Chloe was a champed. she handled the car ride and the movement very well. Unfortunately, adjusting to a different environment was/is hard on her. The hospital has all of these machines that make ding noises that just cannot be reproduced in a home environment.
Chloe's parents had a rude awakening, preparing all of the medicines and adjusting our life to her life. I feel that this is only the beginning. With all of the medicines that Chloe had to have, we spent most of the night pre making her doeses. After we would make all of the doses for each meal we put them in a plastic bag with the hours that they are to be given. Fortunately, each of the drugs have a different does and color and amount so we can easily tell them appart.
| Drugs that Chloe is on | Dose | Reason |
| Aminophylline | Every 6 hours | Respiratory Distress Syndrome Bronchopulmonary Dysplasia |
| Aldactazide | Once a day | Bronchopulmonary Dysplasia |
| Feinsol | Once a day | Anemia |
| NaCl (Salt) | Every 3 hours | Hypontremia |
| Regulan | Every 6 hours one half hour before feeding | Gastroesophagel Reflux |
| ZANTAC | Every 6 hours one half hour before feeding | Gastroesophagel Reflux |
Chloe's room is so full of hospital equipment that one can hardly see the paintings on the wall. With the Oxygen extractor/concentrator machine that we use and the spare oxygen tank and then the transport Oxygen tank. Also the Apnea monitor and the cables leading to Chloe.
Chloe loves the swing and in the evening we had Chloe down stairs on the swing looking at the Christmas tree. It was like a first trip to Disney World, her eyes were wide as they can be and she was look at the tree with a huge grin on her face.
We had a Home Health representative come in and show us how the Pulsox worked as the same time we had people come in and install our new dishwasher. It was a zoo, but we handled it.
Chloe is starting to train her parents very well and we are now learning her different cries and the like. Greek was easy compared to this.
I also made a spreadsheet of the times and the drugs required for each meal. This was a whole lot easier to understand and made the making of all of the doses for Chloe.
Chloe's examination revealed that she is in good health with the exception of these issues:
- She has Chronic Lung Disease and will require special attention for the next couple of years. She will require special shots (Synagis) that inclues more than one dose costing $1200 per dose (not $12.00) every RSV season months for two years. Ouch does not begin to describe what daddy feels about this price, but hopefully the insurance will cover it.
- She has a Umbilical Hernia which in time will go away. Preemies have belly buttons outwards rather than inwards.
- She has a Groin Hernia which will require an operation sometime in the future.
- She has an Hemangioma which is a type of birthmark that just looks bad but will go away in time.
Chloe had her first nurse visit today which was nothing like we expected. On the one side, we had to tell her everything about Chloe that the hospital should of told her. On the other she helped us give Chloe a safer environment and eased our nerves having Chloe home. The nurse was a real hoot and she is a mother of a preemie as well -- that combination makes her visits welcome.
The nurse also pointed out that Chloe's Pulsox probe was the wrong one and we had to get a new one delivered. The home health lady who monitors all of the home gizmos is very nice and because she lives close to us she makes the deliveries her self.
We received Chloe's bill from the NICU and if anyone wants to guess what it was just send Chloe an email. I will say this, I will never be without health insurance or complain about our premiums again.
Other issues arrived and this day that made a full day unbelievably busy,
but all in all, Chloe is home and mom and dad are very very happy.
Dad went to a Woodworker show while mom spent most of the day with Chloe who now has a new nickname. We call her "The Universe", because it appears that she does not believe that she is the center of the universe but rather she believes that she is the universe itself.
One of the great things the visiting nurse helped us is that Chloe is connected to electrical probes. These probes cost about $15.00 per set of three (2 are needed). She suggested using band aids that way we can recycle the probes. I do believe they are covered by the insurance company but I hate to waist things.
Chloe in the afternoon had one of those days where she was very angry about sleeping and her in ability to do a lot of things. She cried for three hours and caused mom to be very fatigued. When dad got home, Chloe was his present at the door. Dad put Chloe on the swing which calmed her down some and then he laid her down on his ever expanding stomach which she enjoyed. Chloe eventually went to sleep and so did her parents.
The lung doctor also reviewed the Apnea monitor's output and noticed that Chloe had no Apnea episodes so he took her off one of the medicines and told us to be back in three weeks. Needless to say Cheryl and I were extremely happy this day.
The pediatrician gave Chloe a clean bill of health all things considering and performed a blood test. Chloe does not like blood tests but she did great. In the NICU when Chloe got a blood test she handled it fine then 5 minutes after the test she started screaming. Go figure.
Chloe weighed 7 lbs and 4 oz. and is healthy for a preemie.
The biggest problem we have for Chloe is what we call her Borg attachments. This probes attach to Chloe's chest and are used to monitor heart and breathing for Chloe's Apnea machine. The problem is that there is a non sticky version of these probes (the are held on by a Velcro chest band) but Chloe is way too small for the chest band to work reliably. So the only option is the sticky probes which cost $15.00 per set. The nurse told us that we can keep them on longer using band aids and that works very well. We ordered another three sets and hopefully that will be enough for Chloe until we say good by to the machine.
Day 23 of Chloe Being Home (January 25, 2002) Chloe had another Pediatrician visit and unfortunately dad was sick with the flu so he could not be there with the doctor. The doctor is very pleased with Chloe's progress and does not want to see her until two weeks later. This is good news for everyone -- it shows that Chloe is doing extremely well and the doctor has confidence in her ability.
Chloe also received the first (from the pediatrician) of her ultra expensive shots ($1,200.00 per shot) and she does not like them at all. Her parents are very happy that the insurance is taking care of the shots or else dad would not like it at all.
She is weighing 8 lbs and now she is 20 inches long.
One very interesting thing happen this day. Chloe was lying in her crib with her bears looking at her and she was looking at them and crying. Cheryl surmised that Chloe was frustrated with the bears because they were not talking back to her. This assumption is one that I whole heartedly agree with her. In just a few years from now she will be listening to the bears talking back to her.
Day 25 of Chloe Being Home (January 27, 2002) Chloe's Hemangioma scab broke lose and fell off of her neck. Fortunately there was no bleeding which mom and dad were extremely happy. One of our many fears is that if it started to bleed at the wrong time (like 1:00 AM) Chloe can bleed to death. We coat her Hemangioma with ointment that keeps it soft and does the antibacterial thing to keep out infections and lessons the chance of bleeding. We have also noticed how it has been getting smaller although we really have not measured it to note if our observations are correct.
Dad is still sick, mom is healthy physically (mentally at the moment questionable) and Chloe is still the universe.
Mom needs a break which will hopefully come soon.
Chloe is now really stingy with her burps, so much that it is extremely difficult to get the out of her. On the other hand, she downs a bottle of formula in no time.