Day 141 – June 23, 2015
Excellent news today. I get to go home tomorrow! My doctor told Mommy that unless I lose a whole bunch of weight tonight that I should be fine to be discharged tomorrow evening. I have to wait until after my eye exam, but then I should be free to go. Today I have to get circumcised and they are going to show Mommy how to use my home oxygen and monitor. She also has to pick up my medications from the pharmacy since I still have to take those when I go home. I still don’t like them and they haven’t figured out a way to get me to take them so I don’t freak out.
Mommy picked up some of my prescriptions today, but the pharmacy hadn’t filled them all so she will have to get some tomorrow too. The hospital is going to have to fill one of them because the outside pharmacy didn’t know how to make it. After that I had to get circumcised which I didn’t like one bit. They rolled a table in and then strapped my legs down and swaddled my arms, but at least they gave me some Tylenol first. After that they put me in my swing and I slept for quite awhile. When Mommy came back I was hungry and tried to nurse a bit but was too upset, I wouldn’t take a bottle either. So they put me back in my swing and I slept for awhile longer while they had dinner. When they got back Mommy filed my nails while I was asleep. After that I did nurse for a bit but then I needed my diaper changed and I hurt so they gave me some more Tylenol. Papa rocked me then and I fell back asleep. My nurse will give me my medications and weigh me later. I’m 140 days old today!
Day 140 – June 22, 2015
Having a great day so far today. My doctor came in and spoke with Mommy to let her know that the results for my hormone test were mostly back and what they have so far are all normal. They are just waiting for the results of the human growth hormone test because it has to be sent to the Mayo Clinic, but it should be back in a couple more days. This is good news because it means that my pituitary gland is functioning properly. Otherwise my doctor says that if I gain good weight over the next couple of days I should be able to go home on Wednesday or Thursday and that means they have to start getting everything together for my discharge. Mommy and Papa have done everything they need to do, so now all my medications and home medical equipment have to be picked up and then tomorrow I have to be circumcised!
My afternoon and evening went pretty good today, they are waiting to weigh me and give me my medications until later tonight so that I nurse well while Mommy is here. My prescriptions have been called in and somebody will be coming tomorrow morning to show Mommy how to use my monitor that I will have at home. I’m 139 days old today!
Day 139 – June 21, 2015
Happy Father’s Day!
A bit sleepier today than I have been, since I had all milk with no extra calories for a couple of days they think I am just catching up, but since they added them back in yesterday I should be good to go soon. I have had to have a couple feedings through my feeding tube today since I have been sleeping so much so that is okay. I actually pulled my feeding tube out before my bath this afternoon so hopefully I don’t need it again.
Before I got my bath I had to do my carseat test. This means that I had to sit in my carseat for an hour and half and not have any issues with my heart rate or oxygen saturation that they had to intervene with. I had no problems what so ever, I was awake for the first hour and then took a nap after that. Another thing I can cross off my list before I go home.
(I haven’t decided how I really feel about my carseat yet.)
After my carseat test I had a bath and then I pretty much slept the rest of the afternoon. When Mommy and Papa came back this evening I was starting to wake up and then it was time for my evening breathing treatment. I did good for that, but then I started to get hungrier. Before they could feed me though I had to get weighed, I am up to 8 pounds, 3.6 ounces, and then get my medications. This is the first time I had to take them by mouth because I had my feeding tube every other time. To say I didn’t like them is an understatement. They taste terrible. Once I had had both of them they tried to get me to nurse, but I was just so mad and my mouth tasted so bad that I wanted nothing to do with it. After awhile they fixed me a bottle and I did end up eating all of that. Mommy and Papa discussed how they are going to give my medications at home, but little do they know I am never willingly going to take them again. The rumor is that I get to go home soon, but they have not set a specific date yet. I’m 138 days old today!
(Right after my medications.)
Day 138 – June 20, 2015
I’m pretty tired today, so they are going to have me drink my higher calories food when I bottle feed. I had just been getting plain milk in my bottles, but they think I do need the additional calories so they will add that back in today. I will probably go home with additional calorie feedings a few time per day, but they still haven’t decided what to use. I am due for a bath today, but since Mommy has to go to work they are planning on doing that tomorrow instead, I do need one though because I smell pretty bad.
I did really well with all my feedings today, I only had to have ½ of a feeding through my tube early this morning and then I have eaten the rest on my own. I held pretty steady on my weight gain today, not really gaining much of anything. I’m 137 days old today!
Day 137 – June 19, 2015
So I had another good night last night, I am eating pretty well on my own, but do occasionally need a feeding through my feeding tube when I get really tired. Otherwise my oxygen is at ¾ L/min and I am tolerating that well. My doctor came in and talked with Mommy some more about my MRI and said that even though everything looked good they are going to run a hormone panel to check and make sure my pituitary gland is functioning properly since it is right along with midline too. They will send that out sometime this weekend. Otherwise they are just trying to determine exactly what I should be eating when I go home and that will be one more thing to check off my discharge list.
The rest of my afternoon and evening went pretty well, not much to report other than that I am taking bottles and nursing well. I did spit up all over myself tonight though. Gained just a bit more weight tonight, but not a lot. I’m 136 days old today!
Day 136 – June 18, 2015
No more CO2 monitor! My numbers have been basically the same for the past week or so, so they decided today that they no longer needed to monitor them, especially since I will be going home soon. The also turned my oxygen down to ½ L/min this morning, but I am not too sure about that yet, my oxygen saturation is bouncing up and down quite a bit. My doctor came and talked with Mommy and let her know that my MRI results were good, they didn’t see anything they weren’t expecting to. They had noted on my previous head ultrasounds that I had slightly enlarged ventricles (where the cerebrospinal fluid is made) and an absent septum pellucidum (the membrane that separates the ventricles). This can be something that is just an anomaly, or it can be an indicator of a condition called Septo-optic dysplasia and this is what they were looking for on the MRI. It can cause issues with the optic nerves and also some of the other structures along the midline of the brain. They did not see anything further that would indicate that I have this condition so for now they will just keep an eye on my development and make sure everything continues in the right direction.
I am due for another vaccination today, but my nurse said that they will wait until later in the day when Mommy has gone to work. I tried to nurse this morning, but was so tired that they had to use my feeding tube for that feeding. I did take two whole bottles overnight though and only needed to be fed through my feeding tube once because I was sleeping still. This is good progress especially with everything that they have done with me the past couple of days. My developmental therapist is going to come next time it is time for me to nurse and they are going to weigh me before and after to make sure I am getting enough.
I am still all over the place for my oxygen saturation this afternoon so while I was nursing they turned it back up a bit and I did much better. When they weighed me after I nursed I gained almost 80 grams, which is a huge amount, so they are all very happy.
When Papa got here this evening I was hooked up to a bunch of monitors and there were a couple of my nurses in the room with me. They were happy and laughing though and it turns out they were trying to test my hearing. They put things over my ears and stuck to the top of my head and did some stuff and apparently I passed. One more step to going home passed. After that it was time for me to eat and I took a bottle for Papa! I also gained a bit of weight back today so I am at 8 pounds, 1.6 ounces, but they will continue to keep an eye on that. I am 135 days old today!
Day 135 – June 17, 2015
So they have turned my oxygen down from 1 L/min to ¾ L/min and I am doing great. They have also switched my feedings from 4 times per day breastfeeding to breastfeeding as needed, which means whenever I am hungry I can eat. I have a bath scheduled for today and am due to get the first of my 4 month vaccines. Mommy talked with my doctor and they are also going to try and get my MRI done today, but we are waiting to hear when that will be.
I wasn’t really sure about my bath today, not angry, but not really enjoying it either. On the plus side they took out my feeding tube during my bath because it was due to be changed and they have decided not to replace it until I need it. Mommy is going to be here all day so probably not until later tonight. We just heard that my MRI will be this afternoon so now we just have to wait.
So I went on a ride today. In order to get my MRI done they had to wheel my crib all the way over to the other building. This means that I went down the elevator and through the staff tunnel to the MRI area, this is the furthest I have been since I was born. When we got there they covered my eyes and ears, then they swaddled me up tight and put me in this compression wrap so that I couldn’t move. I wasn’t too happy at first but then I ended up going to sleep which was good because the first images they got were pretty fuzzy. Now we just have to wait to hear from the radiologist.
I have been doing so good nursing today that Mommy and Papa asked if I could try the bottle tonight instead of tomorrow since if I can eat good from there too I don’t have to have my feeding tube back in. The doctor said that that would be fine and for now they will just use milk, no supplements because they don’t taste good. I didn’t want it the first time they tried this evening, but they had just suctioned a HUGE amount of boogers out of my nose and I was not too happy. I was also getting pretty sleepy so Mommy just nursed me before they went home. My nurse will try the bottle later tonight. I did lose a bit of weight today, I’m 8 pounds, 0.2 ounces, but I also got my diuretic this morning. I’m 134 days old today!