You are a blessing and a joy, a 13 year miracle.

Starshia Ann Wright

Wed 04-12-06 Born into this world at 12:28 pm after a very long night of 14 hours. Your hand was over your head and it took the doctors a while to figure out. you were not coming into this world through the traditional way so they preformed a c-section. You were able to spend time with daddy while they were stitching mommy up. You got to see your Aunt and your grandparents and a few minutes with mommy boy I thought you were the prettiest little baby I had ever seen and I loved you instantly. You were born with a heart defect called Tetralogy of Fallot click the link to learn more about your defect LINK. You were Air lifted in a helicopter to Children's Hospital in Seattle. They hooked you to machines to help you breath and from there they decided you would need an operation. The doctors decided you have 21 chromosomes what this means is you have Down Syndrome. You are extra special and we know God chose us to raise you because he needed us to bring such a wonderful child into this world. I've only seen you for a short time my angel and I am so in love with you. Daddy is in love and everyone els is waiting for you to come home too.
Thurs 04-13-06 Mommy was recovering from having a major operation and daddy got some much needed rest and came to see you when he woke up. He brought mommy some good news about you saying you were o.k. and they were waiting to operate. They had to put you on a medication called PGE, this allows the ductus that wants to close stay open so that you get some blood flow to your lungs. Daddy brought mommy a picture of you and that meant a lot. That picture helped me get through the hard day and night till I could see your little face again in person. Children's Hospital also gave daddy a pager so they could keep in touch with us 24-7 and let us know what happens. They also informed us that we could call or we could come stay in ICU with you and that we would have 24 hour access to you. They took such good care of you and each Nurse and Doctor really cared.
Fri 04-14-06 The hospital let me out early so I could spend time with you. I rode to the hospital with daddy and when I got there you had lots of tubes hooked up to you but you looked so sweet. They call the place you are Infants ICU and the nurses here help take care of babies just like you. :) You had to have all those tubes so you could get food and the much needed medication. I grabbed your little hand and you responded by grabbing my finger and wiggling around as if to say hello mommy. It brought me so much joy to spend time with you and to see you with your daddy did my heart good. Daddy is so good to you and you love him so very much. :)
Sat 04-15-06 Today was a better day because we got to spend more time with you and we got to know more about your surgery. They will put a shunt in your little valve so that you can get oxygen flow until you have your permanent operation. You have the best staff of people helping you through this rough time in your life, mommy and daddy are so very grateful to God and the magic he works every day. You have so many people praying for you and many of them you will meet when you are able to come home.
Sun 04-16-06 Easter Sunday. We brought you a blanket from home, a bunny, and your yellow M-n-M with bunny ears to celebrate your first Easter. You look wonderful even though you still have so many tubes they help to keep you comfortable and some day they will be removed. They are still not sure when they can operate because they are waiting for you to get strong enough to go through it. Next year you will have an Easter dress and basket all your own in your own home. Grandma also got you a basket with a doll and a bunny that is on your shelf in your room.
Mon - Tues 04-17-06 - 04-18-06 Mommy became very sick and daddy had to take care of her. :( I had pneumonia , fluid retention, and I became anemic all at once. Daddy had to take me to the E.R. because I was so sick. We were not able to come see you since mommy didn't want to make you sick. We miss you so much and mommy will be better so we can come see you. I called the hospital and they told me you were ok and asked me how I was. Again they show a lot of compassion for you and us. Thank God for Children's Hospital.
Wed 04-19-06 Today they took out the breathing tube and you looked wonderful. :) They also backed down your medications and you are strong and holding your own. We are so proud of you baby girl. We got a video camera so we could get some pictures with you since we can hold you today. We are so thrilled to have you in our arms and to see your sweet face. You can see the movie on mommy's computer or someday on your web site. The nurses told us your grandparents could come see you tomorrow and they could hold you before you had your operation on Friday.
Thurs 04-20-06 We brought your grandparents to see you and boy were they thrilled for the chance to hold you. We took some pictures and captured a little video footage to show you when you are older. You opened your eyes and looked at us a little bit and you seemed very happy when you were in our arms. God sure has blessed us with the most wonderful daughter! You are brave, you are strong and you are precious.
Fri 04-21-06 This is this is the big day when you have your operation and you now leave the Infant ICU side and will go to the Cardiac ICU of the same floor when you are done. Your nurses signed your heart pillow and wished you well before you left. We took your gifts and your book called "My Heart" with us and would bring back your favorites when you returned. Daddy and I arrived in the morning and brought the camera so we could get some pictures and more video footage before you went in. The doctor explained very well what he was going to do with you and how it would work. He wanted to give you a shunt to help open that passage way so you could have blood flow and oxygen to your lungs. We enjoyed every second we got to spend with you and you were so adorable and sweet. It's so hard for mommy but I know how very strong you are and God is watching over you. They took you to the O.R. at around 9am. The doctor came out to tell us there was a change of plan and they were unable to do the shunt. They put a patch and a tube in to open that passage way and now it is up to you and your little body to decide when you have the next operation. The doctors are very hopeful and optimistic that this is a good choice for you. They put you on a bypass machine and proceeded to fix your heart then we were able to see you at 5pm. We brought the grandparents in to see you and make sure you were o.k. and then they went home. We came and sat with you for a few hours and you looked so wonderful! You had many tubes this time including a breathing tube to help you breath. A chest tube to help get some of the fluid out. A very small does of PGE just to make sure you were strong. An IV to feed you and keep fluids in, a probe on your foot to keep track of your oxygen, a tube to draw blood and check on you, and an arterial line to keep track of your heart rate and other stats. We were pleased and so were your doctors. They said you threw them a curve ball and of course I said "That's my daughter!" :)You've touched so many lives my little one. You are a trooper and you continue to fight. :)
Sat 04-22-06 You are still getting better and you continue to be strong and sweet. The nurses just adore you and your doctors are impressed and happy with your numbers. You are resting well and you look very comfortable and well taken care of. You have a lower oxygen stat than most people, see we need to be at 100 and you need to be at 70 - 80. This is the right mix of blood and oxygen that mixes in your lungs and so far you are holding those numbers. Mom and dad have been learning so much about you and we will continue to learn more as time goes by. They say you can come home in about 2 weeks. :)
Sun 4-23-06 Today they removed your chest tube and are talking about removing your breathing tube either tonight or tomorrow. You still need a little oxygen to help you but over all it is good. The doctors are still impressed with your progress and we still get to bring you home soon. At this time you are still being fed through a tube and so far your tummy is able to hold it in. We brought you the fuzzy white cat, your beanie zebra and your heart pillow for your bed. You amaze and impress me my angel daddy and I are still so very proud of you. They also began to feed you formula through a tube and so far you are doing well with that.
Mon 04-24-06 You're still stable and they are taking you off more medications and of course your breathing tube came out. You are very comfortable and your nurses tell us you are the sweetest little girl. :) I love to watch you and you open your eyes a little to peek at me. :)
Tues 04-24-06 I got to hold you today since you didn't have your breathing tube anymore and you had a few of those monitor lines taken out too. They placed you in a different part of the floor you were on called the bridge. You are now in a crib instead of the little ICU bed you were in and your nurse put you in a pink blanket with a pink cap. You opened your little eyes and looked at me, oh my little girl you are so precious and it makes me so happy when you look at me. Daddy will get to come see you tomorrow since his boss told him he could leave early. I know you will be so happy to see him. You had a rough time with your breathing because you have a little rattle in your chest but over all you seem comfortable. We got you all comfortable and snug in your blanket and mommy stood by your bed and talked with you till you went to sleep. You are eating more formula and they are thinking they can give you a bottle soon.
Wed 04-26-06 Daddy came to see you today because he had to work yesterday. His boss has let him have time to visit and he does need to work so we can pay the bills. He loves you and is very pleased with your progress and he wants so much for you to come home. You are strong and you get stronger each day. The nurses over here are great and they treat you very well. You have been very comfortable and they think you are just adorable. :) Now you are in Train 4 on the main floor with all the other patience who are waiting to come home. You have a Spanish room mate who is just cute as can be.
Thurs 04-27-06 Your doctor says you are doing well and your team still hopes to send you home on time. :) You are having a hard time sucking on a binki but mommy is working with you and you are getting better at it. It's important that you get your tongue working. They gave you a wedge today so that you can sleep better you really seem to like it. :)
Fri 04-28-06 You were awake when I came to see you today! :) You seemed to smile at me but you were not happy when they had to run some tests. :( I held you and you calmed right down. You are still having trouble with your binki but these things do take time and that's all you need. Gammy and Grumpa came to see you and they say you may come home next week! :)
Sat 04-29-06 You are such an Angel and you get stronger each day. You just love being held by daddy and he loves to hold you. You are sucking on your binki like a good girl! We are very proud of you! Your aunt Trish came to see you with Uncle Corey and your cousins Keagan and Riley. You barely woke up to say hello but that's ok, you need your rest. I think you knew they were there. :)
Sun 04-30-06 Mommy and Daddy came to spend time with you and hold you. You were a little cranky but you do calm down pretty fast with some holding. You didn't want your binki but that's ok because we take it one day at a time. Gammy came to stay with you because mommy and daddy will have to be in Olympia to get more things to our home here in Auburn.
Mon 05-01-06 Gammy is sitting with you and she says you are lots of fun to sit with. She loves to hold you and mommy is glad she cam be there since mommy can not. You are eating a little but it upsets your tummy and you throw it up so it's not much, you are still being fed through a tube so it's ok. They bumped up your volume today and so far you can tolerate it very well. You still suck on your binki and that is important and great. :) We are very proud of you.
Tues 05-02-06 You are doing good with your binki therapy and you are being fed 10 CC of formula. You need help but you do a great job. Daddy got to feed you today. :) Soon we will need to learn how to give you your medication so that we can continue to give it to you when you come home. They come in and put it in your tube. The nurses on this floor are quite nice and very busy but they come and take good care of your every 4 hours. We may get to bring you home Friday or Monday. Barbra and Karen are tow Nurse Practitioners who come see you Mostly it's Barbra who is on your case. She is quite nice and she just thinks you are the cutest. We even burp you now!
Wed 05-03-06 You took all 10 CC again! This is great! Gammy loves this time with you and she says you are doing just great! She tells us all about the things you do, like playing pat a cake and such. :) She bought a book to have some people sign it so that you can know a few people who took care of you. They do take great care of you my sweet. You are no longer on the stat machine 24 hours a day like you were but they are spot checking you. Once you settled in to a stats they have been happy. It took time for us to get used it but we trust the doctors.
Thurs 05-04-06 You had tests today so it was rough.. it makes me very sad when they come take your blood but I know they need to. You do calm down very fast and you go right back to sleep, we let you rest for the most part. You did have some binki time and again you did wonderful! We still hope to have you home tomorrow! Mommy learned how to give you your medication and how to place your feeding tube plus how to operate your home pump.
Fri 05-05-06 Gammy went home and I stayed with you, I learned how to make your formula. They were worried about some of your tests and you were having a hard time keeping your stats in your car seat. It was hard because your tummy has been hurting you. You were throwing everything you ate up. :( We will run tests on Monday to find out what is wrong. Though I am sad I understand and want you home healthy. I miss daddy very much bur he needs to work and he needs his rest. We will stay here as long as we need.
Sat 05-06-06 You feel a little better today but your tummy is still upset. I worry about your breathing to heavy but they tell me it's part of your tummy problem. They took you off the NG tube feeding and placed you back on I.V. till you can have your test. Daddy was here with us and you loved seeing him! :)
Sun 05-07-06 You seem very happy and bright eyed today, your tummy may feel better not being so full. Tomorrow you have an upper G.I. so that they can look inside your tummy and throat to see if there is something major. God sure has blessed you with strength my baby. I Love you so much. We ALL love you so much.
Mon 05-08-06 We went to the G.I. clinic downstairs and you had to swallow some fluid while they looked inside you with a machine. You were placed on a little platform and rotated while we held you and talked to you. We then had a 4 hour wait in the lobby and mommy was tired and still can not understand why we had to wait there instead of our room. We made it though and mommy thinks you would bottle feed after we figure out your tummy. I can not wait to have you home my sweet little girl. Barbra tells me you have reflux and you should out grow it as most babies do.
Tues 05-09-06 The gastro logy team will be in to look at you today and see what we need to change in your medicine and feeding. Karen tells me you will be having an ND tube, this is a feeding tube that goes in your upper intestine. This one is different in that mommy and daddy can not replace it if you pull it out since you need an X-Ray to see if it is in the right place. They will start you on a slow feed to see how you tolerate it. I pray this will work so you can eat and grow and come home.
Wed 05-10-6-06 They had to change your tube because your tummy was not able to handle things very well. You were still throwing up. Barbra is trying hard to get us home but she knows we understand. Karen came in and placed this tube way down inside you and hopefully it will work. :) I love you so much my baby, God is watching over you and everyone loves you so.
Thurs 05-11-06 Well sweetness we will be taking you home tomorrow! It's so exciting! You have reflux and they tell us it's quite common and you should out grow it, you seem to be tolerating your feed and that is the most important thing. You are a gassy baby but we have medication called simethicone that helps a great deal wit that other than those few items you are wonderful! We also got a lot of information on places that can help us help you to grow big and strong!
Fri 05-12-06 The day you came home. Oh my what a day, we were so happy to have you here where we could watch you grow and love you even more. We were sent some feeding things from a home healthcare place and we were sent some occupational information. We look forward to taking you to the places you need to go and helping you with everything you need. Our sweet little gift from God you will always know how very loved you are. You will have a happy life full of joy and everything we can give you will be yours. Your family loves you with deepest of love.

Love you baby Girl. PT 2


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