Chloe is doing well, she is now 4 lbs 13 oz and starting on her way to be one of those industrial strength babies that we read about in the papers. You know those babies that are 8 or 9 pounds and some odd ounces.
Our daughter is a special girl, she has done amazing things in our lives and the lives of those close to us. Today our church celebrated Advent and Chloe was there in proxy. The church has been very supported of us and for that we are thankful.
Day 86 (December 10, 2001)
Good News
This was the day that every preemie parent wants to have. The first thing that we noticed was that her Oxygen was set back down to 23% again and the liter flow was turned back to 1 liter (from 1.5 liter). This was really good news, because both Cheryl and I want her to come home without oxygen assisted equipment.
More Good News
The next thing that I noticed is that she did not receive her Lasix dose today. Upon further questioning, I found out that they stop giving her the Lasix. This is good news because that is one thing closer to Chloe coming home. The next couple of days we will learn how Chloe reacts without the of Lasix.
Even More Good News
The last thing that we found out was that Chloe does not have her feeding tube. They are now feeding her every time (8 times a day) by bottle.
The thing that annoys me was that Cheryl and I did not even notice her food tube gone. I don't believe that we are failures as parents, but it is time to concentrate on Chloe.
Some Bad News
Chloe had a Bradycardia during one of her feeding. It has been a long time since she had a Bradycardia and they never get easy. On the good side of this, it has been weeks since we seen the last Bradycardia. In fact it has been so long that we do not ask if she had any when we talk with the nurses.
General News
Chloe weighs 5 lbs 0.4 oz. and she is alert and waking up at each meal. She is doing all new born baby things just on a miniaturized scale.
Chloe's Room
A friend of ours (Rhomi Tripp) has spent many of
hours painting Chloe's room and it looks so good that I want to move in
it. Words cannot express how thankful we are to Rhomi for her
work. If you wish to check it out go to
Chloe's Room page.
Our Living Room
Our friends from Church volunteered to set up our Christmas tree, because quite frankly Cheryl and I are just too tired to even deal with it. They did a great job and it was great driving in at 12:00 AM and seeing it lit in the bay window. Thanks Wayne and Josh for your work.
Thanks to Everyone
For everyone who has been praying for Chloe and us. Thanks. God has taken us through an incredible journey that I cannot communicate other than a simple diary. Cheryl and I,have had many deep emotional days, experienced burn out and our lives became so disoriented that keeping up with simple things was incredibly hard. Thanks again for your prayers through all of this.
Warmth and Comfort in the hands of the Living God made
this journey easier because the outcome was for His glory.
Good News
Chloe made it through her first day without that green feeding tube down her throat. She is a big girl now so it is the bottle or no food, fortunately she is drinking all of the bottle and quickly.
More Good News
They have reduced Chloe's nasal tube air flow by 1/4 liter (now it is 3/4 liter) which means that they are reducing her Oxygen then they will cut her cold turkey. 3/4 of a liter every minute is not really that much when you think of a large soft drink bottle is a two liter bottle.
Yes, More Good News
They have taken Chloe off another
drug/mineral Potassium which will make our lives easier when she
will come home.
Some Bad News
Chloe had another Bradycardia today, but this is probably because of her feedings by the bottle. Although a Bradycardia is a scary thing for any parent. But the good news is that she has only one Bradycardia a day while some preemies will have a Bradycardia per meal.
Chloe's Room
Rhomi has been doing a fantastic job to Chloe's room. I am thinking of moving the girls into the big room and I will sleep in Chloe's room.
Question of the Day
When will Chloe go Home?
We have been doing lots of intelligence gather concerning the mechanics of Chloe's coming home and here is what we know.
- Chloe need the minimum of three things:
Breathing -- they are trying to wean her off.
Eating -- she needs to eat every meal and then eat as much as she wants. Currently it has only been one day since she started eating all of her meals via the bottle.
Maintaining temperature -- Chloe has done this a long time ago.
- The doctors will request (really order us) to spend a whole day with Chloe. It has not been done yet.
- The doctors will request us to stock up on all of her drugs. This has not occurred yet.
Chloe is progressing very quickly which causes Cheryl and I to
believe somewhere around Christmas.
Today we learned that Chloe will not be going home anytime soon. It looks like New Years time frame because they want to eliminate as much as they can so that we will not have to do those things.
Learning about her not coming home soon hit us both especially hard today. This has been a hard time for both of us. The emotional and physical toll that it has taken on us is taxing us to the limits. But even when Chloe comes home life will not come back to normalcy, because Chloe will have to be in what is called preemie isolation.
Preemie isolation means that we cannot take Chloe out into public or have her mingle with others until Spring time. She has Chronic Lung disease which means that if she gets a simple cold she could possibly die or just be scarred for life with breathing disorders. So if you want to see her please understand if we refused.
We also learned today, that will will have to watch her water intake until her lungs develop fully.
Chloe weighs 5 lbs 2.5 oz and she is looking more and more like those industrial strength babies.
One of the things that made us so upset with everything was the fact that twenty days ago, when we were told to get ready because Chloe is coming home soon then today we they have no clue. Since there was no setbacks that Chloe had, then how can they make a determination twenty days ago. This is the process, that got me to yell at a doctor and a nurse. I got no real answers other than that they should not of done it, which is what I wanted to express.
Chloe has been drinking every meal, but she now plays games with the one feeding her. She is now 5 lbs 3 3/4 oz. and it is hard to leave her. Her oxygen intake was about 30% while the volume was lowered to 0.5 liters per minute.
We long for the day she comes home, but our first goal is her health. We just wish that we would not get false hopes.
The family conference went well. It appears that there is divisions between the doctors of when to send Chloe home. One wants her to come home now, while another wants her to go home without oxygen. Another doctor wants her to come home without drugs. This is part of the reason why we get conflicting signals from the doctors and when you throw in the nurses' input that only compounds the problems.
We still have no clue when Chloe will come home, we only know that it is has been 90 days that Chloe has been in the hospital and it is 90 days of compounding frustration.
Chloe now weighs 5 lbs 4.7 oz and is still is on oxygen (24% with 0.5 liters per minute). .
We did call the hospital to get general information on Chloe and they
told us that she is doing very well and that she did not have any A's and
B's (Apnea or Bradycardia incidents) and she eats all of her meals.
Today, we also learned that one of our friend's kid has RSV ,and all is going fine for them other than no one wants their kid to have RSV. Anyway, why we bring this up is because something like this would either KILL (as in dead, gone, buried) Chloe or scar her for life (i.e. will have severe lung problems that will affect the quality of her life every single hour of each day ). So when Chloe comes home, do not take offence when we say "NO!". We both hope that everyone understands why we will be over protective when it comes to Chloe.
(Chloe and Bones 80 days after birth)
(Chloe and Bones 8 days after birth)