Happy Halloween!!! What a beautiful fall day for trick or treating. Too bad we won't get to enjoy it outside. Instead of trying to find a safe place in the Kansas City area to go get some yummy candy we are probably going to hit up a mall to see what we can find there. Yesterday Caleb didn't want anything to do with his dragon costume, but this morning was different. He wanted to put his costume on when he saw it again. That didn't last more than 1 minute after I got it on him. Hopefully we'll be able to get it on him tonight when we go find a mall. We've had the little squirt with us since Tuesday now and I think it's been that long since the last posted on our blog. Of course there is no correlation. He's been keeping us busy and of course happy too. There are lots of toys here at the Ronald McDonald House for him to play with.
Hannah is going. That's what I tell people when they ask. She'll more than likely be off all of her drips tonight while being fed "hard" medicine by mouth. She'll be on two medications now since she doesn't want it any other way. They tried to take her off all of her medications and breathing tube for second time earlier this week, but didn't respond well again. Luckily they were watching her more closely this time and they were able to take care of it sooner than later. We should be out of the PICU tomorrow if everything goes as planned and be one step closer to coming home.
The opthamologist stopped by Hannah's room on Wednesday to give her an eye exam. Hannah had a previous one with a doctor in Topeka, but we didn't like how Hannah was treated by her. We weren't given much hope for her eyes and basically the doctor said that there wasn't anything that she could do for her. So we did what any rational parent would do, we got a second opinion and the outcome of the exam was the same unfortunately. Coloboma in both eyes effecting both the retina and the optic nerve. I was reading up on coloboma after the news again and it said that in "rare" cases the optic nerve will be affected. Once again our little princess had to go out of her way to be the rare case or the exception, and that's the story of her precious little life. What does this mean for Hannah? She will have limited vision in both of her eyes, but there is still a possibility that she will have some. We don't know to what extent her vision will be effected until she is about 3 years of age, essentially we won't know how good her vision is until she can tell us what she can or can't see. What was different with this doctor? Dr. Hug laid out a plan for Hannah and what she would do with her to help her work with the vision that she does have, something that the other doctor didn't do with us. Dr. Hug had already requested that an eye specialist be assigned to Hannah and work with her as she grows. She also has several future visits lined up to follow Hannah over the next couple of years. I think we are going to like this doctor. All in all Dr. Hug's bed side manners were very good. Not once did she tell me that Hannah was blind like the other doctor did several times.
What a roller coaster ride it's been with our princess. We are looking forward to be going home with her soon, but it's far from over. There are still many more things that the doctors need to do to help Hannah function properly. We learned of something new today. Her respiratory rate has been fast since the operation and the doctors had been telling us that she just needed time to recover. Today I asked another doctor what it meant for Hannah's breathing to be fast still and he told us that her left side of the heart might not be functioning properly. It's part of her congenital heart failure that she was born with. New news to us, and I wonder how long ago they determined that because we've asked several times before and didn't hear that. So where does this leave us? With a bunch of more questions. What more does Hannah need done to her? Is there any correcting this? The list goes on and on but we probably won't have anything answered until next week when we get to talk to a cardiologist again.
And in the midst of all of this going on Caleb can't wait to see baby sister again. He can only go into the lobby of the hospital because of the flu season. That's been difficult for all of us. Every time we take him over to the hospital to drop someone off or to change who gets to play with Hannah he remembers that baby sister is there. He'll just start saying "baby, baby" and all we can do is show him pictures right now. Hopefully his reunion with his baby sis will be soon.
We appreciate everything that people have done for us and all of the prayers that have been given to our family.
Ricky
Saturday, October 31, 2009
Tuesday, October 27, 2009
It takes a Village Day 12
Monday's Happenings....
Hannah had a good day today. She is doing great. They are slowly weaning her from the vent. They tried to go down a little more but the commotion from her roomy agitated her just enough that had to go back up on the vent. They were able to take her urine cath out which is a good thing and they started up her feeds again. She is getting a very small amount but at least she is getting some real food in her tummy :)
I called Grandma Teed tonight and she informed me that Caleb has started calling her mama. This just broke my heart! At what point did my child forget he had me, his mom? He will be home Tuesday (today) afternoon. I find myself so excited yet heavily burdened. I have 2 children who need me? How do you choose one over the other? You don't! So you decide who needs you more and up to this point it has been Hannah. After calling my in-laws today it became clear to me that Caleb needs my love now. He needs my attention.
I am now faced with how can I be in 2 places at once? The answer is I can't, I need help. Hannah needs someone to be here with her, to be her advocate but I need to be there for Caleb now and Ricky has to work. The problem is time stands still in hospitals but outside these many walls life goes on. I am so torn. So what to do? Everybody has been asking what they can do for us, I figured it out, I made myself ask for help, this was not an easy thing. How do you ask people to help you watch your kids when I should be capable of doing so? You let go of your pride!
I called the RS president in our ward and explained the situation at hand and with so much love and concern she said we will figure it out. That is just what she and many others are doing. There are women I don't even know who are willing to come sit with Hannah during the day while I stay at home with Caleb and give him some much needed stability.
I once again am finding myself overwhelmed with the love and support that others are offering my family. These are selfless acts of love that the Savior has taught by example. My hope is that some day I will be in a position to give freely of my love serve others in need.
I am not going to pretend that I like having to ask other women to come sit with Hannah because I do not like it. However, it is clear that Caleb needs his mama at this time in his life. So I will put my trust in the hands of these wonderful ladies and let them help me. Thank you to all who are willing to help and for all the prayers offered in our behalf! Thank you Kayleen for raising my doodle bug (Caleb) these past 2 weeks. We love you and John and we are so grateful for all that you have done. I am finding that at this point in my life it is going to take a village to help raise my children.
Love,
Sam
Hannah had a good day today. She is doing great. They are slowly weaning her from the vent. They tried to go down a little more but the commotion from her roomy agitated her just enough that had to go back up on the vent. They were able to take her urine cath out which is a good thing and they started up her feeds again. She is getting a very small amount but at least she is getting some real food in her tummy :)
I called Grandma Teed tonight and she informed me that Caleb has started calling her mama. This just broke my heart! At what point did my child forget he had me, his mom? He will be home Tuesday (today) afternoon. I find myself so excited yet heavily burdened. I have 2 children who need me? How do you choose one over the other? You don't! So you decide who needs you more and up to this point it has been Hannah. After calling my in-laws today it became clear to me that Caleb needs my love now. He needs my attention.
I am now faced with how can I be in 2 places at once? The answer is I can't, I need help. Hannah needs someone to be here with her, to be her advocate but I need to be there for Caleb now and Ricky has to work. The problem is time stands still in hospitals but outside these many walls life goes on. I am so torn. So what to do? Everybody has been asking what they can do for us, I figured it out, I made myself ask for help, this was not an easy thing. How do you ask people to help you watch your kids when I should be capable of doing so? You let go of your pride!
I called the RS president in our ward and explained the situation at hand and with so much love and concern she said we will figure it out. That is just what she and many others are doing. There are women I don't even know who are willing to come sit with Hannah during the day while I stay at home with Caleb and give him some much needed stability.
I once again am finding myself overwhelmed with the love and support that others are offering my family. These are selfless acts of love that the Savior has taught by example. My hope is that some day I will be in a position to give freely of my love serve others in need.
I am not going to pretend that I like having to ask other women to come sit with Hannah because I do not like it. However, it is clear that Caleb needs his mama at this time in his life. So I will put my trust in the hands of these wonderful ladies and let them help me. Thank you to all who are willing to help and for all the prayers offered in our behalf! Thank you Kayleen for raising my doodle bug (Caleb) these past 2 weeks. We love you and John and we are so grateful for all that you have done. I am finding that at this point in my life it is going to take a village to help raise my children.
Love,
Sam
Sunday, October 25, 2009
Everything is obvious in hindsight Day 11
These past two days have been rather calm. Hannah is recovering from Thursday and is still hooked up to the ventalator and a lot of medicine. They haven't made any real changes with her medical care for about three days now and that is why Sam has allowed me to write the blog today because there isn't anything exciting to write about. I must warn you now that this blog is very informative about our situation and may be a little dry so continue on at your own risk.
The nurse was in here a minute ago and started to wein Hannah off of one of the medicatioins. Yay!!! Right now we are watching her CVP number, which tells us her central venus pressure (how hard her right side of the heart is working). Yesterday Hannah's CVP number was 20 and now it is down to 15, ideal is 8 to 10, so we are almost there. The reason why this number is high is because her heart is not used to the changes that the doctors made during the surgery. Her heart continued to work extra hard after it was off of the medications and caused blood to start backing up to her kidney. Blood started to back up into her kidneys because she has narrow pulmonary artearies and also because the two valves on the right side of the heart that prevent backflow aren't functioning properly (all of this is common with tet babies and for certain reasons it was more pronounced in Hannah's situation).
Since Thursday I've had a lot of time to look into Hannah's situation. The reason why all of the doctors came running into her room and hooked her up to the machines again is because her lactic acid numbers were elevated to 22 (normal is 1.5 and critical is >45). Things that I've learned: What possibly caused the lactic acid levels to be elevated in Hannah's body was due to heart or kidney failure (she didn't have kidney failure but it was getting backup with excess blood from the heart), or due to the lower blood flow (she had a low heart rate, 80 to 95 bpm, and her hemoglobin was significantly low). Because she had low blood flow this would have caused her oxygen saturation levels to drop (Hannah's O2 level was anywhere from 92 to 84% when the sensor was working) and low oxygen levels cause an increase of lactic acid production. Some other signs that Hannah had were rapid breathing (Hannah had 60 to 80 breathes per minute and normal is 20), serum pH less than 7.35 (Hannah's labs showed her pH at 7.3 and normal is 7.35 to 7.45), and she looked pale.
Yes, I learned all about lactic acidosis. Doesn't that sound fun?
Is it too much to expect a nurse to recognize that something wasn't right with Hannah's situation when there were both visual (Hannah looking pale) and technical signs (the numbers on the monitor and lab result) telling her that something was wrong? In hindsight it may seem obvious that something was happening to Hannah, but isn't that their job, especially with an infant that just had major heart surgery. Unfortunately we had to go through this experience but since then we have been satisfied with the nursing care that she has received. The great news is that she is progressing ever so slightly and will be coming home sometime within the next few weeks.
Ricky
The nurse was in here a minute ago and started to wein Hannah off of one of the medicatioins. Yay!!! Right now we are watching her CVP number, which tells us her central venus pressure (how hard her right side of the heart is working). Yesterday Hannah's CVP number was 20 and now it is down to 15, ideal is 8 to 10, so we are almost there. The reason why this number is high is because her heart is not used to the changes that the doctors made during the surgery. Her heart continued to work extra hard after it was off of the medications and caused blood to start backing up to her kidney. Blood started to back up into her kidneys because she has narrow pulmonary artearies and also because the two valves on the right side of the heart that prevent backflow aren't functioning properly (all of this is common with tet babies and for certain reasons it was more pronounced in Hannah's situation).
Since Thursday I've had a lot of time to look into Hannah's situation. The reason why all of the doctors came running into her room and hooked her up to the machines again is because her lactic acid numbers were elevated to 22 (normal is 1.5 and critical is >45). Things that I've learned: What possibly caused the lactic acid levels to be elevated in Hannah's body was due to heart or kidney failure (she didn't have kidney failure but it was getting backup with excess blood from the heart), or due to the lower blood flow (she had a low heart rate, 80 to 95 bpm, and her hemoglobin was significantly low). Because she had low blood flow this would have caused her oxygen saturation levels to drop (Hannah's O2 level was anywhere from 92 to 84% when the sensor was working) and low oxygen levels cause an increase of lactic acid production. Some other signs that Hannah had were rapid breathing (Hannah had 60 to 80 breathes per minute and normal is 20), serum pH less than 7.35 (Hannah's labs showed her pH at 7.3 and normal is 7.35 to 7.45), and she looked pale.
Yes, I learned all about lactic acidosis. Doesn't that sound fun?
Is it too much to expect a nurse to recognize that something wasn't right with Hannah's situation when there were both visual (Hannah looking pale) and technical signs (the numbers on the monitor and lab result) telling her that something was wrong? In hindsight it may seem obvious that something was happening to Hannah, but isn't that their job, especially with an infant that just had major heart surgery. Unfortunately we had to go through this experience but since then we have been satisfied with the nursing care that she has received. The great news is that she is progressing ever so slightly and will be coming home sometime within the next few weeks.
Ricky
Friday, October 23, 2009
Back to Square One Day 9
We're almost back to square one. I'll start by saying that Hannah is stable again and looks to be much more comfortable today.
Hannah's day started early around 5am when the doctors intubated her to help relax her body from tring to breath so hard. Then on rounds at 9am the doctor put in orders to start drips so now Hannah looks just as she did a couple of days ago with a breathing tube and 6+ different medications helping her recover from her spell yesterday.
It's been a very quite day and we like quite days. The doctors aren't doing anything different for her tonight so we'll have to wait and see what progress she makes through the night. Oh, and we have the nurses that we like again, the ones that are attentive to our child. So we have been having a great day. We have gotten a lot of apolagies and told this will not happen again. Dr. Allen went over Hannah's blood gases and labs from yesterday and there was plenty of warning that something wasn't right. What happened yeaterday could have been prevented. We are grateful she is well again.
This was a great lesson learned for us as parents, to be more proactive with our child's health. Yes, this may seem obvious, but when you have doctors and nurses taking care of your child 24/7 its hard to contradict what they tell us so speak up. All in all her care has been great and the doctors have taken great care of her and we are happy that they were able to turn our little Miss's health around so quickly.
Hannah's day started early around 5am when the doctors intubated her to help relax her body from tring to breath so hard. Then on rounds at 9am the doctor put in orders to start drips so now Hannah looks just as she did a couple of days ago with a breathing tube and 6+ different medications helping her recover from her spell yesterday.
It's been a very quite day and we like quite days. The doctors aren't doing anything different for her tonight so we'll have to wait and see what progress she makes through the night. Oh, and we have the nurses that we like again, the ones that are attentive to our child. So we have been having a great day. We have gotten a lot of apolagies and told this will not happen again. Dr. Allen went over Hannah's blood gases and labs from yesterday and there was plenty of warning that something wasn't right. What happened yeaterday could have been prevented. We are grateful she is well again.
This was a great lesson learned for us as parents, to be more proactive with our child's health. Yes, this may seem obvious, but when you have doctors and nurses taking care of your child 24/7 its hard to contradict what they tell us so speak up. All in all her care has been great and the doctors have taken great care of her and we are happy that they were able to turn our little Miss's health around so quickly.
Thursday, October 22, 2009
So close yet so far away... Day 8
Today has been a long day. When I left Hannah at 2am she was doing great. We got to the PICU this morning and Hannah was doing everything on her own but her numbers were funky. I mentioned it to the nurse and she told me not to look at the screen and that it was normal. I told her continuously through out the day that something was not right. Note to self... a mothers intuition is always right! I do not understand why the care givers ignore this natural fact of life.
Hannah had orders to go to the floor today.
She did not make it to the floor. Her numbers were telling us she was having trouble but the nurse on hand was not paying attention. We feel the situation could have been handled better had the nurse been more attentive. This is not all on the nurse, we as parents should have gone to the charge nurse sooner. Maybe her nurse was having an off day. It happens. I just don't like it when that day is on my daughters watch.
Hannah got cold all of a sudden and it was literally about 10 minutes and we had like 12 people in our room. Her surgeon Dr. Lofin so happened to be in the PICU when she did her spell and he said she was not to leave the PICU. Dr. Allen took charge and did what was needed to be done once he was informed there was a problem. (We requested to have him take a look at Hannah). They worked fast... it was fascinating yet scary to watch them in action. She is in good hands and was where she needed to be.. If she had been on the floor it would have been much worse. Dr. Allen called later this evening from home to check on her. That says a lot to me, it shows he cares and for that I am grateful.
Her blood gases were bad. Her oxygen could not reach her tissues. She received a blood transfusion to help with that and to also help with her hemoglobin. She was put back on 3 meds to help her heart. Blood pressure, blood thinner, and one to help with profusion to her viens.
She is also back on the vent but just by mask. If she doesn't calm down and sleep they will have to use the tube so they can sedate her. She does not like the mask. She is really mad and fighting it which makes her breath really hard. You can see her chest cavity at times and her respiratory rate is high. If she does not clam down then they will not hesitate to use the tube.
What happened? I know, we thought she was doing wonderful and ready to move forward. She was not. They say they like to push the babies hard so we can get home.. so they move fast when babies are tolerating the changes. Hannah was doing great but she got tired and her heart just isn't ready to do it alone. She tried :) Her heart is fixed but as you can imagine it is still weak from open heart surgery and then having to reverse the way it once worked. The healing process will take up to 6 months.
We called the church for some help. The missionaries showed up to assist with a blessing of health. It was amazing. It offered Ricky and I some much needed reassurance and comfort. I am reminded everyday of the power of the Saviors atonement for us when I look at my sweet baby girl. It is so hard to watch my baby struggle and hurt, I can't even comprehend the pain the Savior faced and how Heavenly Father felt. What an amazing sacrifice on both parts and all because of love! Love is a powerful emotion and without it where would we be as individuals? I know I would be a lost bitter person for sure.
I am a better person because of the gospel. I can find happiness in this time of affliction because Heavenly Father gives me strength, comfort, and peace through the gift of the Holy Ghost.
I have faith that Hannah will get better soon and that her body will do what it needs to when she is ready, not when the doctors say so.
Love,
Sam
Hannah had orders to go to the floor today.
She did not make it to the floor. Her numbers were telling us she was having trouble but the nurse on hand was not paying attention. We feel the situation could have been handled better had the nurse been more attentive. This is not all on the nurse, we as parents should have gone to the charge nurse sooner. Maybe her nurse was having an off day. It happens. I just don't like it when that day is on my daughters watch.
Hannah got cold all of a sudden and it was literally about 10 minutes and we had like 12 people in our room. Her surgeon Dr. Lofin so happened to be in the PICU when she did her spell and he said she was not to leave the PICU. Dr. Allen took charge and did what was needed to be done once he was informed there was a problem. (We requested to have him take a look at Hannah). They worked fast... it was fascinating yet scary to watch them in action. She is in good hands and was where she needed to be.. If she had been on the floor it would have been much worse. Dr. Allen called later this evening from home to check on her. That says a lot to me, it shows he cares and for that I am grateful.
Her blood gases were bad. Her oxygen could not reach her tissues. She received a blood transfusion to help with that and to also help with her hemoglobin. She was put back on 3 meds to help her heart. Blood pressure, blood thinner, and one to help with profusion to her viens.
She is also back on the vent but just by mask. If she doesn't calm down and sleep they will have to use the tube so they can sedate her. She does not like the mask. She is really mad and fighting it which makes her breath really hard. You can see her chest cavity at times and her respiratory rate is high. If she does not clam down then they will not hesitate to use the tube.
What happened? I know, we thought she was doing wonderful and ready to move forward. She was not. They say they like to push the babies hard so we can get home.. so they move fast when babies are tolerating the changes. Hannah was doing great but she got tired and her heart just isn't ready to do it alone. She tried :) Her heart is fixed but as you can imagine it is still weak from open heart surgery and then having to reverse the way it once worked. The healing process will take up to 6 months.
We called the church for some help. The missionaries showed up to assist with a blessing of health. It was amazing. It offered Ricky and I some much needed reassurance and comfort. I am reminded everyday of the power of the Saviors atonement for us when I look at my sweet baby girl. It is so hard to watch my baby struggle and hurt, I can't even comprehend the pain the Savior faced and how Heavenly Father felt. What an amazing sacrifice on both parts and all because of love! Love is a powerful emotion and without it where would we be as individuals? I know I would be a lost bitter person for sure.
I am a better person because of the gospel. I can find happiness in this time of affliction because Heavenly Father gives me strength, comfort, and peace through the gift of the Holy Ghost.
I have faith that Hannah will get better soon and that her body will do what it needs to when she is ready, not when the doctors say so.
Love,
Sam
Wednesday, October 21, 2009
Flood of Emotions Day 7
Today started out with a bang for me. I woke up and got ready for the day, as Rick and I were leaving the room the phone rang. It was the nurse calling to inform us that Hannah was moved to a shared room so that another baby could have a room with isolation. I just started to cry. Before I begin I would like to make note that I know my thoughts and feelings were selfish and that I was crying for really no reason at all. I would also like to add that I haven't cried through this entire process and I think what happened this morning broke the camels back and I was due for a good cry. I am tired emotionally and physically. I just want to go home and be with my kiddos and Ricky.
Okay, so we get to the hospital and I am upset because my baby is now in a room with another little kid and I don't think this is okay. Her chest was just closed yesterday and I do not want her to get sick. I do not want another person I don't know in the room with my baby. She is still fragile. Then I felt bad for feeling this way. I know that every baby and child in the PICU is in here for reason, I know that my baby is not the first to share a room, I know that this all sounds really silly and selfish. I am also at the same time sad for this other baby in the room because for some reason unknown to us her mom is not allowed to visit or is on restrictions to visit. So my emotions are mixed. I then had another mother and a nurse tell me it is okay to feel this way, Hannah is my baby and my first priority and so naturally I would feel this way about sharing rooms. I cried for 2 hours. I am done crying now and good to go :) I still feel the same way about this situation but it is what it is and I'm dealing.
We then go to a nearby mall for lunch. We needed a breather. While we were at the mall we stopped into a department store and one of the sales girls congratulated me on being pregnant. I didn't know what to say so I said thank you. I wasn't upset... it is to be expected, I am swollen from stress and did just have a baby one month ago but after this morning it really didn't help me feel better. I could look at it as a compliment... at least she thought I was pregnant and not overweight :) I can always count on Rick to make me feel amazing. As we were walking back to the hospital he twirled me around looked in my eyes, told me I was beautiful and gave me the sweetest kiss :0 It reminded me of something you only see in movies!
Happy moments: They started weaning Hannah from the breathing tube today and as of 7pm she is done! They took it out and she is breathing on her own! What now? She has 3 more meds to come off of and feedings to work on. We are going to try nursing so wish us luck! One step at a time. Hannah calls the shots as of now... it all depends on how her body responds and so far she is doing great! We will still be in the hospital for another week but we are one day closer to going home!
What a sweeter peters :)
Okay, so we get to the hospital and I am upset because my baby is now in a room with another little kid and I don't think this is okay. Her chest was just closed yesterday and I do not want her to get sick. I do not want another person I don't know in the room with my baby. She is still fragile. Then I felt bad for feeling this way. I know that every baby and child in the PICU is in here for reason, I know that my baby is not the first to share a room, I know that this all sounds really silly and selfish. I am also at the same time sad for this other baby in the room because for some reason unknown to us her mom is not allowed to visit or is on restrictions to visit. So my emotions are mixed. I then had another mother and a nurse tell me it is okay to feel this way, Hannah is my baby and my first priority and so naturally I would feel this way about sharing rooms. I cried for 2 hours. I am done crying now and good to go :) I still feel the same way about this situation but it is what it is and I'm dealing.
We then go to a nearby mall for lunch. We needed a breather. While we were at the mall we stopped into a department store and one of the sales girls congratulated me on being pregnant. I didn't know what to say so I said thank you. I wasn't upset... it is to be expected, I am swollen from stress and did just have a baby one month ago but after this morning it really didn't help me feel better. I could look at it as a compliment... at least she thought I was pregnant and not overweight :) I can always count on Rick to make me feel amazing. As we were walking back to the hospital he twirled me around looked in my eyes, told me I was beautiful and gave me the sweetest kiss :0 It reminded me of something you only see in movies!
Happy moments: They started weaning Hannah from the breathing tube today and as of 7pm she is done! They took it out and she is breathing on her own! What now? She has 3 more meds to come off of and feedings to work on. We are going to try nursing so wish us luck! One step at a time. Hannah calls the shots as of now... it all depends on how her body responds and so far she is doing great! We will still be in the hospital for another week but we are one day closer to going home!
Before
After
What a sweeter peters :)Tuesday, October 20, 2009
One Step Closer Day 6
Hannah's chest is closed! Yay! We are one step closer to the end :) They took her pace maker out so she is using her own heart. Her rhythm is not normal but she is tolerating it and should fall back to a normal rate in few days when the swelling and iritation goes down. She is waking up slowly and should be off the breathing tube tomorrow. Hopefully we will be on the floor by the weekend. She is doing good :)
I am so excited for the day I get to hold my sweets again! It is so hard as a mother to just watch your baby lie on bed and not be able to hold her. The only thing I can do to offer comfort is put my hand on her face and talk to her.
Hannah is 6 weeks old today and I feel like we have been in a whirlwind of a storm. We have missed out on so much but also have come so far in this short amount of time. She is a blessing to our family. I can't wait to get her home so she can start to coo and make those sweet baby noises. She will do great!
If we get to go home next week then my little man Caleb can come home as well. I miss him. He is such a cute stinker, I call him my doodlebug :) I keep picturing what it will be like to see him, will he come running to me with excitement and open arms or will he be mad at me for leaving him? He is an amazing little boy as well. His whole world has been turned upside down when Hannah was in the NICUand then just as things were getting back to normal we start all over again.
Once we get home it should be a long while before we have to this again. They will wait to do her nose surgery until she is a little older. Hannah's heart should be as close to normal as it can get. It will take her heart and little body at least 6 months to fully recover.
We still have to make sure she does not get sick due to the fact that her body will be healing from open heart surgery and also because of her cohanal atresia (blockage in the nasal passage). She will be home bound for the flu season.... bring on the movies, lazy clothes, and hot chocolate! We will be working on getting her to nurse and to be a healthy weight so we can get rid of the G-Tube. I will not be sad to see it go. The goal is December 15th when she has her 3 month check up with the surgeon that put the G-Tube in.
I love being a mom. It is not always easy but it is always worth my while! There is nothing more satisfying than taking care of these sweet children entrusted to me by Heavenly Father. They are truly a little piece of heaven.
Love,
Sam
I am so excited for the day I get to hold my sweets again! It is so hard as a mother to just watch your baby lie on bed and not be able to hold her. The only thing I can do to offer comfort is put my hand on her face and talk to her.
Hannah is 6 weeks old today and I feel like we have been in a whirlwind of a storm. We have missed out on so much but also have come so far in this short amount of time. She is a blessing to our family. I can't wait to get her home so she can start to coo and make those sweet baby noises. She will do great!
If we get to go home next week then my little man Caleb can come home as well. I miss him. He is such a cute stinker, I call him my doodlebug :) I keep picturing what it will be like to see him, will he come running to me with excitement and open arms or will he be mad at me for leaving him? He is an amazing little boy as well. His whole world has been turned upside down when Hannah was in the NICUand then just as things were getting back to normal we start all over again.
Once we get home it should be a long while before we have to this again. They will wait to do her nose surgery until she is a little older. Hannah's heart should be as close to normal as it can get. It will take her heart and little body at least 6 months to fully recover.
We still have to make sure she does not get sick due to the fact that her body will be healing from open heart surgery and also because of her cohanal atresia (blockage in the nasal passage). She will be home bound for the flu season.... bring on the movies, lazy clothes, and hot chocolate! We will be working on getting her to nurse and to be a healthy weight so we can get rid of the G-Tube. I will not be sad to see it go. The goal is December 15th when she has her 3 month check up with the surgeon that put the G-Tube in.
I love being a mom. It is not always easy but it is always worth my while! There is nothing more satisfying than taking care of these sweet children entrusted to me by Heavenly Father. They are truly a little piece of heaven.
Love,
Sam
Monday, October 19, 2009
Update Day 5
Dr. Lofin stopped by this morning and said that he was going to shoot for tomorrow (Tuesday) to close her chest up. They are slowly weaning her from her meds. Her heart is trying to go faster than the pace maker which is making her blood pressure levels low. They may have to adjust a few things but for now she is tolerating it . She continues to be a trooper! What an angel to be so small and to endure all of this!
Caleb continues to have fun with Grandma Teed. He can be a little mischievous at times like coloring on her couch with marker (washable), pushing a chair up by the stove and throwing all the cooking utensils on the floor , and locking the t.v. room door when no one is in there :) He is so cute!
Caleb continues to have fun with Grandma Teed. He can be a little mischievous at times like coloring on her couch with marker (washable), pushing a chair up by the stove and throwing all the cooking utensils on the floor , and locking the t.v. room door when no one is in there :) He is so cute!
Sunday, October 18, 2009
Post Surgery Day 4
Hannah is true girl at heart! She sure knows how to take her time and she is not hurrying for anyone's sake :) Hannah is doing really well. She started to pee so the fluids she is putting out are now greater than what they are putting in her body, this is a good thing. Most heart surgeries they close the chest 2 days later, with our little miss they are going to try and close the chest Monday morning(5 days later). We have seen her heart go into its natural rhythm and override the pace maker. When all the swelling goes down her heart should take over completely.
So we are just waiting... we won't be out of the PICU until Thursday or Friday and then we will be up on the floor for another 4 days. So by the time we get to go home we are looking at a 3 week stay in the hospital. The doctors had said worse case scenario 2 weeks but unlikely... our Hannah is proving to be consistent with giving the medical field a run for their statistics :)
All our Love,
Ricky & Sam
So we are just waiting... we won't be out of the PICU until Thursday or Friday and then we will be up on the floor for another 4 days. So by the time we get to go home we are looking at a 3 week stay in the hospital. The doctors had said worse case scenario 2 weeks but unlikely... our Hannah is proving to be consistent with giving the medical field a run for their statistics :)
All our Love,
Ricky & Sam
Friday, October 16, 2009
Pictures
We didn't want Hannah to go into surgery with out her baby blessing and family pictures, so here are some pics of her blessing and our ad lib family photos in the hospital room :)
Update
We are in day 2 of post surgery. Hannah is doing well. She is having some problems but taking it step by step. She is really swollen and holding onto lots of fluids so her chest will remain open for a few more days. This means we will be in the PICU through the weekend and maybe into some of next week which means we are looking at a 3 weeks in the hospital. She finally stared peeing which is good thing. Her white blood count was up to 30,000 so they gave her some antibiotics and it is
now down to 18,000. (normal is 10,000)
She is doing good though. She is amazing! Rick and I are hanging out and getting to spend a lot of one on one time together. We read, blog, watch TV, play chess, and talk while we wait with our little miss in the PICU.
Caleb is having fun with Grandma and Grandpa Teed in Iowa. I sure do miss my little boy!
Love,
Sam
now down to 18,000. (normal is 10,000)
She is doing good though. She is amazing! Rick and I are hanging out and getting to spend a lot of one on one time together. We read, blog, watch TV, play chess, and talk while we wait with our little miss in the PICU.
Caleb is having fun with Grandma and Grandpa Teed in Iowa. I sure do miss my little boy!
Love,
Sam
Thursday, October 15, 2009
A day in the hospital...
Cuddling with Hannah
One long day of surgery
What a cute kid!
Our beautiful princess
Snack timeWhat a day! Hannah and her heart surgery...
What a day! Yesterday was quite the experience for us. We woke up at 3:30 in the morning, mainly because both of us were sleeping on the same twin bed in Hannah's hospital room. Not the most comfortable set up :) We stayed up so we could hold our little princess before they took her away for her heart surgery. We wont be able to hold her for about 3-5days.
Dr. Gary Loflin performed the surgery. We found out through a friend of ours who's son also had heart surgery here that Dr. Loflin is one of the top heart surgeons in the nation. What a peace of mind that gave us to know she was in good hands! Hannah was supposed to be his second patient of the day but due to illness the patient ahead of us had to cancel and we were bumped to first surgery of the day and she also ended up being his only patient for the day... which is odd since they are usually booked. It is also odd that they had an opening in the schedule and there usually aren't openings like that. We feel the divine hand our Heavenly Father intervened. Hannah would not have made it much longer than a few weeks. She was going into heart failure.
The doctors were in the room shortly after 7:00 am to take little Hannah away. Dr. Loflin said that the operation would take about 2 and 1/2 hours. Due to the preparation time they didn't make the first incision until about 8:45 am. Less than one hour after they had begun the nurse practitioner that was following Hannah came out and informed us that they had closed the aorta pulmonary window (AP window) the second heart defect that they had discovered. This defect was much more serious than what they had originally thought and that is why she had to have this operation so soon.
By the time the they got done it was about 1-1:30. It took a little longer than planned. Dr. Lofin came down to talk with us and said the TET repair was more tedious and difficult than normal TET babies due to her anatomy. (she has bilateral superior vena cavae... which is fine it just made it harder to repair. This is when there are two veins dumping the blood from above her heart into her heart. Most people only have one but she has two). So Hannah is proving to already be mischievous :)
They took her to the PICU and we got to go in and see her around 2:15 pm. She looked like they said she would. She was doing good.. her heart rate was having trouble staying in rhythm like It should be so they were watching that( normal after a surgery), and then they were watching some bleeding she was having out her chest tube. We went outside to get some fresh air, take a breather, and make a few phone calls. While I was talking to my mom the PICU called to tell us they were taking her back to the operating room due to the bleeding. They fixed the bleeding and also put in a temporary pace maker. That was at 3pm. It was 6pm by the time we got to see her again.
Hannah is doing good. At the moment she has about 10 different machines doing the work for her. This is to allow healing. She is on a breathing tube and will be for a couple of days, due to how swollen she is they wont close her chest for a few days, she has a pace maker for her heart rhythm but the doctor said this is typical and once all the swelling goes down her heart should start working the correct way.... if not then she will have to use a permanent pace maker but this is very unlikely. She has had some problems with her blood pressure today but they are watching her close and doing what they need to do. She is in really good hands.
The hardest part is over but she still needs to prove her body can work on its own and this process takes about 3-5days. Once she comes off all the machines they will move her out of PICU to the post op floor for another 4-days. We will be in the hospital for about 2 weeks. For this week Rick and I are staying in the Ronald McDonald house across the street. He will go back to work on Monday and I will stay in the room with Hannah once she goes to the floor.
So we are working our way through the first and hardest hurdle by far. She still has a few other surgeries to be done in the future regarding her nose and her hand and hopefully they can do them at the same time rather than putting her to sleep twice. She shouldn't need another heart surgery until she is a teenager. That surgery would be to fix the pulmonary valve that allows blood in. It is supposed to be a one way door that lets blood in but Hannah's is littler than normal and will leak a little bit. They say it can leak for up to a decade and be fine. When they do fix it they will most likely put a shunt in. This is as long as Hannah does what the medical research shows. They will of course always be watching her closely.
So how do we feel: We talked about it last night and it is so hard to explain. One reason is because we feel like we should be frantic but we don't. We still feel that amazing sense of peace and comfort. It does feel like we are having an out of body experience... we know our 1 month old baby just had heart surgery but yet it is so surreal. Kind of like that feeling you have when you wonder if you are dreaming.. is this real? Yes it is real, our daughter did indeed have open heart surgery. For as strange as we feel we also feel so much peace. We also feel like we have been hit by a bus due to the lack of sleep we had and having a long and stressful day yesterday. We got up at 3:30am and went to bed at 11pm.
We are cheering our little girl on and once she wakes up and gets to the floor she has made it through the iffy stage. She is a trooper and has been from her birth... she can do it! She is strong and oh so beautiful! We have all the hope in the world for her :) We will keep updates coming as they happen! Thank you all again for the love and support offered, it has deeply touched our family!
With Love,
Ricky and Sam
Dr. Gary Loflin performed the surgery. We found out through a friend of ours who's son also had heart surgery here that Dr. Loflin is one of the top heart surgeons in the nation. What a peace of mind that gave us to know she was in good hands! Hannah was supposed to be his second patient of the day but due to illness the patient ahead of us had to cancel and we were bumped to first surgery of the day and she also ended up being his only patient for the day... which is odd since they are usually booked. It is also odd that they had an opening in the schedule and there usually aren't openings like that. We feel the divine hand our Heavenly Father intervened. Hannah would not have made it much longer than a few weeks. She was going into heart failure.
The doctors were in the room shortly after 7:00 am to take little Hannah away. Dr. Loflin said that the operation would take about 2 and 1/2 hours. Due to the preparation time they didn't make the first incision until about 8:45 am. Less than one hour after they had begun the nurse practitioner that was following Hannah came out and informed us that they had closed the aorta pulmonary window (AP window) the second heart defect that they had discovered. This defect was much more serious than what they had originally thought and that is why she had to have this operation so soon.
By the time the they got done it was about 1-1:30. It took a little longer than planned. Dr. Lofin came down to talk with us and said the TET repair was more tedious and difficult than normal TET babies due to her anatomy. (she has bilateral superior vena cavae... which is fine it just made it harder to repair. This is when there are two veins dumping the blood from above her heart into her heart. Most people only have one but she has two). So Hannah is proving to already be mischievous :)
They took her to the PICU and we got to go in and see her around 2:15 pm. She looked like they said she would. She was doing good.. her heart rate was having trouble staying in rhythm like It should be so they were watching that( normal after a surgery), and then they were watching some bleeding she was having out her chest tube. We went outside to get some fresh air, take a breather, and make a few phone calls. While I was talking to my mom the PICU called to tell us they were taking her back to the operating room due to the bleeding. They fixed the bleeding and also put in a temporary pace maker. That was at 3pm. It was 6pm by the time we got to see her again.
Hannah is doing good. At the moment she has about 10 different machines doing the work for her. This is to allow healing. She is on a breathing tube and will be for a couple of days, due to how swollen she is they wont close her chest for a few days, she has a pace maker for her heart rhythm but the doctor said this is typical and once all the swelling goes down her heart should start working the correct way.... if not then she will have to use a permanent pace maker but this is very unlikely. She has had some problems with her blood pressure today but they are watching her close and doing what they need to do. She is in really good hands.
The hardest part is over but she still needs to prove her body can work on its own and this process takes about 3-5days. Once she comes off all the machines they will move her out of PICU to the post op floor for another 4-days. We will be in the hospital for about 2 weeks. For this week Rick and I are staying in the Ronald McDonald house across the street. He will go back to work on Monday and I will stay in the room with Hannah once she goes to the floor.
So we are working our way through the first and hardest hurdle by far. She still has a few other surgeries to be done in the future regarding her nose and her hand and hopefully they can do them at the same time rather than putting her to sleep twice. She shouldn't need another heart surgery until she is a teenager. That surgery would be to fix the pulmonary valve that allows blood in. It is supposed to be a one way door that lets blood in but Hannah's is littler than normal and will leak a little bit. They say it can leak for up to a decade and be fine. When they do fix it they will most likely put a shunt in. This is as long as Hannah does what the medical research shows. They will of course always be watching her closely.
So how do we feel: We talked about it last night and it is so hard to explain. One reason is because we feel like we should be frantic but we don't. We still feel that amazing sense of peace and comfort. It does feel like we are having an out of body experience... we know our 1 month old baby just had heart surgery but yet it is so surreal. Kind of like that feeling you have when you wonder if you are dreaming.. is this real? Yes it is real, our daughter did indeed have open heart surgery. For as strange as we feel we also feel so much peace. We also feel like we have been hit by a bus due to the lack of sleep we had and having a long and stressful day yesterday. We got up at 3:30am and went to bed at 11pm.
We are cheering our little girl on and once she wakes up and gets to the floor she has made it through the iffy stage. She is a trooper and has been from her birth... she can do it! She is strong and oh so beautiful! We have all the hope in the world for her :) We will keep updates coming as they happen! Thank you all again for the love and support offered, it has deeply touched our family!
With Love,
Ricky and Sam
Wednesday, October 14, 2009
Heart Surgery Update
It's 11pm and Hannah has been out of surgery since 6pm. She is doing as well as a baby can do after an open heart surgery, which is great. We're tired and we will share the details about the day after we get some sleep.
Thank you for all of your prayers!
Love,
Ricky and Sam
Thank you for all of your prayers!
Love,
Ricky and Sam
Tuesday, October 13, 2009
The wait begins
Tonight has been a great night so far in terms as spiritual. We did not want to send our Hannah into surgery without her baby blessing. Ricky, Grandpa Teed, and three of our friends from our ward came and assisted in the blessing. It was beautiful and so full of hope and many great things that the future could hold for Hannah.
She looked so pretty. Grandma Teed brought a dress she made for her second girl but she never had another girl just boys. I am so grateful and honored that she would let us use it. We also did some ad lib family photos in the hospital room. We will post the pictures in a few days. ( I left the cord at home... oops)
Hannah is going in for surgery at 7am. By the time everything gets going and finishes we are looking at a 5-6 hour wait before we will see her again. We were told what to expect during and after the procedure.
This is still surreal to me. This is not like the excited anxious feeling one gets before Christmas as a kid, ones wedding day, before the birth of a child. Instead I am not sure how I feel. A little scared, nervous.... It hasn't quit hit me yet... I am sure it will in the morning.
What we were told to expect: Hannah will be swollen and on many machines for a few days. They will keep her asleep for at least 2 days maybe longer and heavily sedated for at least 4-5 more days so that her body can heal and be well rested. We will just get to sit back and watch. She will not be eating for 4 days and I will not be able to hold her again until she is up on the floor. That could be a week. Keeping our fingers and toes crossed that she will heal fast :)
My other hurdle: Caleb is going back to Muscatine with Grandma and Grandpa Teed for at least a week maybe a little longer so that I can be here with Hannah. How am to go that long without seeing him? What if he thinks I forgot about him? What happens when he gets sad and wants his mom? I know grandma is going to take care of him but this is a long time to be away from my little man and its 6 hours away. I hope we both do okay. I hope he will be having so much fun that he wont miss me. We can only hope :)
Is 10 pm and the wait begins. So what to do while we wait? We hold Hannah as much as possible and give her all the loves we have to offer. We will try to get some sleep but can't promise anything.
We are comforted and full of peace at this time. We know that Hannah is a daughter of God and that He will be with her tomorrow and has been with her this entire time. We know that He loves her and loves us. We know this gospel to be true and no matter what happens we find great comfort in the knowledge that families are forever and all because we have a loving Heavenly Father and Savior... all because Jesus gave his life so we may have eternal life.
With love,
Sam
She looked so pretty. Grandma Teed brought a dress she made for her second girl but she never had another girl just boys. I am so grateful and honored that she would let us use it. We also did some ad lib family photos in the hospital room. We will post the pictures in a few days. ( I left the cord at home... oops)
Hannah is going in for surgery at 7am. By the time everything gets going and finishes we are looking at a 5-6 hour wait before we will see her again. We were told what to expect during and after the procedure.
This is still surreal to me. This is not like the excited anxious feeling one gets before Christmas as a kid, ones wedding day, before the birth of a child. Instead I am not sure how I feel. A little scared, nervous.... It hasn't quit hit me yet... I am sure it will in the morning.
What we were told to expect: Hannah will be swollen and on many machines for a few days. They will keep her asleep for at least 2 days maybe longer and heavily sedated for at least 4-5 more days so that her body can heal and be well rested. We will just get to sit back and watch. She will not be eating for 4 days and I will not be able to hold her again until she is up on the floor. That could be a week. Keeping our fingers and toes crossed that she will heal fast :)
My other hurdle: Caleb is going back to Muscatine with Grandma and Grandpa Teed for at least a week maybe a little longer so that I can be here with Hannah. How am to go that long without seeing him? What if he thinks I forgot about him? What happens when he gets sad and wants his mom? I know grandma is going to take care of him but this is a long time to be away from my little man and its 6 hours away. I hope we both do okay. I hope he will be having so much fun that he wont miss me. We can only hope :)
Is 10 pm and the wait begins. So what to do while we wait? We hold Hannah as much as possible and give her all the loves we have to offer. We will try to get some sleep but can't promise anything.
We are comforted and full of peace at this time. We know that Hannah is a daughter of God and that He will be with her tomorrow and has been with her this entire time. We know that He loves her and loves us. We know this gospel to be true and no matter what happens we find great comfort in the knowledge that families are forever and all because we have a loving Heavenly Father and Savior... all because Jesus gave his life so we may have eternal life.
With love,
Sam
Monday, October 12, 2009
Heart Surgery
The verdict is in. The cardiologists meant with the surgeons and they all agreed that Hannah needed to have her surgery soon. The day is this Wednesday the 14th.
I am so full of emotion at the moment and feel scatter brained. She will be on a ventilator and in the PICU for 3-4 days and then in post op for another 3-4 days... so worst case scenario (unless something goes really wrong) she will be in the hospital post op for about 2 weeks.
I am not sure where we had our information from but the surgery its self should take no longer than 4 hours. They don't even like keeping babies under for that long.
At this moment that is what I have for you all as far as updates go. I don't know what else to say.... my emotions are all over the place. I am grateful that this is happening since she needs it... and this is what I wanted... at least that's what I thought. At the same time I am feeling nervous and a little scared and when Wednesday comes I am sure I will have an entire new wave of emotions to battle with.
I know it is going to be okay... I have had a feeling of peace and comfort from the time Hannah was born.
We will keep the updates coming as needed.
Love,
Sam
I am so full of emotion at the moment and feel scatter brained. She will be on a ventilator and in the PICU for 3-4 days and then in post op for another 3-4 days... so worst case scenario (unless something goes really wrong) she will be in the hospital post op for about 2 weeks.
I am not sure where we had our information from but the surgery its self should take no longer than 4 hours. They don't even like keeping babies under for that long.
At this moment that is what I have for you all as far as updates go. I don't know what else to say.... my emotions are all over the place. I am grateful that this is happening since she needs it... and this is what I wanted... at least that's what I thought. At the same time I am feeling nervous and a little scared and when Wednesday comes I am sure I will have an entire new wave of emotions to battle with.
I know it is going to be okay... I have had a feeling of peace and comfort from the time Hannah was born.
We will keep the updates coming as needed.
Love,
Sam
Saturday, October 10, 2009
Update on Hannah
It is Sunday night and we are still in the hospital. Hannah came in for a routine procedure and while under observation started showing signs of a fever. Her fever had broke but by 11:30pm she had developed another fever. Things went from bad to worse.
She struggled all through the night and into the next early afternoon. She was going into respiratory failure. They transferred her down to the PICU in case they needed to put a breathing tube in. Our Hannah is a trooper and did well enough that she ended up not needing one. One might ask what would cause this? There are several factors ......
It could be because she is going into heart failure more quickly due to the aortapulmonary window in her heart or .....
she had a rough day with the heart cath (goes up through the groin to the heart and is invasive), spinal tap, urine cath for samples, they poked her 10 times to try and get an Ivy in and take blood for tests (none of which were successful and 8 of which ended up in blown veins), she had a breathing tube down her throat while she was sedated so I imagine her throat would be sore, her nose was clogged up form all the crying, she developed a fever..... she started breathing really hard and was only getting maybe 5-10 minutes of rest in between being distressed.... so conclusion she became exhausted. Hannah already has to work extra hard to breath and to do everything else and then when you throw all of the other stuff into the picture of course it is only natural for her body to respond by going into Respiratory Failure.
She came up from the PICU today and is doing way better. They added 2 new meds to slow down her body from going into heart failure. The cardiologists and surgeons are meeting tomorrow rather than Friday to discuss Hannah's case. This leads me to believe that they are wanting to do something soon so this does not happen again. If she were to get sick it could be way worse than it was this weekend. We will know more of what they are planning for Hannah tomorrow.
She has slept all day and is improving.... she came off her antibiotics around 10pm tonight which means she does not have any viral or bacterial infections. I will keep everyone up to date as I learn things.
So for now Hannah an I will be at Children's Mercy for the next 3-4 days unless they have a different plan for Hannah and we will see what that is in the morning. Her nurse tonight is amazing and we hope we see her back tomorrow. You can tell she really cares for her patients and loves her job and for that I am grateful :)
Love,
Sam
She struggled all through the night and into the next early afternoon. She was going into respiratory failure. They transferred her down to the PICU in case they needed to put a breathing tube in. Our Hannah is a trooper and did well enough that she ended up not needing one. One might ask what would cause this? There are several factors ......
It could be because she is going into heart failure more quickly due to the aortapulmonary window in her heart or .....
she had a rough day with the heart cath (goes up through the groin to the heart and is invasive), spinal tap, urine cath for samples, they poked her 10 times to try and get an Ivy in and take blood for tests (none of which were successful and 8 of which ended up in blown veins), she had a breathing tube down her throat while she was sedated so I imagine her throat would be sore, her nose was clogged up form all the crying, she developed a fever..... she started breathing really hard and was only getting maybe 5-10 minutes of rest in between being distressed.... so conclusion she became exhausted. Hannah already has to work extra hard to breath and to do everything else and then when you throw all of the other stuff into the picture of course it is only natural for her body to respond by going into Respiratory Failure.
She came up from the PICU today and is doing way better. They added 2 new meds to slow down her body from going into heart failure. The cardiologists and surgeons are meeting tomorrow rather than Friday to discuss Hannah's case. This leads me to believe that they are wanting to do something soon so this does not happen again. If she were to get sick it could be way worse than it was this weekend. We will know more of what they are planning for Hannah tomorrow.
She has slept all day and is improving.... she came off her antibiotics around 10pm tonight which means she does not have any viral or bacterial infections. I will keep everyone up to date as I learn things.
So for now Hannah an I will be at Children's Mercy for the next 3-4 days unless they have a different plan for Hannah and we will see what that is in the morning. Her nurse tonight is amazing and we hope we see her back tomorrow. You can tell she really cares for her patients and loves her job and for that I am grateful :)
Love,
Sam
Friday, October 9, 2009
Hannah had her heart cath today to see exactly what was going on. What they found.... They found that Hannah's condition is more serious and needs attention soon. They are thinking before Thanksgiving but we will not know for sure until the 16th. The hole in her heart is bigger than they originally thought and there is so much blood flow to the lungs that they can't even measure it.
Hannah is already showing signs of heart failure which in most tertrology of fallout babies(tet babies) they don't show signs of t until later down the road... the hole in her heart is causing the process to move much faster. Dr. Carlson (cardiologist) will meet with the surgeons and other team members on the 16th and we should have a date by then. She is campaigning for November.
Hannah did really good until about 3pm and then she started getting a fever and as time went on it got worse rather than better. She was supposed to get discharged at 5pm. That did not happen. It is 11:30pm and I am sitting in a hospital room (yet again) with my 4 week old. Her fever has broke and they took all sorts of tests. When the cardiologist comes in for rounds tomorrow morning we should know more and how long they plan on keeping her. They say 2 days is standard procedure for babies that get a fever and are under 60 days of age... we will see ;)
Ricky and Caleb came to visit for a while and then went home to get some rest. That is the hardest part of this entire situation. I have two children and both need me. How do you choose? It is the worst feeling... I feel horrible. I want to go home with Caleb, sleep in my own bed, and get some rest but then I feel like I am being selfish... I should of course stay with my baby who is in the hospital. So that's what I did, I chose to stay with Hannah and Ricky went home with Caleb. It is so hard as a mom to do that. I just have to remind myself that Ricky is here with me and we can work as a team. We can do this... one day at time. At least that is what I keep telling myself, but sometimes I can't help but feeling a little unsure. So at times I am not as strong as I would like to be.
When Hannah goes in for her heart surgery they say it can take up to 14 hours and then at least 3-5 days in the PICU for recovery. What in the world am I going to do for 14 hours in a waiting room? One thing for sure is I know the gospel is true, that Jesus lives and loves me, that my Heavenly Father is a loving God, and that families can be together forever.
I have an amazing husband.. he is my best friend, he holds me and comforts me when I am sad. He is a strong man and works hard to provide for his family. Caleb is wonderful and has such a sweet spirit, Hannah is our super trooper. I am surrounded by many friends and family who would help with a moments notice. Thank you!
With love,
Sam
Hannah is already showing signs of heart failure which in most tertrology of fallout babies(tet babies) they don't show signs of t until later down the road... the hole in her heart is causing the process to move much faster. Dr. Carlson (cardiologist) will meet with the surgeons and other team members on the 16th and we should have a date by then. She is campaigning for November.
Hannah did really good until about 3pm and then she started getting a fever and as time went on it got worse rather than better. She was supposed to get discharged at 5pm. That did not happen. It is 11:30pm and I am sitting in a hospital room (yet again) with my 4 week old. Her fever has broke and they took all sorts of tests. When the cardiologist comes in for rounds tomorrow morning we should know more and how long they plan on keeping her. They say 2 days is standard procedure for babies that get a fever and are under 60 days of age... we will see ;)
Ricky and Caleb came to visit for a while and then went home to get some rest. That is the hardest part of this entire situation. I have two children and both need me. How do you choose? It is the worst feeling... I feel horrible. I want to go home with Caleb, sleep in my own bed, and get some rest but then I feel like I am being selfish... I should of course stay with my baby who is in the hospital. So that's what I did, I chose to stay with Hannah and Ricky went home with Caleb. It is so hard as a mom to do that. I just have to remind myself that Ricky is here with me and we can work as a team. We can do this... one day at time. At least that is what I keep telling myself, but sometimes I can't help but feeling a little unsure. So at times I am not as strong as I would like to be.
When Hannah goes in for her heart surgery they say it can take up to 14 hours and then at least 3-5 days in the PICU for recovery. What in the world am I going to do for 14 hours in a waiting room? One thing for sure is I know the gospel is true, that Jesus lives and loves me, that my Heavenly Father is a loving God, and that families can be together forever.
I have an amazing husband.. he is my best friend, he holds me and comforts me when I am sad. He is a strong man and works hard to provide for his family. Caleb is wonderful and has such a sweet spirit, Hannah is our super trooper. I am surrounded by many friends and family who would help with a moments notice. Thank you!
With love,
Sam
Thursday, October 8, 2009
Some thoughts
Hannah is 4 weeks today. Wow! There has been so much going on and where has the time gone? We spent our first 2 weeks in the NICU and the last 2 weeks enjoying being together. So what is our new normal? I have a new baby but yet I don't. Let me explain.... Hannah has a home nurse that comes for 5 hours a day. In the time that Sarah (the nurse) is here it is my job to let her take care of Hannah while I run errands, take Caleb to play groups, spend one on one time with Caleb, and clean my house. How strange is this? It is hard for me. Hannah is home bound so the only time we get to go out with her to the hospitals for her many appointments (where all the sick people go).
We do not get to go out as a family... we get to go out with Caleb (which is wonderful) while Hannah stays home with her nurse. So as hard as it is, it is also a blessing otherwise we would never leave the house. We have to be very careful not be exposed to illness.
We will have a weekend nurse starting on Saturday and I am excited and ready to go back to church.
At times I cry because I am normal and if given a chance to really dwell on things the negatives and ugly what ifs rear their head in my direction. So what do I do to make these doubts go away? Pray morning and night and when I start to feel sad, I have learned to take one day at time, to be thankful for each day we are blessed with, to be positive with every new challenge, and to focus on the now... the future will come sooner than we expect.
How easy it is to take for granted the simple joys of life that seem so mundane until you lose them. For all the moms out there... enjoy nursing even if it seems tedious at times, enjoy giving baths, enjoy the cuddles, and cherish the noise of a healthy cry. I miss nursing and the bond that comes with it. When my baby cries it is soft and weak because it is hard work for her heart. Hannah at times due to her heart just wants to be put down and left alone. She is getting better. The simple every day things that defines being a mom to a healthy baby really are joyful even if they seem boring or not so fun at the time. I miss them.
Hannah is an amazing daughter of God! She has already brought many blessings to our family. She will do many great things in her life and will not be limited to what the medical field says she can or can not do. I am confident as her mother she will do all the things a healthy child does once her fragile heart is fixed :) We will not limit her.
So many people have sent gifts and letters, made meals, sent their love and support, offered prayers and fasted in our be half, watched Caleb, and cleaned my home. We are ever so grateful... I have not forgotten the service and one day I will get a personalized note to you all. I am truly touched by the love and peace I have felt... One thing I have learned thus far is one way Heavenly Father blesses, uplifts, sustains, and lifts some of the burdens we carry is through the love and service of others. I have felt this love, we as a family have felt the peace that comes from the spirit.
Caleb is doing wonderful and loves being a big brother. He will get diapers if asked and will ask to hold Hannah. It is so cute... "hold" he asks.... so you let him hold her and in 3 minutes he says"done" and if you aren't on your toes he will put her down with or without your help. When he says done he means done :)
With love,
Sam
We do not get to go out as a family... we get to go out with Caleb (which is wonderful) while Hannah stays home with her nurse. So as hard as it is, it is also a blessing otherwise we would never leave the house. We have to be very careful not be exposed to illness.
We will have a weekend nurse starting on Saturday and I am excited and ready to go back to church.
At times I cry because I am normal and if given a chance to really dwell on things the negatives and ugly what ifs rear their head in my direction. So what do I do to make these doubts go away? Pray morning and night and when I start to feel sad, I have learned to take one day at time, to be thankful for each day we are blessed with, to be positive with every new challenge, and to focus on the now... the future will come sooner than we expect.
How easy it is to take for granted the simple joys of life that seem so mundane until you lose them. For all the moms out there... enjoy nursing even if it seems tedious at times, enjoy giving baths, enjoy the cuddles, and cherish the noise of a healthy cry. I miss nursing and the bond that comes with it. When my baby cries it is soft and weak because it is hard work for her heart. Hannah at times due to her heart just wants to be put down and left alone. She is getting better. The simple every day things that defines being a mom to a healthy baby really are joyful even if they seem boring or not so fun at the time. I miss them.
Hannah is an amazing daughter of God! She has already brought many blessings to our family. She will do many great things in her life and will not be limited to what the medical field says she can or can not do. I am confident as her mother she will do all the things a healthy child does once her fragile heart is fixed :) We will not limit her.
So many people have sent gifts and letters, made meals, sent their love and support, offered prayers and fasted in our be half, watched Caleb, and cleaned my home. We are ever so grateful... I have not forgotten the service and one day I will get a personalized note to you all. I am truly touched by the love and peace I have felt... One thing I have learned thus far is one way Heavenly Father blesses, uplifts, sustains, and lifts some of the burdens we carry is through the love and service of others. I have felt this love, we as a family have felt the peace that comes from the spirit.
Caleb is doing wonderful and loves being a big brother. He will get diapers if asked and will ask to hold Hannah. It is so cute... "hold" he asks.... so you let him hold her and in 3 minutes he says"done" and if you aren't on your toes he will put her down with or without your help. When he says done he means done :)
With love,
Sam
Monday, October 5, 2009
What an Interesting Health Care System We Have
What an interesting health care system Kansas has in place. It is also interesting how patients are treated by the physicians too. Don't misunderstand me, I do like the health care system that is in place, however, I also know that it isn't perfect.
Today was an interesting day, but in the end turned out to be a good day. Sam went out on the town with Caleb to run a few errands while someone watched Hannah at the house. One of those errands was to gather Hannah and Caleb's medical records. For our situation it is important that we have all the information possible to make sure that nothing gets overlooked. When Sam went into the pediatrician's office to request the medical records today they told her that she couldn't have them without prior authorization from the doctor. This was quite frustrating for Sam. She wasn't able to get a copy of Hannah's medical records even after she signed several HIPAA forms authorizing the release of Hannah's records to all of the specialists that request them. How come it is more difficult for a mother to get access to her child's records than it is for a doctor. We know that there is additional information on those records that we haven't been told about, which is why we want a copy. For some reason some doctors don't tell their patients everything that they document. Is it for the safety of the patient? I don't know, that seems rather contradictory.
The other interesting thing is that once Sam gets the doctor's authorization she would have to pay for the medical records. It's a Kansas law that medical practices can charge for the labor and materials for the release of medical records. Which I guess is alright, but the only reason why they had Caleb's records from Iowa City was because Sam hand delivered them to the office. They hadn't requested them for some reason prior to his first appointment so we gave them the copy that we had gotten for free from Caleb's doctor in Iowa City. When Sam requested those same medical records she was denied. She had to get authorization from the Iowa City doctor, the same doctor that had given those records to her in the first place and those same records that Sam gave to the pediatrician here in Topeka. We got that one sorted out and they decided to give them back to us after they called Iowa City.
I would like to clarify one thing. Through this whole process Sam has been Hannah's advocate. She has been a strong willed person and very direct with the people that she has been interacting with. When she doesn't like something that has been said she will make sure that everything is understood clearly. So when I previously said that she about ripped the nurse practitioner's head off that was my perception of her sorting things out. She did great job staying calm and getting answers. She just had a very very strong tone in her voice that let the nurse know that she wasn't happy. I'm grateful that she is in charge of Hannah. She is doing a great job.
Keep praying for us. We've already seen miracles happen in Hannah's life. She has made great progress. Our next hurdle is this Friday. We are going to Kansas City to see the cardiologist. They will be placing a catheter in her body to take a video of her heart and do other things while they are in there.
Today was an interesting day, but in the end turned out to be a good day. Sam went out on the town with Caleb to run a few errands while someone watched Hannah at the house. One of those errands was to gather Hannah and Caleb's medical records. For our situation it is important that we have all the information possible to make sure that nothing gets overlooked. When Sam went into the pediatrician's office to request the medical records today they told her that she couldn't have them without prior authorization from the doctor. This was quite frustrating for Sam. She wasn't able to get a copy of Hannah's medical records even after she signed several HIPAA forms authorizing the release of Hannah's records to all of the specialists that request them. How come it is more difficult for a mother to get access to her child's records than it is for a doctor. We know that there is additional information on those records that we haven't been told about, which is why we want a copy. For some reason some doctors don't tell their patients everything that they document. Is it for the safety of the patient? I don't know, that seems rather contradictory.
The other interesting thing is that once Sam gets the doctor's authorization she would have to pay for the medical records. It's a Kansas law that medical practices can charge for the labor and materials for the release of medical records. Which I guess is alright, but the only reason why they had Caleb's records from Iowa City was because Sam hand delivered them to the office. They hadn't requested them for some reason prior to his first appointment so we gave them the copy that we had gotten for free from Caleb's doctor in Iowa City. When Sam requested those same medical records she was denied. She had to get authorization from the Iowa City doctor, the same doctor that had given those records to her in the first place and those same records that Sam gave to the pediatrician here in Topeka. We got that one sorted out and they decided to give them back to us after they called Iowa City.
I would like to clarify one thing. Through this whole process Sam has been Hannah's advocate. She has been a strong willed person and very direct with the people that she has been interacting with. When she doesn't like something that has been said she will make sure that everything is understood clearly. So when I previously said that she about ripped the nurse practitioner's head off that was my perception of her sorting things out. She did great job staying calm and getting answers. She just had a very very strong tone in her voice that let the nurse know that she wasn't happy. I'm grateful that she is in charge of Hannah. She is doing a great job.
Keep praying for us. We've already seen miracles happen in Hannah's life. She has made great progress. Our next hurdle is this Friday. We are going to Kansas City to see the cardiologist. They will be placing a catheter in her body to take a video of her heart and do other things while they are in there.
Thursday, October 1, 2009
Cardiology
What an interesting trip we had today at the Children's Mercy Hospital in Kansas City. We had two appointments which were about seven hours combined. They were so kind to call the audiologist to let them know that we would be late to our second appointment so we could go eat some food.
We met with the cardiology clinic first. Hannah had an EKG and another echocardiogram. This was Hannah's thrid echo but there was something new discovered. She has already been diagnosed with Tetralogy of Fallot(ToF), which means that there is a large opening between her right and left ventricle. Today they noticed that there may be an aortopulomary window defect which I think means that the aorta and pulmonary arteries are attached through a hole between them both. They aren't 100% certain that this new discovery is happening so they ordered a catheter for next Friday. The catheter will enter her body near her groin and make its way up to the heart. This catheter will take video, pressure readings, blood samples and probably a million other things. They plan on placing a dye in her blood to watch where the blood flows. This will help them see if there is a hole connecting the two arteries.
Due to this new discovery her surgery may be as soon as a couple of months instead of the 6 to 12 months that they would wait if it were just ToF. The sooner she has heart surgery the sooner she should be able to get off of ther G-Tube (feeding tube) if everything goes smoothly. Mom is totally for that. The G-Tube in theory is great but in practice is extremely inconvienent, however it is still necessary for Hannah's situation.
So after 4 hours with several nurses, a nurse practitioner, and a cardiologist we were done. Luckily my wife was determined to figure out what was going on. At first I thought she was going to rip the nurse practitioner's head off, luckily she was able to keep herself calm and because of her due diligence Sam helped the people at Children's Mercy Cardiology get up to speed with Hannah. Sam got answers. They didn't know what was going on with Hannah, which upset my wife (for good reasons too) because she didn't want Hannah to get lost through the cracks of the system. After everyone was on the same page things went much more smoothly and we ended up really liking the nurse practitioner and everyone else that was helping us.
We met with the cardiology clinic first. Hannah had an EKG and another echocardiogram. This was Hannah's thrid echo but there was something new discovered. She has already been diagnosed with Tetralogy of Fallot(ToF), which means that there is a large opening between her right and left ventricle. Today they noticed that there may be an aortopulomary window defect which I think means that the aorta and pulmonary arteries are attached through a hole between them both. They aren't 100% certain that this new discovery is happening so they ordered a catheter for next Friday. The catheter will enter her body near her groin and make its way up to the heart. This catheter will take video, pressure readings, blood samples and probably a million other things. They plan on placing a dye in her blood to watch where the blood flows. This will help them see if there is a hole connecting the two arteries.
Due to this new discovery her surgery may be as soon as a couple of months instead of the 6 to 12 months that they would wait if it were just ToF. The sooner she has heart surgery the sooner she should be able to get off of ther G-Tube (feeding tube) if everything goes smoothly. Mom is totally for that. The G-Tube in theory is great but in practice is extremely inconvienent, however it is still necessary for Hannah's situation.
So after 4 hours with several nurses, a nurse practitioner, and a cardiologist we were done. Luckily my wife was determined to figure out what was going on. At first I thought she was going to rip the nurse practitioner's head off, luckily she was able to keep herself calm and because of her due diligence Sam helped the people at Children's Mercy Cardiology get up to speed with Hannah. Sam got answers. They didn't know what was going on with Hannah, which upset my wife (for good reasons too) because she didn't want Hannah to get lost through the cracks of the system. After everyone was on the same page things went much more smoothly and we ended up really liking the nurse practitioner and everyone else that was helping us.
Audiology
Hannah has an excellent audiologist following her. She had an extensive hearing exam that took about two hours. And we found out excellent news!!! She has normal hearing in her right ear. That is wonderful. This will be a huge advantage for her. Remember that during the first three days in the hospital they told us that she needed nose and heart surgery and was blind and deaf. We have since found out that she isn't deaf and will have some vision impairments but probably won't be completely blind. So to someone reading this for the first time it may seem terrible what Hannah is going through but things are looking better than what we had expected.
Hannah does have a follow up visit for an additional hearing test to finish her left ear. She has to be completely asleep to do this exam and needless to say that after an hour of being nearly perfect she decided that she was hungry and not going to cooperate anymore. The diagnostics so far isn't looking good for her left ear, but we are still hopeful. We have already seen so many miracles in her and our lives that we aren't going to count her out yet. Please keep praying for our little princess. We do believe that her one ear is already a blessing to her and her family and is a result to many heartfelt prayers and fasting for our little family.
We would also like to give a big thanks to Children's Mercy and the wonderful staff that they have there. We enjoyed the people that we worked with and feel grateful for their diligence on helping their patients.
Hannah does have a follow up visit for an additional hearing test to finish her left ear. She has to be completely asleep to do this exam and needless to say that after an hour of being nearly perfect she decided that she was hungry and not going to cooperate anymore. The diagnostics so far isn't looking good for her left ear, but we are still hopeful. We have already seen so many miracles in her and our lives that we aren't going to count her out yet. Please keep praying for our little princess. We do believe that her one ear is already a blessing to her and her family and is a result to many heartfelt prayers and fasting for our little family.
We would also like to give a big thanks to Children's Mercy and the wonderful staff that they have there. We enjoyed the people that we worked with and feel grateful for their diligence on helping their patients.
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