February 20, 2013

UPDATE (2/20/13)
Progress. Beckett continues to make steady progress. Yesterday they weaned his methadone. He is now only getting methadone once a day. We are getting so close. He only has about five weans left until he is completely off pain medications! Praise the Lord. They typically wean every 48-72 hours, so praying he will be done within the next two weeks. They also weaned his Vapotherm today. He is now on 2.5 liters of flow and tolerating it beautifully! He has not really required extra oxygen for almost two days, and was sating high for most of the day today. Beckett will move to a nasal cannula when he reaches 1 liter so he has 2-3 weans left on this. We cannot wait, as the Vapotherm is pretty heavy and clunky to maneuver, not to mention this would be one step closer to getting off oxygen all together. They had also increased the volume of Beckett’s feedings on Monday because he was not gaining weight quite like they wanted him to, and he still lost weight that night. However, last night he gained about 4.5 ounces and another 2 tonight. He now weighs roughly 7 lbs 12 oz. Yeah Beckett! The cardiologist called today and was asking when they are going to begin trying to feed him by mouth. So, the neonatologist is checking with speech pathology to determine a plan. It may be a little bit still as they are pretty cautious, but we are hopefully getting closer to trying to feed Beckett with a bottle.
Beckett’s surgical incision is healing so nicely, and looks really cool! ☺ He did always have a little spot at the top that was taking longer to heal due to his chin resting on it. Yesterday the area around the scab was a little redder than normal and looked to have a little puss on one side. The scab fell off yesterday afternoon and a stitch was actually kind of hanging out like a piece of thread. It must have just been working its way out all this time. Well, today the nurse practitioner that works with the surgeon came to look at it. She clipped the stitch, squeezed out a little drainage and that was that. They have been cleaning it, and by the time I left tonight the hole had actually already closed over. The way the body heals is incredible.
Beckett has been doing really well with his therapies as well. He typically sees either the PT or the OT every day and some days both. Each day he tolerates a little more and goes longer and longer without needing his pacifier (an item which he has become extremely attached to). He is getting looser and his range of motion is increasing, especially his right arm, which didn’t straighten as much due to his PICC line. I have also been learning the stretches so we can work on them throughout the day. He is so cooperative.
While Beckett has been making good progress, he has been a little restless the last two days. Beckett truly is a good baby and is pretty content most of the time. The nurses talk about how he has such a calm, sweet demeanor. He will lie in his bed for an hour just looking around without even needing attention. The last two days however he has been squirmy in his sleep, crying more frequently, and just seems unsettled. He has required more consoling, and is not his typical self of being easily comforted. He may just be having a bad day. After all, we all have them. I pray he is not in pain. We think he might be getting a little spoiled, loving to be held like all babies do. He seems to be so much happier in someone’s arms, which is perfectly fine with me! I could hold him forever. We are praying it is that simple and that tomorrow will be a better day.
A funny story from today. I came in this morning and Beckett was clean, smelling good, and his bed was made in new blankets from home. One of his primary nurses, Jaime, said she had been in there an hour and a half this morning cleaning him up. One of the therapists had been changing his diaper when he began pooping everywhere. Then, when they started cleaning that up, he started peeing everywhere, including all over his body and face. What a mess! They had to change out his entire bed. Needless to say, he earned a very thorough bath. I have told him to be nice to those nurses! I can laugh because I didn’t have to clean it up.
Sitting in a hospital room all day is long, hard, and tiring, and restful sleep is hard to come by. As we know you are continuing to pray for Beckett’s complete healing, I ask for prayer for both Jonny and I as we sit with Beckett every day, as well as for our families who are constantly driving down to be with us on top of their normal life demands. Thank you for diligently praying for Beckett and our family as we travel this road.
We also want to thank everyone who has helped give a place to lay our heads at night. This includes everyone who offered us a room in their home, paid for nights in a hotel, connected us with family or friends in the area, etc. We have been blessed with a house to stay in for the remainder of the time we are here that is just 15 minutes from the hospital. It is such a huge blessing to have a place that feels a little more like home than a hotel room. It is also a huge relief of stress as we weren’t sure what we were going to do four nights out of the week when we didn’t get housing from the hospital, and I am not yet ready to go home. So we are sending out a huge thank you to all those who have helped. We are eternally grateful and truly blessed!

— with Jonathan Rupp at st Vincents womens hospital.

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