Christmas

Hope all had a very Merry Christmas! We did... we even ended up with a white Christmas! Ricky and I had fun playing Santa and seeing how excited Caleb got...2 is a fun age!

Thanksgiving & Christmas Prep.

What an eventful month! It has been a while since my last blog and I do apologize to all that follow. I must say though that it sure is nice to be busy caring for my kids and of course no news is good news :)

We have spent the last month enjoying the holidays as a family. We spent Thanksgiving at home in our Pj's and it was so much fun! Ricky grilled our turkey while I cooked the rest of our food.

We made a turkey, an Indian hat, reindeer, a Santa Clause, snowflakes, a ginger bread house, 12 loaves of cherry bread, a center piece for my table, put up our Christmas decorations, went to Ricky's work Christmas party, Drs. appointments, family pictures, and the best part of all we played in the snow!

Updates....

Hannah: She passed her swallow study test! We get to feed her by mouth. This is a slow process but it is one step closer getting the gtube out! She has finally reached the 10lb. mark, she sticks her tongue out, she plays with her hands, she can hold her head up, and she reaches for her toys! She is doing so good right now... she is our little angel. Hannah now has a more expensive piece of jewelry than I will ever own in my lifetime... she got her baha (like a hearing aid). This will help her localize noise. We are excited for this sweet girl..she is doing so many great things and is truly a blessing to our family!

Caleb: He is getting so big! He loves his sister and is a great helper. He is into trains, Dumbo, reading books, playing in the snow, and his most favorite thing to do at the moment is to help us cook. Caleb has such a strong spirit and is an amazing boy! We sure do love our sweet boy!

Ricky: plays basketball in the mornings, he has been busy with work and really does enjoy his job, reading his new book, plays with the kids at night so I can have some me time, and his new hobby.... making apple pie from scratch! What a stud!

Me: I haven't really done a lot of new and exciting things. I have been busy being mom and getting us used to our new normal. I love being able to stay at home! Over the past few months we have gone back to KC a few times and I have met some amazing women. I have learned a lot from having Hannah. There are so many families out there (some that our more heroic than I could ever explain) that are in a similar situation or worse situation. You can tell that these families are tired by looking at them but at the same time you can see the love and hope in their eyes they have for their child. I have also seen the opposite where families crumble under the stress and loss of the dreams they once had. This makes me grateful for the Atonement of Christ, my supportive husband who sees the good in all, our family and friends who help lift us up in our hard times, and all the resources we have been blessed with to help our sweet girl. I feel so blessed and am overwhelmed with the love and peace I have felt these past 3 months and continue to feel.

Love,
Sam

Blessings

The last 2 weeks have been great! The first week we were home my mom came to visit and help me out with the kids. I had a lot of fun and really enjoyed my time with her :) Rick's parents came for a visit as well and we always enjoy their company!

Hannah is 11 weeks old and has finally reached the 9lbs mark. We are excited for this. She is growing and getting stronger every day. She spends a lot of time sleeping but in her awake time she coos at us, smiles, and giggles. The vision teacher stopped by to evaluate her and she was impressed with Hannah. She said that it seems Hannah is using her vision. Coloboma is a gap in the eye... it is our job to help Hannah focus and learn to look around the gap in her vision. She is doing so good! She will get her baha in December and this will allow her to hear out of her left ear and better localize sounds. She had her cardio check up on Monday and the doctor is satisfied with her progress. Hannah has some underlying problems and we will know more about those in January when she goes in for another heart cath. Dr. Swanson is going to let Hannah out grow her meds and we will see how she does after that.

Caleb is doing great and is such a sweet boy! He loves his sister and loves helping mommy and daddy. He is growing so much and no longer looks like a toddler but a boy. When did this happen? I must have blinked.

Ricky is great! He is back to work and enjoying that. He is such an amazing man. He is always willing to help me and never complains. he loves the kids and Hannah does indeed have him wrapped around her finger. When he comes home the first thing he does is play with Caleb and give both kids loves! He always asks me if there is anything I need and that if I want to go out and have alone time that I should go and he will take care of the kids. He truly is an example of selflessness. We just celebrated 4 years of marriage last weekend. I am so grateful for Ricky and look forward to an eternity with him!

I am doing good. I have a cold right now but other than that I can't complain. Life is good. I am a blessed woman. I am thankful for so many things but the first thing a am thankful for is a loving Heavenly Father who loves me and knows of my individual needs. He uplifts me in my times of need and all the blessings I have are because of Him. I have a different perspective on the atonement of Christ and I am grateful for His sacrifice so that we some day could all return to live with our Father in Heaven and return to a perfect state of being, bodies and all.

I am grateful for the nursing care we receive in the home so that I can get my errands done and spend time with Caleb. I am grateful for family and friends and that they have done for our family. The last thing I will share is that I am ever so grateful to be a mother. I love being a mom and know that this is the one of the best blessings I could ever have in my life time. It is a divine gift from Heavenly Father. They have already taught me so much probably more than I will ever teach them. I learn something everyday from being a mother!

Happy Thanksgiving :)

Love,
Sam



Caleb for some reason unknown to us likes to sleep in the crib form time to time.

Hannah loves her sugar bear :)

We made a hat and a turkey for family night.

So cute

My new haircut... it sure was nice to get my hair done after 4 months of canceled appointments :)

What a stud! Celebrating 4 years together

He loves his sister

Not a happy girl :(

My mom and I got our hair done together.. she is the cutest! I went back and got mine shorter

Caleb loves to play in the leaves

Surpassing all expectations

We've been home for two weeks now and loving it. Yesterday we took Hannah out for the first time because we wanted to get a flu shot. That wasn't easy. Hannah has a strict schedule of when she gets her meds and feedings so we didn't have much time to do everything. Needless to say that we were an hour late on her feeding. Oh well, stuff happens.

Today she weighed in at 9lbs even. She has been gaining 1 ounce every day on average since we've been home. That is exactly what the doctors want to see and I would like to say that mom was right once again. The doctors wanted to fortify her milk (suppliment it with formula) and mom didn't like that idea. It was hard enough for mom to conceed not being able to nurse her new born let alone give her formula. Well in the end mom was right and Hannah didn't need any added formula. We might add that we tried it two other times before and Hannah just spit all of the food up anyways.

Hannah has two nurses now that watch her at the house. One during the day and one during the night. I will tell you that I was very hesitant on getting a night nurse (she comes from 10:30 pm to 5:30 am while we are sleeping) but after we missed one of her medications and then just last weekend she started to show signs of digression I realized that Hannah is still much too delicate for any slip ups in her care giving so I bit the bullet and decided to go with the night nurse. I just felt like I was not being the parent that I should be to my daughter by getting help during the night. I'm stubborn and thought that we should be able to do it since we are her parents, but then again we don't have the typical child right now. Once she keeps growing and completely heals from the heart surgery then things should be much more normal.

Hannah keeps on impressing the doctors and assistants. The neurologist was truly impressed with Hannah's interactions with people. He has seen 10 other charge babies before so he had something to compare Hannah to. The TARC lady came over today to work with Hannah's vision. Before she came over she read up on CHARGE so she knew what to expect. Well, once again she was impressed. Hannah was following the objects that were placed in front of her. We also learned how we can help Hannah develop the sight that she does have. Oh, and one side note, we were the second family that didn't care much for the opthomologist from Topeka and there are other doctors that weren't impressed with the doctor either, so I guess we weren't alone when we decided that we would go find someone else to help us.

Hannah also has occupational therapy everyday. She has cute little splints for her hands and we do stretches for her arms and legs every day. When we were in the hospital she was extremely tense (high muscle tone) and we couldn't get her fists or arms open. This is a side effect from the open heart surgery. Check out the pictures of Hannah before and after:

Before

After

Becausae we work with her every day she seems to be back to normal.

Hannah is in good hands right now. We are extremely grateful for all of the prayers that were given for our family's behalf. We have seen many miracles happen in the long couple of months that Hannah has been with us. Our hopes are high for her and she is surpassing them already. Hannah loves to lay flat on her back and stretch her whole body and when she is doing that we can get her to laugh and smile. She has definately come a long way.

Home

After four weeks in the hospital we are home! So much has happened since I last wrote. Monday I went to visit Hannah in the PICU and received the news that we were moving to the floor! I was so excited, we were one step closer to home. Before we went upstairs I meant with some neurologists who were looking into the seizure Hannah had last weekend. They ordered an EEG and the results were normal. What a process to get one of these done... poor girl! (picture below) As far as the size of her brain goes they are still standing by the only time will tell statement so we will wait and see. Dr. Graff and his fellow were extremely impressed with Hannah. They said they have never seen a charge baby as social, content, and attentive as Hannah. The fellow had Hannah in giggles. It was so cute and brought so much joy to my heart!

There were many different specialists in and out of our room all week, it was a revolving door. They seemed to all have one thing in common, and that is they were all impressed with the little miss. They also all mentioned how she seems to use her right eye to track and see. Of course she does! Did we ever have a doubt?

Hannah has some high muscle tone in her arms so OT/PT made her some cute little hand splints that she wears 3 times a day for an hour to prevent them from staying that way. They also have her taking Valium 3 times a day to help relax her muscles so we can do physical therapy. It has already helped and we are seeing a big difference from how tight they were 4 days ago.

We tried to feed by mouth but she was aspirating so we called the ENT to look at her throat. The conclusion is that her throat area is much to swollen to swallow correctly. This is common and caused by the surgery and from being intabahted twice. In a month we will follow up with the ENT and have a swallow test done. Hopefully everything will resolve on its own and then we can work on oral feeds and get rid of the Gtube :)

If we count the specialists needed for Hannah and the couple of groups involved with early intervention there are at least 10 different groups involved in Hannah's overall care. I need a bigger folder and I think it is safe to say that we have a MILLION DOLLAR BABY! The saying that babies are expensive is an understatement in our case :)

On Tuesday they said we could go home Wednesday but Hannah was having problems with her feeds so they wanted to watch her another day. Hannah has reflux and she was having a difficult time with that and the amount we were giving her. They lowered her volume of milk and started her on zantac. It has helped. Thursday we were set to go and then rehab added the Valium so they wanted to watch Hannah over night yet again. (she tends to act up with new meds) She did great! We said our goodbyes Friday morning and we are enjoying being home! I am loving being able to take care of both my kids again. Thank you to all that helped me take care of my babies!

We were driving home Friday morning and it was then I realized I missed the fall! Where did all the colors of fall go? They did what they usually do, they fell of the trees. Life goes on even if you are in a hospital for 4 weeks :)

So what is it like being home? AMAZING! Hannah's schedule is still a little overwhelming but we will get used to it. The most important thing is that we are together again as a family!

Here is a run over of Hannah's schedule:
7am- feed
9am- distribution of her medications (5 total) and put on her hand splints
10- feed/splints off
1pm-feed
4pm-feed/splints on
5pm- distribution medications/splints off
7pm-feed
9pm- Give meds/splints
10pm-feed/splints off
1am- feed/give medications

This is around the clock and the way feeds work there is really only about 1hr 1/2 between the next feeding time.

I am so grateful for my husband who is a great help, the home nurse we have for 5 hours a day, and my sweet Caleb who is an amazing kid. There are so many who have helped us and prayed for our family(you know who you are) and we are forever grateful and feel blessed to have so many wonderful people in our lives! Thank you all!

Hannah is still home bound and will be for the winter and spring. Her heart is still healing and will be for at least 6 months. She will always need to be watched closely for heart failure and will eventually need a valve replacement. We have learned to take every day one day at a time and as of today Hannah is doing great!

I have learned a great deal thus far in our journey and continue to do so each day. I have met other moms and families in similar situations. They are a great strength and example to me. I am not alone and never have been. I feel like we belong to 2 different worlds and they are both wonderful places to be! Life is a journey to be enjoyed so that is what we will do... we will cherish each and every day given to us!

With love,
Sam

Grandpa King and Hannah

Our first day home and all tuckered out! She loves her sugar bear.... so cute!Pretty in pinkThe EEG was not painful for Hannah, it was just a lengthy process

No one said this would be easy

Hannah is doing well. She should be moving to the floor tomorrow some time if she behaves through out the night. They will then watch her for a few days in recovery and then we should be set to go home :)

Last night Hannah had some twitching(thought to be a mild seizure) in her feet and fingers for about a minute. So far this was a one time thing. They wanted a CT of her brain just to make sure everything was okay. Around 1:30 today the PICU doctor came to deliver the news. The size of Hannah's brain is only about 80% of what a 7 week olds brain should look like. What does this mean? We really don't know at this moment. For now all it means is that Hannah is at a greater risk for developmental delays. Neurology is going to do an MRI before we leave. All this will do is tell us the structure of her brain, it does not and can not tell us what she will be able to accomplish in life.

What I know as her mother is that Hannah is a fighter and a survivor! She has been fighting for her little life from day 1! She may indeed be behind developmentally but Hannah has not had the chance to do all that a healthy baby gets to do. She has been in a hospital bed for more than half her life and is on at least 4 different medications to help her thrive. I know once given the chance she will catch up. This news is not easy to hear, as a parent you have dreams and hopes for your child and it was as if those dreams and hopes were ripped away from me in a moments time. I will not limit Hannah in any way! She has to have someone push her to reach the many milestones in life and to hope for her. I will do that no matter what. If Hannah does happen to have some developmental delays oh well! Hannah is the same to me today as she was when I first held her in my arms and that is she is perfect and I love her. She is who Heavenly Father intended her to be! She is loved by Ricky, myself, Caleb, and many others. That is whats important in life...love.

Ricky and I will continue to fight with and for this beautiful daughter of God that we have been blessed with. We will take this one day at time, that is all I know how to do. We will learn many new things together and this will only make us stronger as a family. We will not allow it to be any other way. Hannah has so many hurdles in life and this is just another one added in the mix of it all and we will overcome this obstacle as well as the others.

Again, we do not know what this means. This is going to be a wait and see process. We will take it one step at a time and we will learn as we go and do the things needed to help our little miss! Hannah has such a sweet spirit and she was given to Rick and I for a reason. We will care for her and love her unconditionally. She will teach us many things in our life. It has not been easy and it will not be easy but it has been and will be worth every second of every day!

Love,
Sam

Halloween

Halloween was great! We dressed Hannah up in a super cute headband and onsie to be festive and Caleb was a dragon (again). He loved trick or treating (trick treat)! We ended up going to this really nice neighborhood, the houses were huge! Caleb the dragon was a hit, his roar was so fun to hear. When we were finished and in the car driving away he kept saying "trick treat big house, trick treat big house" so cute! He is bathing at the moment and is asking me to go "trick or treat" Love it!

What a Rollercoaster Ride

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

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

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

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.

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

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!

Before

After

What a sweeter peters :)