Not to be Forgotten

Caleb has not been forgotten :) He is doing really good and is such a wonderful little boy! He has been hanging out with Grandma Teed and he does really good with her as long as I am not home. He doesn't quite understand what is going on, all he knows is that I am gone a lot. He is such a trooper! Some things that Caleb likes: cars, building towers with his blocks, playing with daddy, going to the park to play on the slides, coloring, and reading books. I love this little man.... he is amazing and has such a sweet spirit.

How I have Felt

I would like to share a few of my feelings on how I have felt since the birth of our sweet Hannah. I of course have cried and have had my hard days, some days are better than others. I have had this overwhelming sense of peace and comfort through this entire process of getting more information. I know that this feeling is from my Heavenly Father and I know that I would not be doing as good as am if I didn't have the gospel in my life. It gives me some understanding that would be lost without it.
My husband is also an amazing strength to me and if it weren't for his diligence there would not be so many updates...so I am grateful that he makes these posts.
It is hard, it is not what I expected.
My Hannah first off is a normal child, we do not know anything about the extent of what vision she will have and I have high hopes for her. As of now the battle we are fighting has to do with her heart and getting her the surgery she needs to be strong. It is because of her heart that she can not nurse or use a bottle....it is way too much work for her little heart to do all the things involving eating and keeping her heart rate down. So until she gets her heart taken care of she will be using a feeding tube. Hannah's brain development is normal.... we are to treat her eyes as she can see until we learn otherwise. We will not know anything for sure about her eyes until she is older.
I am tired, not because I have a newborn at home but because I am going back and forth from the house to the hospital, getting up every 2 hours to pump to make sure Hannah is getting my milk, and getting up early today for what was the beginning of her surgeries. It is scary not knowing what the future holds but I am comforted by the spirit that all is going to be okay. I have had this feeling of all will be okay from the moment they told us she had to taken cesarean.
The thing I struggle the most with is the overwhelming feeling of how to give my attention to both children that need my love when we can not be together as a family.
I am grateful for Kayleen (grandma Teed) and the time she allows me to be with Hannah at the hospital while she takes care of Caleb. Caleb has not been forgotten and is doing wonderful. He is an amazing little man! Thank you to all who have helped with meals, to those that have kept us in their prayers and thoughts, and to those that have offered help (I may be calling). My husband is wonderful... sometimes he pulls the plug on me and makes me stay home to get my rest but I know it is for my own good. Often times I spend the morning with Hannah, the evening with Caleb, and then after Caleb goes to bed Rick and I will spend a few hours of the night with Hannah.
These are some of the things I felt and we are doing good. Thank you again for all the love and support!

Sam

1st Surgery - All is well

Today, Hannah went in for her first surgery at 8:30 and by 9:45 she was all done. Everybody in the room said that she behaved herself very well. She is doing good and hopefully will have a speedy recovery so that she will be able to come home soon.

Hello

Hey guys! Look at my pretty flower my mommy dressed me up in.

Thank you for all of your prayers. I appreciate them very much. Love, Hannah

The New "Normal"

Today we had a Medical Care Conference with the doctor, resident nurse, social worker, and another person. It wasn't what we expected. We didn't come out of the conference with very much more information than we already had. From what we have gathered we don't think any of the doctors here have seen a case of Charge syndrome so all that they know is from books right now. After tomorrow we will be going to Children's Mercy in Kansas City for most of the doctor appointments.

We were able to make some decisions on the medical care of our little Hannah, and so our new life begins. . Tomorrow at 8:30 she will be having surgery, which is the start of several too come. She will be 8 days old. They will be surgically placing a gastric feeding tube in her which is placing a tube directly into her stomach. They will then remove the feeding tube that she has in her mouth and this will help her live a more normal life. It seems to be a simple procedure but none the less it's a surgery.

She will have to have this feeding tube for several months. We are hoping that after her heart surgery that she will be able to have better success nursing or feeding from a bottle.

Never Stop Believing

Hannah had another echo cardiogram today and another hearing test. We won’t find out the results to the echo cardiogram until tomorrow. We have our conference with the doctors set up for 1:00 on Tuesday. We should have plenty of more information about Hannah and what will be happening in the near future. As for her hearing test she didn’t pass the second one and they will be doing one more before she leaves. This does not mean that she is complete deaf. Her hearing may improve over the next several months as she grows. We still feel extremely optimistic about her hearing, her vision and her future. Miracles still happen. Never stop believing.

Hannah's situation

I have left out one key piece of information that helps tie everything together. This might help those of you wondering about Hannah's situation. Early on in the process one of the many doctors that we talked to mentioned that Hannah might have CHARGE syndrome.

CHARGE is an acrynome for (C)oloboma - vision impairment, (H)eart defect, (A)tresia of thenasial choanae - undeveloped nasal passage way, (R)etardation of growth and/or development, (G)ential and/or urinary abnormalities, and (E)ar abnormalities and deafness.

As of right now Hannah has been diagnosed with the coloboma, heart defect, and atresia. She has yet to be diagnosed with deafness and has had a brain and kidney ultrasound which came back negative for any defects so retardation of development and urinary abnormalities have been ruled out. Although she does have several symptoms the doctors aren't able to determine if it is Charge syndrome until Tuesday.

This syndrome is not inherited rather occurs within the child during the earlier stages of the pregnancy. Nothing that happened during the pregnancy is the cause for this change either. It is also extremely rare that a family have multiple children with Charge syndrome. It is said that there is a 0.08% chance of a child being born with this disorder (8 in ever 10,000 babies) and a 1 to 2% chance that a family would have multiple children with Charge.

This last part was taken from a document at http://www.chargesyndrom.org/

Although these children have many problems, they can survive and become healthy, happy citizens. Doctors. visits and medical problems taper off and/or change as your child grows. Keep in mind, every child is different. Accept not knowing and enjoy today while doing what is possible to prepare for the future. NEVER underestimate your child's abilities. Always put the disability second. Be involved, interact and enjoy because, as hard as it may be at times, they grow up fast,
overcome many obstacles, and will make you proud.

We love you Hannah and we are already proud parents of your beauty that you have brought into our lives!!!

Day at the hospital

Today was a great day. Sam had a follow up visit at the hospital and then we spent the rest of the time with Hannah. We left at around 11:00 and got back home at 5:00 and enjoyed every minute of it. They even wheeled Hannah out to the NICU entrance way so that Caleb could see her through the doors. We dressed Hannah up in her "home coming outfit" that aunt Johnney got her and luckily we did because she is already too big for new born. We couldn't button up the top button on her dress. What a cutie and mom is looking good too.

No child under the age of 3 is allowed in the NICU. That is one of the things that makes this situation difficult, we can't be with both of our children at the same time. Sam was at the hospital for 5 days and now Caleb is having a difficult time understanding that she will be home for now. He thinks that mom is always going to leave him which is the sadest thing.

Unitl Tuesday....

Yesterday Sam was discharged from the hospital. The doctor was able to let her stay for one extra day becausae Hannah is in the NICU. Yesterday was a hard day for the family because we knew that we had to go home and Hannah wouldn't be with us. What a strange feeling it is to be home from the hospital and not having your newly born child there with you. Given the situation Sam is doing great. She is a strong woman.

We are waiting until Tuesday now for more information on our little girl. She is going to have another echo cardiogram on Monday and possibly have her hearing tested again. She didn't pass her first hearing test, this is not unusal for newborns. On Tuesday we should be having a conference with all of the specialist that are examing her, a social worker, insurance specialist and her doctor from the NICU. At the conference they will inform us if we get to bring Hannah home until her heart surgeory or if she will have to be emitted to the Children's Mercy in Kansas City.

We have high hopes that she will be able to come home to us on Tuesday. She doesn't need any extra support while in the NICU such as oxygen. They are monitoring her breathing rate because of some possible problems that might occur due to her heart defect. The other concern would be her feeding because she needs to gain weight but because her breathing is higher than normal she tends to burn more calories than a typical baby. Tube feeding is one method that helps her get all of the food that she needs. Hannah has a difficult time nursing due to her closed right nasal passage or due to her heart problem. If Hannah does come home with us we will definitely learn how to tube feed her until she is able to be nursed.

Thank you for those that have kept us in their prays. We truely are grateful for all of the selfless support that has been offered to us this past week. We pray for a good outcome this Tuesday.

Hurray!!! Some wonderful news at last!

We just had a sigh of relief. Over the past three days we have been bombarded with overwhelming information about our beautiful daughter Hannah. However, today when we went down to see her the doctor and nurse practitioner came into the room to see how we were doing. They also weren’t sure how much information we knew. We had been waiting on the results from the brain and kidney ultra sounds. Her brain development is normal and her kidneys look good. This brought great comfort to our hearts.

We feel that Hannah is going to have a wonderful life. She will still need to overcome a couple of significant surgeries and deal with a slight visual impairment for now but we feel strongly that she is going to grow into a health, normal, beautiful child and adult.

Thank you for the great news doctors.

Our beautiul Hannah

In our eyes Hannah is perfect. It is extremely difficult for us to believe all of the doctors when they are telling us about the complications that she may have in her life because when we look at her we just see a perfect little baby. In the long three days that we've been in the hospital with Hannah she definitely has made our family stronger. We feel strongly that we need to treat her as a normal child because that is what she is to us right now. She will need some special attention but that won't change the way that we look at her. She is going to have a beautiful life.

Optometrist

Yesterday baby Hannah had an optometrist look at her eyes. The prognostics didn't look good from her report. They are saying that she is legally blind, but they can't say to what extent. This has been some of the hardest news that we've heard so far. We definitely are getting a second opinion on this matter. We feel comforted that she will still be able to see because she is extremely responsive to light. We love you Hannah, you're doing so great.

Hannah Teed

Hannah Teed was born to this world on the 8th day of 8th day of September of 2009. She truly is a blessing inour lives. Early on in the pregnancy we felt that her name should be Hannah. In Hebrew Hannah means, Grace of God, and that definitely is what she is. She is so precious. The nurses have been impressed with how calm and peaceful she is. Welcome to our family Hannah.

Grace of God

This blog has several purposes mainly to help mom and dad keep all of the events that have been occurring in order and to help us remember all of the events that have been unfolding over the past couple of days. Also, it has been difficult to keep family informed because there are usually several new updates on the baby’s situation every several of hours.

I would like to say that Sam did enjoy a healthy pregnancy and that the baby’s health overall is great. She is a strong little girl and is cooping with everything very well.

Hannah was born with an emergency C-Section because every time mother would contract her heart rate would drop. After about 7 hours of being closely monitored the doctor did order that the do C-Section. Baby girl was born at 4:16 pm on September the 8th, 2009. She was 21 inches long and 8 lbs and 4 oz. She had difficulties crying and didn’t make her first noise until 4:18, that was a wonderful noise to hear. She had quite a bit of fluid still in her lungs that she was trying to get out. We were told that when a baby is born with a C-Section that they don’t have the opportunity to have the compression on their body from a natural birth and then a sudden decompression which helps remove more of the fluid from the body. That was only the start of several pieces of information that we started to hear.

It was another 7 hours before mom was able to hold her new precious new born baby. Baby girl was stable enough that they brought her in the room to see if she would nurse. We kept her for two hours and decided that we should get some rest at 1:30 in the morning. The reason why they had kept her in the nursery for so long was because she kept on going blue when ever she cried. They had originally said that it was caused by a blockage in her nasal passage, but we later learned that it was due to a cardiovascular abnormality.

Around 11:00 am baby girl had her hearing tested. She did not pass. They say this is normal for newborns not to pass their first hearing exam. They will give her another test before she is discharged form the hospital.

3:30 pm I went to the nursery to see when baby girl was going to have her CT scan. It happened that when I showed up there they were receiving a phone call from the radiologist saying that they were ready for her to come down. I was able to accompany her to the radiology room and wait outside while they were taking an “x-ray” of her facial bone structure. We had a visit from the ear nose and throat doctor at around 6:30 pm. He talked to us about the results from the CT scan. He was able to determine that she as something called choanal atresia. Everything was sounding very promising because what baby girl choanal atresia can be corrected through a couple simple surgeries. And then we heard the very dreaded word “but”… but there was something more serous with her heart he told us. We had originally been told that they had found a heart murmur during her routine check-up right after she was born. During all of this the NICU doctor had ordered an echo cardiogram. They took a more in-depth look at her heart and how it was functioning. The ear nose and throat doctor wasn’t able to tell us more than that they had found more complications.

Shortly after the ear nose and throat doctor we were able to go into the nursery to see baby girl. The NICU doctor was in the nursery to give us the latest and greatest on our baby girl. This was probably the most difficult information to handle, especially for daddy. We were told that she had a “double outlet right ventricle” meaning that she was going to have heart surgery. What is happening is that there is one ventricle that is on the right side of the heart that needs to be on the left side and because of it the blood traveling through that artery is bypassing the lungs and therefore not receiving the oxygen that the body needs. We still have yet to talk to the cardiologist but if this is the case then she will definitely need heart surgery. This was by far the most difficult news for me to handle and it took me a while to cope with the news.

When we heard about the heart problem we were able to spend some time with baby girl for a while in the nursery before she was admitted to the NICU. At this time we felt it important to give her a name and that is when we decided on Hannah Teed. This was our first name that we had liked, but since then we have thought of several other names and narrowed it down to Anabelle, Isabella, or Alexis. But after learning about what she is about to go through we felt it appropriate to go with our first impression. In Hebrew Hannah means, Grace of God.

After learning about everything that Hannah needs to have done on her and having many more exams to be done on her I would like to tell everyone that Sam is doing great. She is extremely calm and continues to tell me how much peace she feels for Hannah and her situation. We have been expressing our feeling to one another quite regularly and we are trying not to keep anything bottled up inside during this time. Sam is a great strength in my life and she is an amazing women. She is entirely optimistic about Hannah and I am blessed to have her in my life. I really do appreciate all of the prays that people are offering for our behalf and we do feel comforted as we are in the stage of gathering information.

Thank you for all the support, flowers, visits and words of encouragement. I know we are in the right place for Hannah to receive the proper care.

Walks, Doctors, Contractions, and 40 Weeks

Today should be the day that this baby comes.... but it's not going to happen that way :) As with Caleb this little girl is going to be late. I have something to say about walking, it does not work! Yes, walking is fun and I have enjoyed going on 2 mile walks these past 3 days with my husband and son but it has not helped me progress one bit.

I started having contractions on Friday and all through the weekend. They would get about 10 minutes apart and then stop all together. When I have contractions they do not hurt, they kinda take my breath away and that is it. So we thought for sure we have to be getting close. We were so excited to go to the Doctors office today and see how far I have come and the results.... NOTHING! I am where I was 3 weeks ago, barley a 1.

I have done this once before so I know that babies come when they want and if like Caleb, 9 days later. I am fine with this but what I am not okay with is every time I go to see the DR. its like they have taken scare tactics class 101.

The DR. we saw today went on to say why they don't want me to go passed a week and one of the reasons was still birth becomes a possibility. Why do they have to share these things with you? When I was at this stage with Caleb they never shared this information with me or asked me if I wanted to be induced. They simply said well you are late lets do a stress test and take it from there.

I still feel the same way about inductions as I did a week ago... let the baby come on her own if she can or of course if it gets to the point where she has to come out an induction will have to do. However, I feel like their scare tactics are working my nerves. I only want the best for my baby, so does this mean do what the DR says or stick to my guns? For now we have a stress test on Thursday and they have emailed my DR. to see how long he is willing to let me go before he pulls the plug... from the sounds of it he may not let me go past Monday night and then he is going to induce. I feel frustrated! As much as we want her with us and as exciting and tempting inductions are we just want to the right thing and I am upset that they try and scare you into inducing. They started asking before I even hit my due date. Aren't DRS. supposed to help calm your nerves? If I heard correctly I don't even think you are considered post term until after 42 weeks...

So here we are 40 weeks today and no baby, a stress test on Thursday, a lot to think about, a clean home, and a happy family waiting for our little girl to make her debut!