28 ounces: Alexi's Story (Part 1)

November 17th is Prematurity Awareness Day. I am sure everyone has heard of the March of Dimes Foundation and seen the advertisements regarding premature babies, however until you have had encountered one of these tiny miracles first hand, you will never fully grasp just how precious life really is.
On July 3, 2006, I gave birth to my daughter Alexi. I knew from early on in my pregnancy that Alexi would be premature, but I never could have imagined that she would be born at 28 weeks, weighing in at only 1 pound 12 ounces and measuring 13 inches long.
I had just found out earlier the year before that I had developed Membranous Glomerulonephritis, a kidney disease specifically related to Lupus. My nephrologist wanted to put me on heavy chemotherapy drugs, however warned me of infertility. I was given two options: start the medications or start a family. I chose to start a family. Please join me in my journey from Alexi's first breath to her first birthday.

NICU DAYS
First day in this world- click here for video

July 11, 2006
Alexi's only 1 lb and something ounces... so she's a tiny little bugger! I got to hold her yesterday! Alexi is doing really well, she is off a lot of her tubes and wires!

July 13, 2006
Alexi is 10 days old. She had a very minor setback to where she is back on her CPAP (the oxygen), but she is breathing mostly on her own. Lexi is only on it to help her so she doesn't have to work so hard. The doctors are adding some extra calories to my milk to help her gain more weight. And they have her lying on a wedge to help with acid reflux. Lexi is a fighter though, and she is doing real well!!
I got to hold her today for 45 minutes, and she let out all sorts of little coos, it was sooo cute!! I will be able to hold her more once she reaches 1,000 grams, and we can't wait!

July 15, 2006
Lexi had a tiny bit of a set back today; she is on antibiotics due to a slight infection. She will be alright, but she needs to just get over this little bit of infection that she is battling. The nurses said that she will probably be on antibiotics for just a couple of days.
I held Lexi for an hour today, and it was great. She was so content just cooing away. Lexi is now 1 lb 10.6 oz. She's almost back up to birth weight.

July 21, 2006
Alexi is 2 weeks and 4 days old. Since she's been born, she has had 2 blood transfusions (one on July 6th and one on July 17th) and a platelet transfusion (July 6th). Both transfusions have been successful and for the second transfusion, she received her dad’s blood!
Lexi was put on antibiotics last week for a slight infection, but is better now, and her last round of antibiotics was today at 4pm. She is through with the antibiotics. Lexi lost a little bit of weight at first and was having a hard time keeping weight on. She was not completely digesting her food either, but as of two days ago, things are turning around and looking better! All of her food is being digested, and she is tolerating her feedings well, and she is gaining weight now!
Tuesday Lexi was finally above her birth weight- 1 lb 12.2 oz. Wednesday she was 1 lb 13.4 oz and as of today she was 1 lb 14 ounce. She is doing very well and the nurses and NICU doctors are pleased with her progress at this time. Lexi is getting some cheeks and even a little bit of a chin!!!

Lexi will be able to come home most likely in the middle of September. They do not determine when she can come home based on her weight, but on her progress. Even when she comes home from the hospital, we are going to have to be careful with her for a while. The nurses were saying that Lexi's immune system is very weak and she will be coming home from the hospital during flu season. She will be a candidate for a special shot for preventing the flu which will be given monthly. It's recommended that she stay away from large crowds until the end of flu season and to make sure that whoever comes in contact with Lexi is healthy.
I go into the NICU to see Lexi at 2pm and 8pm every day. At the 2pm feeding I stand there looking at her, she holds my finger and I talk to her. She is so cute, she just looks at me and it’s amazing that my voice can be so soothing to her. At the 8pm feeding, I get to hold her for an hour. I love this time. I sit there with her and hold her so close, and I just talk to her. She makes all sorts of coos and she sneezes and just all those baby sounds make me melt.

July 23, 2006
Lexi is doing well. Her weight is up to 2 lbs 0.8 oz as of today, and she keeps on gaining. She is still doing well and her feedings are up to a half ounce each feeding. I can see Lexi starting to fill out a little!

July 26, 2006
Lexi is doing really well and gaining weight a lot quicker now. It seems once she hit the 2 lb mark, she started gaining quicker. The beginning of the week Lexi was 2 lb 0.8oz. She went up to 2 lb 2 oz...2 lb 3.9 oz...2 lb 4.8 oz... and today she is up to 2 lb 5.6 oz. The doctors are really pleased with her progress so far. We are finally able to hold Alexi twice a day now because she has gained enough weight.
Lexi gets a shot of Procrit on Mondays, Wednesdays and Fridays to help her make red blood cells. Preemies have a hard time making red blood cells on their own and this drug will help prevent Lexi from needing to get another blood transfusion. The doctors said that too many transfusions could result in her rejecting the transfusions later, so they like to save the transfusions for when they are absolutely needed.
I am starting to get my symptoms of lupus back, and need to go back on my medication. I am unable to breastfeed because the medicine passes into the milk and there is contraversy over whether or not it could cause dammage to the retina.
We have decided to go through a milk donation center to get breastmilk for Alexi. The lactation nurse, NICU doctor and nurse at the hospital spoke with me about the pros of giving Lexi breastmilk vs just formula so we feel confident in our decision to use donor milk.
With breastmilk, Lexi will most likely be able to come home from the hospital sooner. Breastmilk helps with allergies, colds and upper respiratory diseases, helps to prevent bowel problems common in preemies, helps to give them immunity and a whole host of other things.

August 6, 2006
Lexi is up to 2 lbs 8.4 oz today and has been doing really well. They keep having to turn her isolette bed down because she is starting to be able to maintain her own temperature a little better. Her nasal cannula (the oxygen prongs in her nose) is turned down also to 0.25, which is real low, almost non existant. Her weight has been slowly getting up there. When Lexi reaches 1300 grams, we will be able to hold her at every feeding. Right now we are only able to hold her twice a day. Also, soon they are going to try bottle feeding on Lexi. I told the nurses that they NEED to contact me when they are going to do so. I don't care what time of day or night it is, I want to be there.
We painted Lexi’s room light purple last week and put it all together and decorated it this week. It is sooo cute!! I Now, since we put her room together, I've been a little bit depressed. I just can't wait for her to come home. Only one and a half more months, hopefully sooner! I wish that the time would just fly by.
We picked out a pediatrician the other day. And we looked at car seats and strollers. Because Lexi is going to be under 5 lbs when she gets discharged from the NICU, she needs a car seat that is designed for 4 lb babies. We found one that we will be getting at Babies R Us.
And then today we took an infant CPR class. We've been real busy trying to get everything done!

August 11, 2006
Lexi started bottle feeding this past Monday, and we are feeding her by bottle twice a day. She still has her feeding tube in, but she's giving bottle feeding her best effort.
Lexi has also been taken off of her nasal cannula (oxygen) and is breathing completely on her own. It's so good to be able to see her without all of this stuff all over her!!! They took the oxygen off of her on Wednesday night. And.... Lexi had her first bath too!
Lexi is really starting to get her own personality. If she doesn't like something, she will let you know! It's soo funny! And she smiles (or maybe its gas), and wrinkles her nose at us. Lexi is up on her weight too! She had a big jump in weight from yesterday to today. Yesterday she was 2 lb. 10.6 oz, and today she is up to 2 lb 13.3 oz!

August 16, 2006
Lexi is doing awesome! She's getting to be a big girl... meaning more mature. The doctors are really impressed with how well she is doing. Weight wise, she's still a little peanut but she's coming along!
Lexi is up to 3 lb 3.3 today! Yesterday she had a little bit of quick breathing, and the drs checked her out. They said that she has a little bit of a heart murmur, but it is nothing to get very worried about. The drs are just going to keep an eye on it, and said that lots of people have heart murmurs. Most of the time it is no big deal. She hasn't had any more episodes of quick breathing since.
Lexi is now taking the bottle at every feeding and she loves her bottle. She is usually finished with her bottle within 15 minutes. The doctors said that Lexi will most likely get her feeding tube taken out within a week. They just want to make sure that she continues to tolerate the bottle feedings before they take the tube out.
Lexi has quite a reputation here at the NICU. She's known as a little feisty one. And the nurses love it. They all fight over who gets to take care of her. They said that she's got a cute little personality :)

August 21, 2006
Lexi is doing great! I had some cute pictures so I just wanted to send them out. She is going to be home in a couple of weeks and we are so excited! I can't wait!
Lexi is up to 3 lb 6.6 oz tonight and she's a little piggy, she loves her bottles! She was still hungry tonight after she was finished with her bottle.
Not much else to report, just that she's a feisty little thing! ->