Ramsey had to remain at 45 ml today for his bottle feeding. He had seemed to tire so much from the slow-flow nipple so we tried the regular flow but it was a bit too fast for him. Ultimately, he left 15 ml in his first bottle. During his 2nd bottle, he cried so much he only drank 20 ml. This continued until his 9 pm feeding when he finally drank the whole bottle! I think he was dealing with a few problems today that just made him not want to eat; he has thrush, he was gassy and he had reflux.
I hope this isn't a sign of things to come! 45 ml is right around 1.5 ounces and I was told that this is the point where problems can arise. It might be good that he knows when to quit, even if it's sooner than what we want him to so that he doesn't aspirate. So much for my 4 day countdown to 65 ml! I guess this is why you never know just how long it will take till discharge.
We will go home with a monitor which will be a great relief to us. At least then we will know if there are any problems. They will also do a car seat test to see how well he does in the seated position for the drive home. When his oxygen dropped the other night, he was actually in his bouncy seat.
Ramsey had his weekly bloodwork early this morning and the billirubin is finally lower! I need to see how far we have to go to be in the normal range but I am glad that we are finally heading in the right direction.
The Alpha-1 antitrypsin test was just outside of the normal range on the higher end of the scale. I haven't discussed it yet with intestinal care, but I've been told that if there were a problem, it would have been on the lower range. So it appears we don't need to be concerned about that.
Monday, February 28, 2011
Sunday, February 27, 2011
Sunday - Day 46
Ramsey's oxygen was removed early this morning. He took his bottles well! If he keeps it up we should be at our goal in just 4 days!!
Sorry it has been so long since I posted photos. I will work on some new ones of Ramsey this week. The first two, below, were taken today and that is why the nasal canula is still there. These are some more "firsts" as family and friends get to hold Ramsey in their arms.
Sorry it has been so long since I posted photos. I will work on some new ones of Ramsey this week. The first two, below, were taken today and that is why the nasal canula is still there. These are some more "firsts" as family and friends get to hold Ramsey in their arms.
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| Pappy Razza and Ramsey |
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| Aunt Dina and Ramsey |
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| Aunt Donna and Ramsey |
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| Uncle Alan and Ramsey |
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| Alan, Elaine, Denise and Ramsey |
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| Cathy, a loyal blog follower and friend with Ramsey |
Sunday Morning
Based on last night's X-Ray, Ramsey had a little extra fluid, but not much as he had during his stay in the NICU. Today, they will wean him back off the oxygen. Tomorrow, they will do an X-Ray to make sure the lasix have done their job. Apparently once he's 2-3 months old, we shouldn't have to worry about this happening again.
Today they will increase his bottle to 45 ml.
Today they will increase his bottle to 45 ml.
Saturday, February 26, 2011
Boring is Good
In the hospital world, we've come to learn that boring is good. Ramsey hasn't learned that yet, and tonight he decided to shake things up a bit. His oxygen dropped to around 85, so they put the nasal canula back in and did an X-Ray. The X-Ray showed that he is retaining fluid so they decided to give him lasix again. This is nothing new, we experienced this in the NICU, still it's too bad that we had to experience it again at this stage. This type of incident makes the thought of taking him home a bit unnerving because there were no signs of problems, except for the numbers on the monitors.
He took 40 ml for each bottle today. He handled it well, aside from tiring a bit.
He took 40 ml for each bottle today. He handled it well, aside from tiring a bit.
Friday, February 25, 2011
Friday Night
Ramsey's bottle was increased by 5 ml for a total of 35 ml. This allowed his bolus to be reduced to 30 ml. He took each of his bottles well, except for one of the first ones; I tried to burp him halfway through and he lost all interest in finishing it. It took awhile, but he eventually drank it all. It's possible that he could reach a plateau when it comes to the bottle...I hope not! I pray he can reach his goal of 65 ml and gain the weight he needs in order to go home!
Thursday, February 24, 2011
Thursday Night
Ramsey had a great day. He is taking 30 ml by bottle and 30 by bolus. His weight was down last night so they started fortifying his milk to add calories. Hopefully we will move up to 40 ml tomorrow!
Wednesday, February 23, 2011
Wednesday Update - Day 42
Ramsey is doing surprisingly well with his feedings. Every three hours he received 20 ml by bottle followed by 45 ml by through his NG tube. Speech and OT supervised the first two, but I was able to offer the rest on my own. It was discovered today that his tube was in his intestines instead of his stomach so they put a new one into the stomach.
His billirubin is steady...not any worse but not any better. To clarify on the status of the liver, it is fine in that it is not permanently damaged, but it is currently affected by the cholestasis. Cholestasis is any condition in which the flow of bile from the liver is blocked. They have done some blood work to determine the cause of this. So far, they haven't found the exact cause- it's likely that it's from the TPN, but to be safe they are doing blood work tomorrow for something called alpha-1 antitrypsin deficiency. Alpha-1 antitrypsin deficiency is an inherited disorder that can cause lung disease in adults and liver disease in adults and children. I'm not aware of anyone else in our families that might suffer from this and I suspect that the test is being done just to cover all the bases.
Today I talked with a woman from the patient rep. department about our experience with the fellow the day Ramsey was born. The way Ramsey's condition was presented to us that day was completely inappropriate. We understood how serious things were, but being told that we could let him "die in our arms at West Penn or alone at Children's" showed no compassion and was unprofessional. Although I had already discussed it with some of the Children's Hospital NICU staff, I felt I needed to file a formal complaint. I hope that the fellow has learned something from the experience because I would never want anyone to go through what we did. What if we, or someone else in a similar position, would have chosen the first option? If we had, Ramsey would not be with us today, 42 days later, doing exceptionally well. Also, I think Children's needs to know about the incident because they don't deserve to be judged based on the fellow's behavior. With the exception of her, we have had nothing but praise for the hospital and the care Ramsey has received!
His billirubin is steady...not any worse but not any better. To clarify on the status of the liver, it is fine in that it is not permanently damaged, but it is currently affected by the cholestasis. Cholestasis is any condition in which the flow of bile from the liver is blocked. They have done some blood work to determine the cause of this. So far, they haven't found the exact cause- it's likely that it's from the TPN, but to be safe they are doing blood work tomorrow for something called alpha-1 antitrypsin deficiency. Alpha-1 antitrypsin deficiency is an inherited disorder that can cause lung disease in adults and liver disease in adults and children. I'm not aware of anyone else in our families that might suffer from this and I suspect that the test is being done just to cover all the bases.
Today I talked with a woman from the patient rep. department about our experience with the fellow the day Ramsey was born. The way Ramsey's condition was presented to us that day was completely inappropriate. We understood how serious things were, but being told that we could let him "die in our arms at West Penn or alone at Children's" showed no compassion and was unprofessional. Although I had already discussed it with some of the Children's Hospital NICU staff, I felt I needed to file a formal complaint. I hope that the fellow has learned something from the experience because I would never want anyone to go through what we did. What if we, or someone else in a similar position, would have chosen the first option? If we had, Ramsey would not be with us today, 42 days later, doing exceptionally well. Also, I think Children's needs to know about the incident because they don't deserve to be judged based on the fellow's behavior. With the exception of her, we have had nothing but praise for the hospital and the care Ramsey has received!
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