Where's the Nurse?

We are slowly adapting to having E home. I can now move more freely about the house while toting the feeding pump & pole, bouncing the baby and kicking the oxygen tubing out of the way of obstacles. Of course, I can only go 50 ft. in any direction from the oxygen tank (that's how long the tubing is) but that's good enough for me! I can't make it downstairs to enforce the 1/2 hour-only video game rule, but there's no complaining from the kiddos!

I will admit that I really miss the nice nurses at the hospital. It's a miracle that our baby is still doing fairly well in spite of her mother's oopsies with the medical paraphenalia. In my sleep filled days, I was a responsible person. No more! So far, I have broken the feeding pump once, given her too much milk straight into her intestines, and starved her for 4 hours because I didn't have the pump set to alarm when her bag-o-milk was empty. Today I took her to the pediatrician for her synagis (RSV preventative) shot. It took me a good 20 minutes to pack up her stuff and get the portable oxygen tank hooked up. After about 15 minutes of baby crying post shot, I checked the tank only to find that I had never turned it on! I don't think I will pursue a career in nursing.

The good news is that E is up to 8 lbs., 9 oz. She is starting to fill out and look like a normal baby. She continues to throw up a few times each day. The GI doctor is at a loss as to why she is doing this. Her food bypasses her stomach, so we're not sure what is going on. We took her back to the hospital Wednesday for an x-ray to see if maybe her feeding tube was in the wrong place. Everything was fine there. They changed her formula today to see if that will help. We'll hope for the best!

She's Home!

We brought E home from the hospital on Tuesday! It is so nice to have the family together in one place! Now a large oxygen tank and a feeding pump are the newest decorations in our family room. The baby sleeps really well at night, but her parents don't. The first night she was home we kept having to get up to figure out how to make the darn pump work correctly. The instruction manual the nurse gave us was in Spanish--at 4 a.m., my Spanish skills took awhile to kick in! Last night was better. Now I get to try to figure out how to get dressed and eat breakfast before noon while bouncing a baby and all her tubes. Any ideas?

Still in the Hospital

E was supposed to come home today, but she's still at the hospital. The doctors say she will come home tomorrow if all goes well. She has turned a corner--her resting heart rate has come down and her oxygen levels are higher. She still can't maintain a good oxygen level on her own for an extended period of time, but she is getting better. The best part is that she actually looks and acts more comfortable now. She can be awake without crying the whole time. I am so relieved!!! We did find out that her left vocal cord is paralyzed. This should get better on its own but it may take months. E will have her feeding tube into her intestines left in for 6 weeks before they will reevaluate the possiblity of feeding her orally since she is at such a high risk for aspiration into her lungs. Her right lung still has an area that is partially collapsed, but that seems to be slowly improving as well. There is, however, no hope for a cure for her hairstyle. Her hair has grown longer and has some cowlicks the size of Texas in the back. It sticks straight up almost everywhere. I'll post a picture when I get a chance.

One Step at a Time

I thought that once we were out of ICU that we would have a few relatively "easy" things to worry about. I have since learned that healing for these little heart babies is a one step forward, two step back process.

Wednesday was a hard day for me and my high expectations. The cardiologist came in on morning rounds and noticed that E had been sweating a lot. He bluntly informed me that this was a sign of heart failure, but not to worry--she didn't have the other signs (yet). Later on in the day, I got to give E a bottle for the first time. I was so excited that we were getting closer to being able to return to nursing since pumping and I are not friends. She choked on the milk and then just couldn't settle down. We found out that she has bad reflux. She had a swallow study done soon after and we were told that she can't swallow properly. Instead of milk or tummy juices going smoothly into her esophagus, they go into her airway. So, she had to have her feeding tube repositioned into her intestines and won't be able to even try oral feeding for 2 more weeks. The speech therapist also thinks that there is some weakness or paralysis in her vocal cords. That will be evaluated later. Thursday E had an episode of tachycardia (very fast heart rate) and couldn't handle being off oxygen at all for the entire day (she had been weaning to room air with some success). On top of all this, she is a very fussy baby. I can't say I blame her. She is constantly being poked, prodded, or otherwise bothered by well-meaning medical professionals. So, she is on a few more medications to help with her newest difficulties. That takes her meds count up to 8. But, thinking about all she had been on in ICU, this is a relatively low number.

In spite of the negative cardiologist and the setbacks of the past couple of days, we still feel that E will overcome her challenges. On the positive side, she finally started gaining weight today. The doctors and nurses are still planning on sending her home in the next few days. We are nervous about being responsible for her care but we look forward to having her back.

KD and I want to thank all of you who are praying for our little girl. It makes a difference. We don't know for sure what the future holds for our baby, but we do know a loving God is mindful of her. We will trust in His plan.

Out of ICU!!!

E moved out of ICU today--finally! Now we can focus on transitioning her back to feeding normally. She is still on a small amount of oxygen, but hopefully she will be able to regulate that better on her own as her lungs continue to improve. I look at where she was 2 1/2 weeks ago compared to now and am amazed at how she has healed. I am also amazed at how much love and support we have felt from family, friends, neighbors, and ward members. Our family feels very blessed!

Back in Mom's Arms

E went off the ventilator on Saturday. The cardiologist removed a line that went straight into her heart on Sunday and then we finally got to hold our baby after 9 days! When the nurse put her into my arms, E opened her eyes and stared at me for a long time as if to say, "It's about time!" After that reprimand, she settled down and went back to sleep (looking very comfortable I must say). She has gotten more fluid in her lungs since coming off the ventilator, so we're hoping for some improvement soon so she can get out of ICU. It's frustrating for me to go so slowly, but maybe I'll learn patience after all.

No More Chest Tubes!

I know it doesn't look like it, but E is missing 3 tubes that were draining fluid from her chest. The nurse removed them this morning. The doctors and nurses are still working on getting baby's lungs free of fluid so they can take her off the ventilator. Hopefully that will happen in 2 days. It seems slow, but she really is making progress. They have to keep her pretty sedated because she has quite the temper. Hmm...she fits right in! So much for my desire for a calm, sweet baby. It's better this way--she will have enough spitfire in her to get through this ordeal. Take a look at the hairdo. Today's nurse obviously likes the spikey look!