The title says it all. From the moment I got there until the moment I left was non-stop. I was happy to see the nurse we had after the experience I had yesterday. We were told the nurses would be more consistent, and I know we will have the same day/night nurses tomorrow that we had today.
Yesterday, one of the nurses was cleaning your IV and making sure that it was still good (even though you weren't getting any fluids through it) and she called the other nurse over because she thought it was leaking. The nurse that was training her checked it and said it wasn't leaking, that the tape would be wet if it was. Well, when I came in this morning, the nurse said they took out the IV last night because it was leaking. Awesome. Anyway, after the nurse told me about it, we did your care and she saw on the foot that had the IV a bump. She had the doctor check it out because it felt hard. The doctor said that it may be a pimple, or it may be an infection. She didn't know, but she wanted to keep an eye on it. She said that if you kept bradying, that she would get blood work done to rule out possible infection (they sent out a culture today). She also ordered some medicine to put on it to be proactive.
The doctor stayed for a while and said that last night you ended up having an ultrasound of your brain for a baseline to compare with tomorrow mornings ultrasound. This made daddy feel better.
You had to get tapped this morning, and when the doctor did it, she could only get 6 cc's when they usually take out 10 cc's. She said that she felt resistance at the end, so she stopped and wanted an ultrasound to make sure the catheter was still in the ventricle. She said that next time that you are tapped, neurosurgery will do it. When the ultrasound came back, the catheter was still in the correct place. She saved your CSF to make sure that neurosurgery didn't want to send it away for anything. When she spoke with them, they said to toss it.
During the morning/early afternoon, you kept bradying and desating. Some of the episodes were quick, but then others needed stimulation. You had two clusters of brady's while I was in the room, one of which was very scary for me. Since this kept happening, they decided to weight adjust your caffeine since you are now 3 lb, 2 oz to see if that would help, and if not, they would give you an extra dose of caffeine. They gave you the caffeine at 1 pm and you still brady'd quite a few times. I don't think they ever gave you the extra dose because of your blood work results.
You had an eye exam this afternoon, and they said that your eyes were still immature, but they did not see any disease or anything which is good. They said that they would repeat the exam in 2 weeks to see if your eyes have matured anymore.
When I came back from lunch, the nurse said that you had spit up. They had an X-Ray done to see what was going on with your belly since it grew 2 cm while she was there. The nurse told me that the X-Ray showed air and stool. They stopped your feeds to help your belly calm down. Just when you had reached full feeds of 25 ml! They decided to give you a suppository because although you have been going to the bathroom almost every diaper change, they wanted you to go even more. I changed your next diaper and although you didn't go anymore, I got nervous because I saw this clear pellet in there. The nurse said that was the suppository and I was happy to hear that because you didn't need anything else going wrong! They will do another X-Ray tomorrow morning and reassess whether to start your feeds again.
The results of the blood work came back and your hemoglobin was 8.5 so they decided to do another blood transfusion. They put an IV in your hand this time for the blood transfusion. After your blood transfusion, they will give you fluids since you are not having any milk right now. Hopefully in the morning you will be back on your normal feeding schedule at your full feeds.
Since the transfusion started, you didn't have any episodes. However, you did give me a heart attack. I was looking at you about 10 minutes prior to going to see you again, and when the nurse pulled back your isolette cover, your face looked like it was having an allergic reaction to something. Your chin and cheek looked like they were red and blotchy. The nurse even said you weren't like that a little bit ago. When she looked closer (and when my heart sank) she said that the IV was leaking a little and that you had wiped your hand on your face so it was blood - not an allergic reaction. Once my heart came back up from my stomach, and after seeing her clean it off your face, I felt much better. I did ask her about how the blood transfusion would affect the blood clot. She started saying that it wouldn't because the lovenox would be taking care of it, but I told her that the doctor said that since it is only half a dose, it wouldn't be doing anything to the clot. She said that since the blood is distributed everywhere, it shouldn't have too much of an affect on the blood clot, but she would keep a close eye on your foot to make sure it did not swell or have any changes to it.
At 8 pm you had your second lovenox injection. I told her that I wanted to watch it (but that I passed out in high school when watching someone give a shot) because if you are to continue this medication, daddy and I have to give it to you at home (assuming you will continue it for 12 weeks). Shockingly, I watched as she explained exactly how to do it and I did not pass out. I MAY be able to do that for you at home. That is questionable. Daddy may have to if I can't.
After mommy left, they said that they were going to give you a bath and change out your isolette. Your isolette was supposed to get changed during the day, but with everything going on today, the day nurse decided it would be best to wait until tonight to change you over. I agreed that that was a great idea.
So to recap, tomorrow morning you will have an ultrasound, X-ray, and blood work. Tomorrow we find out if you have any bleeding in your brain and if we can increase the dose of the lovenox. I am praying that tomorrow will be a better day for you. I am also very nervous about results of the ultrasound, and if you have an infection. One day at a time. That is what I try to tell myself. One day at a time.
We love you and are praying for you. We know that you will fight through everything. I will see you bright and early and I will be with you every step of the way.
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