Thursday, February 2, 2012

Update: Night before Surgery #1

I have been trying so hard to finally get around to this. It has been absolute madness and truly my only focus has been to be by Dalton's side as much as possible. Everything has happened so quickly that we are really just trying to get our bearings. I'll start off with the day after he was born, right where I left off.
Jonathan and I woke up in the hospital and got ready as quickly as we could to go down to the NICU. Obviously I was not moving as quickly as I wish I could have been. I was in so much pain but I knew once I got down to see him again, everything would be okay. We went down to spend some time with him and it was amazing. Just looking at him. I have seriously been in such awe that we created something so beautiful. So we stared, and stared, and stared. Our families arrived to finally meet him.  They were ecstatic and we were definitely the proudest parents ever! My body started to tell me to slow down and lay down so I went back to the hospital room. While we were back in the room letting Dalton and Mommy rest we got a phone call from the neonatologist. They wanted us to come down for the ECHO on his heart. We went back down and they confirmed what they had suspected in utero. The left side of Dalton's heart is a lot smaller that the right side. It is working hard and the main valve to get into his heart is very narrow. Right now he is still breathing because of a fetal valve (PDA) that God gives us all, but eventually closes after 72 hours. They explained that they could put him on medicine to temporarily keep that valve open until surgery. He needs a coarctation of his aortic valve. They also discovered a ASD and a bicuspet valve. Things we are going to have to have taken care of when he is a little bit older. But right now the main concern is fixing that valve so when the PDA closes he can continue pumping blood. Like I said, these were all things we expected but I guess we just were not prepared when they told us they were going to transport him to another hospital as soon as possible.
Wait a second! I am not even fully recovered yet and you are telling me I have to stay in one hospital while my 18 hour old baby goes to a new one? I thought they were crazy. They told Jonathan that he could go with him but I needed to stay for one more night of recovery. After that everything happened so fast. Before I knew it a transport team showed up with 4 people and this giant cart on wheels with all these monitors attached. When they unhooked him from his lines they asked if I wanted to hold him for a minute before he left. I sat down and prayed over my little boy so hard and told him how much I wanted to be with him. They took him from my arms and asked me to start signing papers. I watched as they placed him in that cart looking thing and strapped him in. Jonathan ran over to kiss me good bye and before I knew it they were rolling out the door. The most important thing in my life was leaving me and I had only held him for a minute. I knew that Egelston was the best place for him but I selfishly wanted to be like all the other new Mom's in the hospital. The ones who got to keep their babies in rooms and change their diapers! I wanted a poopie diaper to change! And just like that, he was gone, I was alone. Without my husband or my son and only a day after one of the most physically painful things I have ever done. My family stayed with me at the hospital for a few hours and Brianna even slept on the cot in my room. Bet she wasn't expecting those 3 a.m. pumpings. Jonathan was able to come back for an hour during a shift change at Egelston, so it was nice to get to say good night to him.
The next morning (Wednesday) I was first to be discharged after some serious begging. Jonathan came and picked me up and we went to the hospital to be with Dalton. Just Jonathan and I went down and spent the entire day with him. Was I exhausted and in tons of pain? Yes. Did it matter? Absolutely not. I got to be by my son's side the whole day and it was magical, we even got to read him some Bible stories.. We are still unable to hold him and it will probably be that way for another week because of certain IV lines. We met with all the different doctors and geneticists at the hospital. Learning a whole new staff was hard because we were so used to all of our Northside doctors. Luckily, everyone has been wonderful and very helpful. I even got to change a diaper. I was so excited! We just tried to let him rest as much as possible because he does not like having tests done and that is really all they have been doing to him. He is on room oxygen which is a huge accomplishment! They are feeding him lipids (fats) and sugar water to keep his belly full. They will attempt tube feedings when his surgery is over. Today was kind of the same deal. We went to the hospital to sit in on his rounds at 6 am. Then we did more sitting by his bed, and honestly I do not want to be anywhere else. The thing that is making this all so difficult is that I do not feel 100% and I wish I did. I am still on lots of medicines and very uncomfortable and I pray that God starts to heal me so I can give Dalton my all.
Today something awesome did happen. He was having a little tantrum (apparently he likes to do that when he gets unswaddled) .The nurse was soothing him as I came back to his pod, he heard my voice and stopped! He was completely wide awake, looking around, checking everything out. It was the first time we had seen him keep his eyes open for a period of time. I called Jonathan so fast and he came running up from the cafeteria.
Jonathan and I were talking about how with all the craziness of trying to be with him as much as possible and gather all the information we can from the Doctors we haven't had as much time as we would like to pray. I know you can pray anywhere, anytime but our minds have just been so full of worry with all that has been going on around us. That's why God put a friend like Kalee into my life. She started a prayer vigil to be with Dalton from midnight tonight until midnight tomorrow. Every 15 minutes someone will be praying for our little miracle baby. Some of the times to sign up to pray have even doubled and tripled. We are so moved by the outpouring of love from everyone. It is what is keeping us going and giving us the strength to move up that mountain. Our son will be covered in prayers and mostly from people we don't even know! It is amazing how God is using Dalton to bring so many people to their knees before Him. He is defying the odds and tomorrow morning at 7:00 a.m. he will continue to do so.
















Thank you so much! God bless you all.

47 comments:

  1. Praying for Dalton and your family!

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  2. Kara , he is so beautiful & I think about you guys all the time, the prayer vigil is so cool and look at all the people who already love the little cute man Dalton... so i will be thinking of you, Jonathan & of course the little miracle Dalton, God be with you all & lots of <3 <3 <3...

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  3. Prays for sweet Dalton!

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  4. Kara and Jonathan,

    You and Dalton have been in my prayers and on my heart since Katherine told me about Dalton. I am praying without ceasing for more miracles from our awesome and able Heavenly Father. I have to tell you, Dalton is so beautiful and I know the Lord has fully equipped you to be amazing parents to Dalton. Thank you for the update and for sharing the beautiful pictures! Continue to stay strong and know that you and precious Dalton are covered in prayer and are being continuously lifted up. Praying for strength, healing and continued blessings.

    Kelly Ballard

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  5. Praying for you guys! He will be in good hands tomorrow. Please keep us updated!!!

    Thanks

    Jen

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  6. such a precious little boy. We will be praying all the way -- though.

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  7. What an amazing journey already, and the best is yet to come. I will be praying for Dalton, for you, your husband, and your family as you continue to walk through the days with the Lord going before you always.

    Alicia*,
    a friend of Miriam H.

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  8. Sending all our love and prayers to you all. Dalton is absolutely beautiful!! Glenda - you are THE most beautiful grandmama!! Kara - you are one awesome young lady!

    Love to everybody,
    Cousin Jan and Hubert

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  9. We are PRAYING! I am so happy you got to change a poopie! I pray that God lays His healing hands on that precious boy tomorrow. We will be praying for the doctors and you and Jonathan as well.

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  10. Kara we have never met Katie is my Niece. I want you to know that we are praying for you and your little angel. You are an inspiration to all of us. God has his hands on all of you.

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  11. I do not personally know you but I have been praying for sweet Dalton. I will be doing so throughout the day tomorrow. May God bless the doctors with healing hands. May He give you peace and surround you with love as you wait.

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  12. Praying for you and your family and that baby Dalton has a smooth successful surgery!! Jessie Lathem

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  13. I'm not sure if you're at Choa, but if you are - know that your sweet Dalton is in the best hands ever. Our son had coarctation of the aorta as well as a unicuspid aortic valve and had surgery at 5 days old, 6 months ago. He is doing well - but I SO remember being so frustrated at how I needed to heal so I could spend more time with my baby. I will be praying for you and for surgery to go well!!!

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  14. Praying for your sweet Dalton!

    Brittny**friend of Trista and Joey

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  15. thinking about you a lot! keeping you in my prayers and so are the kids. will pray for all the doctors, nurses and everyone else involved in Dalton's surgery. Sandra

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  16. I think I found your blog through Hope for Hallie - but I've been checking it whenever I can. I have been praying and thinking about your family as much as I can. I have 3 sons of my own (7, 2 and 7 months) and while none of them have Trisomy... they've each (well the 1 and 3) have had their issues. The 7 year old was 2 months early and I couldn't hold him for awhile. That is hard. My heart goes out to you for that. My last and most "healthy" pregnancy (first 2 I had pre-eclampsia and delivered early) ended up having severe heart failure due to ALCAPA at 11 weeks. He had emergency open heart surgery and it was a long and stressful recovery. He was on heart/lung bypass (ECMO) for 6 days and open chest for 10. He almost had a heart transplant. We were in the hospital for a month and 4 months later I've finally weaned him of his feeding tube! Through the grace of God he now has a heart that functions within "normal" ranges. They told me that it would probably happen within 2-3 years w/o medication... 5 months after his surgery he is being weaned of some of the medications already! God can do miraculous things. Keep up your faith. You are one amazing mommy (and daddy!).

    Oh wait... duh, I must have heard from you through Becca! I follow her blog too. I don't know how you all do it right after having the baby. Amazing.

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  17. North Carolina is praying for dear sweet Dalton!

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  18. Our family is praying for your sweet boy. We've been following your story, and although you don't know us just know you have a team in NY praying for Dalton's surgery and recovery. You are in incredible family with incredible strength, faith and love. Dalton is such a lucky boy. xo

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  19. Dalton is in the Lord's hand and He will see Dalton through. My prayer if that the family be ready for their many blessings that God has stored upon them through their child. Remember, God gives special children to special people......You both are the chosen parents!

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  20. Been praying daily for you guys.... God has big plans for your little man!!!

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  21. parying for your family.i hope dalton's surgury is succesful.Dalton is a beautiful baby.

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  22. Arizona is praying for Dalton....<3

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  23. Praying for sweet Dalton! He has the most precious little face, what a sweetheart! Egleston is the best place you all could be at. Our son had open heart surgery there 2 1/2 years ago. They are fantastic there. I'll be thinking of you all tomorrow and praying for great things! Stay strong!!

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  24. Many prayers being sent from Ohio. God bless you<3 Marge Price Newark, Ohio

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  25. Families like yours show what true love and devotion are all about. I do not know you personally but I came across your blog through a friend of mine. After reading your story, you and your loved ones become an inspiration to me. God Bless your sweet angel! My thoughts and prayers are with you!

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  26. What an amazing family with one amazing little man. Many prayers are coming your way from California. It is my blessing to be able to pray for you and Dalton.

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  27. WOW, WOW, WOW! I have been following your story from California and have been praying everyday for your family and Dalton. I will continue to pray over your family. God Bless!

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  28. Continuing to send prayers up from WV for you, Jonathan and your very precious blessing...Dalton. Dalton is one lucky little boy to have such amazing parents! May God grant you all strength, healing, comfort and peace! God Bless You!!!

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  29. Praying for your little man Dalton!

    Heather--sent by Trista!!

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  30. I'm praying for all of you today!

    So be strong and courageous! Do not be afraid and do not panic before them. For the LORD your God will personally go ahead of you. He will neither fail you nor abandon you.” (Deuteronomy 31:6 NLT)

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  31. I've been praying for you for months, ever since my son and daughter-in-law (James and Mary Jane) told me about your situation. Please know that I'm lifting you up, and especially Dalton, now as they operate on that precious little heart. Gail Brent

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  32. Praying for Dalton, your entire family and the medical staff that will touch the life of your beautiful boy. Praying now, at 7:15 AM knowing his procedure is just beginning. Blessings to you all. Lisa Walker, Alpharetta

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  33. We have been praying for Dalton and for you guys this morning and also for the doctors as they operate on precious baby Dalton.
    The Kellers

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  34. Praying non-stop for you, sweet Dalton. You and your parents are so inspirational. You have the best family and God is watching over you! Stay strong, sweet boy...we all love you very much! Xoxo, Kat

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  35. Sending up many prayers today for your precious boy!

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  36. praying for Dalton and your family from Savannah!

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  37. I'll be praying all day for little Dalton! Your story has been such a blessing to me (as well as Kalee's) and have really given me comfort as my own child works through some medical issues. God could not have pick two better people to be Dalton's parents. Thank you so much for sharing his story.

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  38. Prayers for your sweet boy from Indiana!! God Bless him, your family, and every doctor and nurse who are caring for him!!

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  39. Kara and Jonathan, you're so strong. The Damons are praying for you and Dalton!

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  40. I can't begin to know what it is like for you to go through this, but I know that the strength of the Lord can get you through.I was told last week and i hope it can bring you some encouragement "Finally, be strong in the Lord and in his mighty power." Ephesians 6:10

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  41. In case someone hasn't told you in the past 5 minutes, you are doing everything perfectly! :) Lots of prayers are going up constantly for your sweet baby, for you, your husband, and entire family. I hope you are feeling comfort from that.

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  42. Praying for that sweet boy today. These pictures are just precious....my favorite is the one with his finger up his nose. He even has a "smug" little grin on his face...such a boy in every way!! It is amazing what your body can do when you push it, but you be careful and make sure you don't overdo it....mama has a long race to run and Dalton needs you to be healthy too. After I read your post I expected to see you looking a little worn out...but no! You look so fabulous and glowing like a proud mom does! Congratulations and thanks for keeping us posted. Many, many prayers headed your way today!!!

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  43. They say life gives you what you can handle... You two seem to be an amazingly strong couple! As you know, the power of prayer is miraculous! I guarantee Dalton will make it through. Grow up in a loving family, and one day will be amazed to see how special and loved he is and how many people he touched at such a young age. Thoughts and prayers are with you <3

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  44. You stay in our hearts and prayers! Your pictures and words are inspiring. Dalton is so lucky to have such a wonderful and amazing family! Lots of love...and prayers! Alicia

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  45. Rachel Infante (Sarah Mokotoff's sister)February 3, 2012 at 8:44 PM

    Kara and Jonathan,
    My sister, Sarah, just told me about Dalton and words cannot express how my heart goes out to you both and your family. Our prayers will constanly be with you for strength and Dalton for miracles. He will be your greatest love and will teach you many things. He's lucky to have such strong and wonderful parents. Our daughter, Mia, had 2 open heart surgeries in her first 8months at Egleston for DORV and VSD. While it's different than what Dalton has we do understand the pain of watching your little one undergo that. If you have any questions about doctors or anything while there please ask Sarah for our contact and don't hesitate to ask. Sending millions of prayers your way all times of day!
    Rachel Infante

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  46. Kerry and Triston / TequestaMarch 17, 2012 at 10:35 PM

    Hi Kara,
    My old singing partner.... I haven't seen you in years, but I see your parents now and then around town and just today as a matter of fact. They filled me in a bit on your being married and your new beautiful son. I can't tell you how it makes me feel to see the woman you have become and this page alone says so much. God gives us all his path for us and you know he only entrusts his most special souls to those he treasures. That's why he made you and Jonathan Dalton's parents. He must have known you would take such special care of him. Blessing and prayers to all of you. I hope you are singing to him daily so he can hear his mommy's sweet voice..he is precious...lots of love...Kerry and Triston..

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