. They placed a stint and so far his oxygen is doing good and the heart looks like they want it to. However there is fluid on his lungs and they are trying to get that off. His lungs are not in good shape, he apparently had gotten very very sick because of the heart. They can't do his heart surgery until they can get the lungs working properly so please pray that his lungs clear up soon.

Jacob also has bruising and they are trying to see if its from them having a hard time getting him out of me or if there is something else going on, such as an clotting disorder.

Jacob has to be on a vent for now, although they have lowered it. He is completely sedated and paralyzed so his body can heal.

I will update tomorrow but until them please pray for Jacob.

Love you Jacob, please have a peaceful night my sweet baby boy

Wednesday, March 3, 2010

We have a date!

We had a great visit to C.H.O.P. yesterday. Jacob did great and I am so proud of him!

My c-section is scheduled for March 23rd, around 8:30am. They want to make sure he is as mature as possible and I will be 38 weeks on that date.

First off I want to say I will never complain about rush hour in WV ever again! I sat on I-95 for an hour and a half just trying to get into Philly yesterday morning. Luckily I left very early.

I had my appointment with the OB staff first and they did an ultrasound to see how he was growing. His measurements showed he weighed a little over 6 pounds. He has been gaining about a half a pound a week which is really good. Like usual his lungs were breathing away the whole time. They told me that he was a happy healthy baby in me, which is kind of bitter sweet. I am so glad he is happy and developing so well but I know once he is born he will have to fight. But he got an 8 out of 10 which they said was excellent. They said that the heart condition has not affected his development at all. Babies who are very sick tend to not mimic breathing much and don't grow as well. He is doing great! He is still kicking away all of the time so I know he is still my little fire ball! They said they were very happy with what they saw.

I met with the anesthesiologist and discussed the procedure for a repeat csection. Its not as easy as the first c-section because of scar tissue so they need to give the spinal but also put in a line so they can give me more if it takes longer. We discussed other medications as well. I told them I don't want any drugs that will knock me out or make me loopy. I am all for pain control but I also want to be alert and know what is going on with Jacob.

I also met with one of the surgeons and discussed getting my tubes tied. Andy and I have talked about this subject a lot over the past few months and we both agree that no matter what the outcome we are not going to have any more children. HLHS may be linked to genetics and I just can't go through another pregnancy wondering/fearing that this could happen again. There are many cases where it happens multiple times. If we didn't have Aidan I wouldn't do it but we do have him and are so blessed his heart is ok. I pray Jacob makes it and I think he will, we will have our hands full and won't be having a third. If something happens and he doesnt make it, I just could not risk it again. So I will be having a tubal at the same time as my csection.

Then I went for Jacob's heart echo and hyper oxygenation test. This is the one I always fear. I am always worried about his atrial septal defect. He passed with flying colors! I actually heard the "B" word again "Better"! Our cardiologist and coordinator are so great, they have been so sweet and helpful through out all of this. I am so grateful to have them.

We went over the results and they said Jacob's lungs reacted very well to the oxygenation test and the blood flow looked even better before so they are not worried about the atrial septal defect. THANK YOU GOD! They planned a regular c-section. Jacob won't need to have immediate intervention. If it had gotten worse then they would have had to take him immediately and possibly punctured a hole in his heart right at birth. That would have made him very sick and his odds would have been much worse for surgery. BUT, they don't think this will be the case so they are not planning any of that. They think he should be fine to wait for surgery. His numbers have gotten better and better with each echo so the prayers are working and I can not thank everyone enough for that. I am so proud of my little fighter and I know he will do great.

I also met with the lactation consultant and discussed what the routine will be and how he will be feed. I got a lot of great information. A research coordinator also came in to discuss different research projects they have going on. As much as I want to help find a cure for this and help with research I also just can't put Jacob through anymore than he already has to endure. I told them that if they want my blood or Andy's that is fine but I just want Jacob to only go through the bare minimum which is already too much. I can't put him on experimental drugs or other tests that could affect his recovery. I feel bad because I want to help but I just can't do it at his expense. He is already having to go through way to much. Maybe when he is older we can help participate in one but for now my whole family agrees its just to risky.

So overall, a GREAT day. The test's could not have gone better. He weighs 6 pounds, due on March 23rd. Echo showed great function and blood flow so normal c-section planned. Ultrasound showed he is developing great and thriving.

As always, thank you from the bottom of our hearts for all of the prayers and support. Please continue to pray for baby Jacob. I know he is a fighter and he can beat this and I will do everything in my power to help him through.

We love you baby Jacob and will fight for you always. We are so proud of you already!
Love Mommy, Daddy, and Aidan!