Saturday, August 30, 2008
Thursday, August 28, 2008
Wednesday, August 27, 2008
Monday, August 25, 2008
We also met with the genetic counselor and genetesis today. It was ok, I guess. We had hoped for more information on what his chromosomes mean, but there is really no way to predict anything. The most likely thing that could happen is learning disabilities. But to what extent is still a mystery. They were helpful in finding us information on groups and classes that we should get involved in right away. School for babies, as she put it. And she also referred us to a genetic counselor in Tacoma. They ordered some more testing to be done too.
Its kind of hard to think that my baby might not be 'normal'. All you want is this perfectly healthy child and for them to grow up normal and live a full life. I find myself going back and forth between 2 ways of thinking. One that he can live a full life no matter what his learning capabilities. And the other, where I find myself thinking that he might not be able to do so many things and that its just not fair. Its a confusing situation to be in and I know that it will all be ok no matter what the outcome.
I guess what I am praying for is that all of Lucas' problems will be his physical issues and that it will be taken care of by the time we come home. I know that God made my son just the way he is supposed to be and I will always love him no matter what. I just pray that he will grow up and live a full life and be happy.
Please, please continue to pray for Lucas. I don't think that I have ever believed in prayer as much as much as I do right now in my life. I know that it has worked for us in the past, but God has made a miracle in the child, and I know that without a shadow of a doubt. Thank you for all of your support!!
****And thanks for all the comments too! ;)
Saturday, August 23, 2008
Friday, August 22, 2008
We've made some progress! Progress is good, just in case you didn't know. ;) Yesterday they restarted feeding through Lucas' g-tube and things started going well. After not digesting any of the milk, they stopped and then increased the amount. That stimulated his stomach and organs and things actually started working. Today he was up to full feeds at 15cc's per hour. He was doing well and so they sent over a therapist to help start with oral feedings. We did one so far today with about 1cc through a pacifier with a little catheter through the nipple. He did really well with it, but his respiratory rate was a bit high as well as his heart rate. But for his first oral feeding he did great. So she'll be back again at 3 for another one and we'll get a plan for the weekend with feedings.
The doctor also came in to talk with me this morning. We were given the option of leaving here and going to a local hospital at home. But I told him that I wanted the best care, so either place was fine if he agreed. He felt that if something was to happen that they might not be equip to handle it and he may be sent back here. So staying here is the plan for a little while longer. We also discussed the genetic tests that were done. He said he couldn't tell me the meaning, but there was a missing chromosome and a double chromosome. Hopefully the genetesis can research it and tell us more. And lastly they plan on doing another upper GI to see if his bowels were working correctly. That is happening at 330 today.
So overall today has been pretty good and I really look forward to the feedings. I am so excited that he is tolerating them so well and I just really can't wait to nurse! :) who wishes for that?!
Oh, he was weaned off of any air last night too! so the cords are gone from his face. And he is getting rid of that retched IV today too! YEA!! less tangles when I hold my baby!
Last night we went home for the evening to hang out with the fam. We had pizza and played some games. Joshua was too cute, so here are a few pictures of my big boy!!
Wednesday, August 20, 2008
Today really felt like the first day of motherhood with Lucas. I was so giddy to hold him and stare at him and really feel like him mom. I am so thrilled and blessed to have this little miracle boy in my arms and I can't wait for the future!
We stayed home last night to spend some time with Joshua and it was just great for everyone. I got some mommy time, Josh got some daddy time, and grandma Kris got a little well needed break! :) Mom has just been so wonderful these last couple of weeks. I don't think that I could have gotten through all of this without her. She helped me emotional, physically and took care of my little man, Joshua. I am so thankful for her help!
So I'll hopefully have even more great news tomorrow. But thanks for all the continued prayers!!
Tuesday, August 19, 2008
Sadly today Lucas had a big day and we missed it. He had a MRI and the plan was to extubate him and to feed. The nurse told me that she would call so that I had an idea of when things were to happen. Around 4pm they went for the MRI and I got a call from another nurse at 5 telling me they were back. Just around 9pm the phone rang again. I wasn't too scared because if it were an emergency, they would use the pager that they gave us. The Dr on call tonight was calling me to tell me that they took Lucas off the ventilator!!! He was doing great and breathing well on his own!! I was so thrilled and so sad not to be there. I started crying and thanked her for calling. What an amazing moment! She also said that they were going to try feeding him a bit later too. It will be breast milk and it will be through his G tube in his stomach. What a day!
So tomorrow there will be a lot of pictures, you can count on that!! I can't wait to get back there and hold him whenever I want!!! It was so good for us to leave, and now I can't wait to get back there!!!!
Come back for pics!
Saturday, August 16, 2008
I obviously have some time tonight to write. Its actually kind of nice. I am able to sit up and type! I just got back from seeing the little man. He had his transfusion and is doing good. They are concerned about the size of the esophagus, and they took some x-rays earlier to see what is happening. I just had a blast being able to hang out with Lucas and take some more pictures that I would love to share.
Well, here we are. We've made it to our one week mark. Lucas is doing pretty good so far. He is strong, he is beautiful and he is loved.
Yesterday I was discharged from the hospital, finally. After having a spinal headache that just wouldn't go away, I was diagnosed with post pardom pre-eclampsia. Go figure. I have been really healthy this whole pregnancy, and afterwards I get sick. My pressure went down after a night of magnesium and blood pressure meds. The doctor knew how badly I wanted out of there, so she let me go. I am feeling pretty good besides being weak. After a full week of being in bed and not walking, its taking some time to get used to it again.
Yesterday morning Lucas had surgery. It was to repair the hole in his diaphragm and to prevent the hernia from coming back. They put him on the ventilator to keep him from exerting himself and he is still on it today. The surgery went well and they were able to get the stomach where it should be and also put in a feeding tube in. Today they are planning on giving him a blood transfusion, since the surgery left him a little anemic. His esophagus is also a little big after surgery, so they are keeping an eye on that too.
I am hoping that I will be able to hold him soon. I haven't since Wednesday afternoon and its just killing me. Its a strange feeling. Being pregnant for months and then giving birth and not holding your child. Its almost like he's not mine. Its really confusing. But when I see him, it all changes. I think that last night was really good and really bad. I went home because I needed to see Joshua and to just get things together. It was great to spend some time with Joshua and be in my own bed. But it was so hard to come home without Lucas. To see his crib empty was just terrible. Knowing that he was so far away and I was at home relaxing was just... the pits, I guess. Getting here today was hard too. Not knowing what lies ahead is so hard, especially for me. If you know me, you know that I am a planner and an organizer, and this has been a real curve ball. But once I got here, I relaxed a bit and I am trying to settle in.
I am hoping that writing this helps me deal with things a bit. I know that people go through this every day. People deal with things so much worse. But with all the emotions that my body is dealing with and just adjusting, I am quite a wreck. I hope that those of you who are reading this pray for us. Please pray that Lucas heals, I heal and we all are together soon.
I will keep updating here and writing out my feelings. Feel free to email me or comment. I really appreciate it. And if you want to come and see the little guy, we should be able to figure it out!
Thursday, August 14, 2008
So here is my little update for the day. Not too much new has happened. Yesterday, the transport team from Children's Hosiptal in Seattle came and took Lucas. He needs a procedure done that will fix his diaphram and stomach so that he can finally eat. They are still figuring out which way would be best, but he is now in the best care. Josh went with him yesterday and has been there since. They have a room for us to stay in while Lucas is in their care.
As for me, I had planned on getting discharged today, but my blood pressure is running high and I am still having those dredded headaches. I am getting up to use the bathrooom, but that is about it. I did shower though, YEA!!! My doctor is back from her European vacation and came in today. She is concerned about how i am feeling, so we'll see howit goes this afternoon. I can't really walk much, but all I want to do is see my children. I am missing Joshua so badly and I just want to hold my new baby and never let him go. I know that people deal with worse situations and I am trying to remember that. He is breathing, I am breathing and we'll be together soon. But it is so hard to know that he is so far away without his momma.
As far as diagnosis goes, we are still waiting. The dr's and genetesis' are talking and comparing notes, trying to figure everything out. We do know that the hernia is a hiatal hernia and not the dyphragmatic that they thought. His heart and lungs are still stable too. We are still in need of constant prayers. This has been so hard, and will be for some time. We are happy to live in a place where he can have the best facilities, Dr's and nurses.
I am without a cell phone too. Josh has mine if you need to contact us. Thanks!
Tuesday, August 12, 2008
Sunday, August 3, 2008
Our little guy