Tuesday, April 23, 2013

First 'Birthday' (1 Week!)

Day 2

In my excitement to post last night I failed to mention a few exciting milestones we reached last night! Karen and I were able to give Landon a bath for the first time and we were able to fold him in some of his own blankets. It is so fulfilling to get to do "dad" things with him, even if it is something as small as washing his hair and scrubbing his butt. We wrapped him in the softest, warmest blanket we could find afterwards, put on some lullaby music, and Karen rocked him to sleep. Everything felt so normal and wonderful. Moments like that make it easy to forget the beeping monitors and electric feeder pushing milk through his feeding tube. Alas, 7 o'clock arrived and we had to return him to the incubator for the nurse shift change.

Today, we celebrate Landon's first week of life. I have no idea where the time went. This first 'birthday' was celebrated by 2 full hours of holding our baby boy in his favorite elephant blanket. This is the longest we've had the chance to hold him so far and every second is cherished. The doctors are continuing to increase his milk intake at each feeding by 3 ml until he reaches 60 ml every 3 hours as long as he digests over 2/3 of his food. His 9 o'clock feeding was 51 ml, so he should transition to full feedings overnight tonight! This is great news and a real milestone. When he is on full feedings, Landon will have the 10% dextrose IV (which supplements his feed intake) removed from the PICC (peripherally inserted central catheter) in his left armpit. One less tube to get in mom and dad's way while we hold him!

Landon was visited by the infectious disease specialist today to assess whether he needed his acyclovir still. The blood samples taken on Thursday came back clean (hurray!) but she wanted to wait for a clean skin swab before taking him off the antiviral. We should find out the results of that test tomorrow. A speech therapist also assessed Landon's ability to suck and swallow today. Unfortunately, she could not elicit a suck response from him and when she pipetted milk into his mouth he choked instead of swallowed. We are so pleased with his progress so far but our greatest wish is to have him learn to suck. That would be a huge step toward going home without having to surgically place a feeding tube in his side (frequently called a G-Button). We would hate for him to have to undergo any surgeries but if that's what we have to do for him to be happy and healthy and HOME, we will do it.

Karen and I have been struggling to leave the hospital more and more each night. Tonight was particularly difficult. Our moments holding him are precious and the greatest minutes of our lives but they throw into sharp relief the emptiness of your arms without him. He fills a place in our hearts that is perfectly cut for him and causes physical pain to be away from him. We needed a few shared tears on the way home to recover tonight and I'm sure each ensuing night will be increasingly hard. I pray that we can find solace in his improvement and for patience in waiting for the day when we can bring him home for good.

I would also like to take this time to thank the talented doctors and nurses caring for my Little Goat. Everyone has been extremely compassionate and invested in his progress and the level of intelligence on display shows a real dedication to their field. It is evident that years of hard work have gone into the well-oiled machine that keeps Landon happy, healthy, and comfortable. They are all so generous with their time and have shown only kindness to our family, friends, Karen and myself.

We anticipate an exciting and blessed day tomorrow with our little man!

P.S. Karen and I are very uncomfortable asking for money from others as we understand that everyone faces hardships in life. However, we are realistic about our ability to pay for Landon's mounting hospital expenses and some of my unbelievable associates have set up a fund to assist us. If you feel inclined, we would be extremely grateful for any donation. Do not feel obligated in any way as your thoughts and prayers are more than we could have asked for. The fund can be found here:

Landon Shrader Family Fund

Thank you again for your generosity in whatever form it takes.

4 comments:

  1. Aidan was in NICU for 10 weeks. It was very difficult, but she was in such good hands... Take care.

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  2. My thoughts continue to be with you, Karen, and especially Landon. I too hope he learns to suck soon, that would be such a blessing! He is a precious gift from God and he will astound you every day I am sure. All of the best to you.

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  3. Trent, we were always proud of you! Your dedication to your precious family and faith are evidence that your strength, wisdom, character and spirit have only grown over the years! Our thoughts and prayers are with you, your wife and sweet little boy!!! Justin & Jamie Moline

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  4. I'm here from Imgur.
    Keep everyone updated and as a special educator, talk talk talk to people. It will help you build a strong family. Talk to the hospital and they usually have a list of parents' groups.
    You are caring people and doing the best. Don't forget that!

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