Monday, June 29, 2009

Luke is Seven Weeks Old!

Hi everyone. I just can't believe that Luke is seven weeks old today! I'm so glad we've made it this far. Part of me though, is sad. Sad that I've missed 7 weeks of cuddling, holding, and feeding. Sad that I need to put away all his premie clothes, and probably most of his newborn clothes that he has never gotten to wear. Sad that his nursery has everything in it except a baby. Sad that we're 7 weeks into a hospital stay, having not been home, and there's really no end in sight yet.
We do have to count our blessings. The biggest, obviously, is that we've cleared the first surgery. He is still in the recovery period, but progressing nicely on most fronts. We're thankful that his right leg has healed completely now instead of being swollen and purple. He now has two chicken legs instead of one chicken leg and one elephant leg (or, one daddy leg and one mommy leg, if you will). His kidneys continue to improve. He is peeing so much now that they took out his Foley catheter because they haven't needed to keep track of his exact urine output. They now just weigh his whole diaper. They like for his creatinine level (measure of kidney function) to be below 1.0, 0.5 is normal. He's wavered between 0.8 and 1.1 for the past several days. We are hearing some rumors about stopping dialysis in the next few days to see how he does. Then if that goes well, they will take out the dialysis catheter and we'll be done with that. We are so happy that we're no longer waiting to see if he'll regain full kidney function again, waiting to see if we'll have to do dialysis permanently. We now know that Luke will be off dialysis at some point, we're just waiting for that day to come, and we think it will be soon.
Once Luke gets off dialysis, that will make his abdomen less full, which will give his lungs more room to expand, which will allow him to breathe better. Over the last week or two, the doctors have put him on what's called Pressure Support Trials. During these trials, Luke initiates all of his breaths, and then his ventilator gives him an extra amount of support and oxygen volume for each breath. This essentially teaches him incrementally how to breathe on his own, moving towards getting him completely off ventilator support. These trials last from 30 minutes to 1 hour multiple times a day to allow him to rest and rely more heavily on the ventilator in between trials. Once Luke is off dialysis, we're expecting for him to do better and better on these trials and get off the ventilator quickly. Luke also got his chest drainage tube out this week. This was the tube that allowed all of the blood and yucky stuff to drain out. A wound specialist is working with him to insure that the site will heal properly and reduce scarring. Luke also got his stitches out from his incision site this week. Now he has a pink line down the center of his chest instead of big ugly black stitches. His swelling has reduced significantly, though he still has a double chin. He is slowly but surely starting to look like a normal baby and not the torn apart and sewn back together baby he was three weeks ago.
Some not so good news now. The doctors confirmed yesterday that Luke has an infection. It's not surprising. His nurse told us that pretty much all babies in the hospital for as long as Luke has been get an infection at some point. Thankfully, they put him on antibiotics before the infection was confirmed, so we have a pretty good start on treating the infection. This infection has caused his belly to become quite swollen, and caused some problems with his small intestine. He stopped digesting his milk, so it was just sitting there in his intestines. He threw it all up, and they've stopped feeding him yesterday and today to give his digestive system a chance to heal. This means that the medications that they've worked so hard to switch over from IV form to oral form now have to be switched back, so we've taken a step backwards on that front as well. His swollen belly has also made it tougher for him to breathe. As with all the previous problems, everything in his system is dependent upon everything else, so it's very frustrating that lots of things go wrong when one little thing isn't working right. The doctors aren't going to be very aggressive with working with Luke to get off the ventilator until we get a handle on this infection.
Also, not so good, is that Luke's heart rate has slowly but steadily risen over the past 3-4 days. They have put him on the medication called Amioderone which is supposed to keep the electrical impulses in his heart that tell it to beat regular. The medication has been successful on that front, but it has not been successful at lowering his heart rate and maintaining that lower heart rate. It's lowest point since he started this arrhythmia problem was in the high 160s. Today he's in the high 180s and low 190s. The doctors tell us that Luke's blood system is tolerating this fast heart rate very well. They expect that his heart will eventually heal over a period of months and the heart rate will slow down. They are giving him another medication called Esmelol to help this along, though it hasn't seemed to have much effect so far.
So we've had some good and some bad this week. This road we're on has smoothed out quite a bit, what's hard right now is just the length of the road. Most difficult for me I think are the nights. During pregnancy, the nighttime was when I would feel him kick the most. It was the time when I felt the most aware and the closest to him. Now the nights are when we're the farthest away from him, and I feel so bereft and lonely that it's hard to fall asleep. It's difficult to go in his room to put something away because it's just an strong reminder that he's not home. Highlight of the week though came on Saturday. We haven't gotten to hold him because he's connected with too many tubes and wires to move him out of bed. Saturday though, David and I got to take turns standing right against his bed and cradling Luke in our arms. It's was really close to holding him. Not the same, but really close.
We thank you to continue praying for us. Please pray for Luke's infection to heal quickly, and for his swollen belly to go down so he can breathe better and continue eating. Please pray that the medication will lower his heart rate, or that his heart will begin to heal on its own and his heart rate will lower. 190 is a scary number to see on that monitor. It makes my heart jump whenever I see it. Pray for David and I. We're extremely weary. It's very easy to get discouraged and to fall into despair. I'm not sleeping well. Thank you all for you concern, your prayers, and your words of encouragement. We love you, and hope that God blesses you as he has blessed us.

Rachael & David


  1. Rachel, you do not know me, but I am a friend of Marci and Clarissa. I just want you to know that baby Luke and your family have been in my prayers from the beginning. Luke will come into my thoughts at random times of the day and I will stop and say a prayer for him. I can only assume that at those moments God has put Luke on my heart for a reason. I feel so honored to be a prayer warrior for Luke and you. It is always good to hear good news about Luke. Hold strong in your faith and know that people all over are praying for your sweet boy. I look forward to the day when you post that Luke is going home.

    Aubrey Garcia

  2. The Unfailing Prayer to St. Anthony

    O Holy St. Anthony, gentlest of saints, your love for God and Charity for his creatures, made you worthy when on earth to possess miraculous powers

    Miracles waited on your word, which you were ever ready to speak for those in trouble or anxiety

    Encouraged by this thought, I implore of you to obtain for me the healing of young Luke and peace in the hearts of his parents Rachel and David

    The answer to my prayer may require a miracle. Even so, you are the Saint of Miracles

    O gentle and loving St. Anthony, whose heart was ever full of human sympathy, whisper my petition into the ears of the sweet infant Jesus who loved to be folded I your arms, and the gratitude of my heart will ever be yours

    Friend of a Friend in Jesus; May God watch over all of you and shower you with Blessings....