Saturday, January 3, 2009

Pulmonology appt

Yesterday, Bree had her pulmonology appt at PCH. Our good friend, Aleasha, watched Riley for us so that we could concentrate solely on Bree (HUGE thanks girl!)! We met with Dr. O'Hagan, and briefly talked about her oxygen needs and how she has been handling it. Our next conversation was about everything else going on with her: how she cries (loud!), how she eats, how her weight gain has been, and how she has been with peeing and pooping (eh...).

Dr. O'Hagan left the room to go round up our needed consultants after hearing all of our information. So, in came a nurse that was skilled with the oxygen and all those needs. She brought with her an oximeter, and we hooked Bree up and turned off her oxygen. Funny enough, Bree HATED having the oximeter on her foot! (Maybe she figured the past three months was enough to last her a lifetime!) She screamed, kicked and fussed so much that it was hard to get a good reading. No amount of shooshing, jostling, swinging or consoling could calm her down. After the test period, the nurse went to consult with Dr. O'Hagan about what his reccomendations will be.

Next came the dietician. Due to Bree's problems with gaining weight, we discussed all that she was getting. What it was, the frequency she was eating and how she does with burping and "urping". Bree was on a 27 calorie per ounce diet. It is breastmilk fortified with Enfamil Enfacare. The dietician put Bree on an additional fortifier which now makes her 'meals' 30 calories per ounce. The new 'adder inner' is called Duocal, and can only be purchased online. For right now, we have about a twenty day supply given to us. So Bree's cocktail is now 180 cc's (6 ounces) of breastmilk, four teaspoons of Enfacare, and a teaspoon and half of Duocal. We mix that all up and use it as needed for her feeds. We go through about two six ounce bottles every 24 hours. We now have to call and give the dietician Bree's weights after our nurse comes to the house so that her weight gain can be tracked. We need to see if this increase is going to help her gain weight, or if something else needs to be tried.

The pulmonology nurse came back in after the dietician visit and since Bree did pretty good with her test. She was able to keep her oxygen saturations above 85 even with the screaming and fussing (which is what they want to see). However, since Bree is having issues with gaining weight, they do not want to stress her body anymore than they need to so we are going to wait on weaning her off the oxygen for a few weeks. We are doing an overnight study on January 23rd. This consists of us hooking her up to oximeter when she goes to bed for the night and taking her off of her oxygen. For a good 6-8 hours, we will monitor her saturations. In the morning, the machine will be sent to PCH and they will pull all the data and it will take about a week for them to consult with everyone to be able to make the best move for Bree.

Time will tell what will happen and all we can do is trust God and pray!

Hope this finds everyone happy, healthy, and in love with life!

Thursday, January 1, 2009

Little cutie Riley

So, I need to get these things written down before I forget! Riley has been doing some SUPER cute and amazing things this past week. I am sure you all will enjoy them just as much as I have:

1. "High chair? High chair?" Riley has exploded in language as of lately! She now says high chair, all done, Sissy (as in sister), baby, cookie...the list goes on and on.

2. She now gives Bree high fives. She lifts Bree's arm up, then lets go of it and gives her a quick high five while squealing in delight at the same time!

3. Today, I took Riley shopping with me and after parking in our parking spot I had to find my shopping list. The radio was still playing and on the song it was singing "Baby, baby, bayyybeeeee". Next thing you know I hear "Bay-bee, Bay-bee" coming from the backseat. I immediately said "Aww, are you singing?" (not expecting a response) "YUP!" says Riley emphatically...too cute!

4. Riley will run towards you with arms stretched out saying "HHHUUUUGGGG!" and then tackle you at full force. I am surprised I have not been knocked over yet!

5.This one is the best! Bree has her monitor that if the cord is stepped on, the wires become loose and make a very VERY loud screeching noise. Well, Riley stepped on it today and Adam came to rescue when the noise started. After it was fixed, Riley sat down in front of the monitor, and started lifting it up to look at it all the while repeating "Oh sh*t, Oh sh*t, CAP (crap), Oh no!"

Hope that put a smile on your face...I know it did ours!

Tuesday, December 30, 2008

Measurements, shots and poop

Both the girls had check ups today with their pediatrician, Dr. Pham. Oldest goes first!

Riley is 23 lbs and about 32'' tall. For weight she is in the 50th percentile and for height she is in the 75th to 80th. He is not at all worried that she is still using bottles and wants to wait a little bit before we start phasing them out since we are having so many changes in our family as of lately. This was the first dr. visit in a long time that during the exam she did not cry. She just sat there and looked at him as he listened to her heart, looked in her eyes and then looked in her ears. I was so proud! She did get her 15 month shots today, which there were three of them. After some tears and crying (and some snuggling with Mama) she was able to walk out of the office on her own steam.

Now onto Bree...she weighed 5 lbs 10 oz and that was only a weight gain of 4 ounces in two weeks. He would like to see her gain at least a half an ounce a day. Since he can't increase her calorie intake (she's already at the max) we are going to be watching her weight very closely. If she continues in this pattern we may be looking at having a feeding tube put in again. She was 19 inches long, and is doing pretty well in all other aspects.

We are having issues with her pooping (every parent's favorite topic of discussion). She is not doing it on her own for some reason. So we have been instructed to give her a suppository every three days. Right now, it has been five days and she has not gone since christmas. We know it is bothering her because she was up over half the night last night (and we were too!). So needless to say, I am exceptionally tired today. I never thought I would say this, but I am excited to give her a suppository today because it means that we will all get WONDERFUL blessed sleep tonight. (Hopefully Riley complies with this too!)

Hope this finds everyone happy, healthy, and in love with life!

Monday, December 29, 2008

Faith Motto

"Trust in God with all your heart
No matter what you do.
Lean on him during hard times
and He will see you through"

Eye, eye, eye!!!

So today we had another eye appt for Bree with Dr. Golub. He is the doctor who did her laser eye surgery for her ROP and we have a standing date with him every Monday. (Okay, so it's not really a "date") Bree's left eye is doing great and he said today that it looks as though there is a complete recession of the disease. Her right eye is a different story. There are some great parts that are healing, while there are other parts that have showed no change for the good or for the bad. There is also a slight retraction of her retina, which is the biggest concern. If it retracts any further, we will be sent to consult with a retina specialist and we will probably be having another surgery of some sort.

Let's all take the time to praise God for his goodness and faithfulness! We thank Him for all that He has done, and we ask that He continue to be with Bree and to help heal her right eye. We would like to avoid all surgeries, but if that's what He has in store for us we will take it and do our best!

Hope this finds everyone happy, healthy, and in love with life!