Thursday, January 29, 2009

Sunday, January 25, 2009

On our way

Words cannot express my happiness and gratitude at the moment. Last week I had to desist kangaroo care and me holding Elena because it was tailspinning her into these deep oxygen desaturations that required intervention. Not fun. So I laid off for the last week which made me pretty unhappy. Our interaction has been me staring at her and grabbing her hands or toes or holding her back.

Well yesterday Elena reached a defining moment.

The whole goal of her oxygen intervention was to get her to room oxygen which is 21%. This would be a sign that her lungs were healing. As of yesterday Elena reached this goal. Elena being on the CPAP is a nonevent, but oxygen is a drug and is toxic to humans beyond a certain level of exposure. In all honesty I was expecting Elena to get to this sometime mid February.

She reached it yesterday, January 24th.

I have to wonder if all of this is related to the fact that my attitude about this experience changed. The first 2 weeks after I gave birth were a disaster. I had never felt such an inconsololable grief and I was like an open wound, constantly on the brink of spilling tears. I expected a call from the hospital at any moment with bad news. This never happened, but Elena was pretty sick. The attending doctor on call for her first two weeks sat down with Andrew and I (and Mary Jo) and thoroughly laid out his plans for her care. He told us he had high hopes for her. This was Elena's intubation period.

After two weeks Elena had a new attending doctor, Dr. Ten. Dr. Ten will always be in my heart. It was under his care (he would stop into her room 8-10 times a day or more) that Elena went from being intubated to the CPAP. During his time she needed his unrelenting drive and determination that she would get better and I felt like she needed consistency and someone to believe in her. Ten was on her like white on rice.

Every morning I would come to the hospital and sit through rounds (it's a teaching hospital) to hear her prognosis and the plans Ten had for her for the week. This time was a rollercoaster. She had one step forward and two steps back. But Ten never waivered in his optimism or fight. He was exactly what Elena, Andrew and I needed. I remember the day they put her on CPAP and I came in. Elena looked swollen and terrified to breathe on her own and I started crying. Dr. Ten said, "mommy why you crying? She is sailing." And he motioned his hand upwards like Elena was taking flight. My heart lifted a little.

For the next week Elena and her lungs slowly got better. Then came Dr. Parravicini. I walked into the hospital the morning of the 12th and Dr. Ten came to visit me with a doctor. I was confused. He told me that his attending duties were over and that Dr. Parravicini would be the new attending physician. I was gutted. I mean I was having Dr. Ten dreams at that point. He explained that Parravicini knew Elena's case and Parravicini assured me by her demeanor and warm smile that things would be okay.

This Tuesday Andrew and I had a sit down with Parravicini to get Elena's prognosis as Elena seemed to have hit a plateau. She was not getting better or worse. Parravicini ran me thorugh Elena's history and then said, "I believe that everything happen for a reason. I think she is teaching you patience." Parravicini assured us that Elena would direct all of us and let us know when she was ready to be better. She said, "she [Elena] is a good girl." I realized that perhaps I was the one limiting Elena and holding her back. I need to have patience.

Through all this I suppose I have realized or noticed that maybe everything does happen for a reason. Every doctor to this point has been exactly the doctor Elena and we (Andrew and I) needed physically and emotionally to get through those exact moments. And that we truly direct our lives. I will only be what I think I can be. So simple yet difficult to master.

Saturday, January 17, 2009

Day 42

Elena is stable. She has sort of hit a plateau where she is on the CPAP requiring very little oxygen, but it is a leap for her to be room oxygen (21%) and then off CPAP. She is getting fed breastmilk and tolerating it pretty well. Considering where she was, she is doing well. She is also becoming a little fatty which is so exciting- she's about 3.5 pounds of lovin'. I am able to hold Elena on a daily basis now which is great for the both us. It gives me immense satisfaction to have her in my arms and will hopefully accelerate her healing. I am happy about where she is but want her to get off the CPAP sooner than later.

Sunday, January 11, 2009

Welcome to Elena Marie

This weekend was monumental and I think there has been a breakthrough. I was able to hold Elena for the first time yesterday and today (Andrew did today too). Supposedly she responded to my touch because her numbers yesterday (blood gas) were good and the doctors were trying to figure out why. The only thing they could come up with was that she had mommy time (or so I'd like to think).

Well I present to you- Elena Marie Gefell. There she is. Who do you think she looks like? I say a mix.

Wednesday, January 7, 2009


We celebrated Elena's one month yesterday- holla.

Elena has been extubated- yay! She made it through the first 24. This is exciting news for us. 32 hours have passed since she was extubated. The first 24-48 hours are the most critical and the longer she stays off the tubes, the more likely she will recover without having to go back to being intubated. We are/were all crossing our fingers, toes and eyes, that she would hang in there as we weren't sure how she would manage during the most critical first 24 hours (this was their 3rd attempt). After 1pm tomorrow, Elena will be at the 48 hour mark and more than likely be in the clear.

Once again, Elena has shown us her character. Whereas I have been insecure, uncertain, generally a mess, she has been steadfast in her recovery which has been slow but steady.

In replacement of ventilated intubation, Elena is currently on the CPAP which has two nose prongs that deliver oxygen. She does all the inspiring and expiring (we were scared she might need help doing this, but she's doing a pretty good job herself- the ventilator was giving her breaths per minute), and gets oxygen through her nostrils. The next step after this is to begin feeding (small amounts of my breast milk) and see she how she tolerates it. This should begin this week, and I think it will be tremendous help to her growing and getting better.

As for me, I am a hot mess. Being at the hospital daily is not easy. It has been a long time since I have had to navigate a large bureaucratic system, and I don't feel like I am doing a great job, especially since I am not at my best. It's a tug of war. I don't want to be a pushover, yet there is a fine line with being aggressive and pissing off the people who care for your child. I keep hearing Mary Jo in my head, "be assertive not aggressive." So it is not uncommon for one of the hospital staff to see me crying about some incident or the fact that Elena's diaper hasn't been changed or the fact that she doesn't get non-medical touching if I am not there - these things are tantamount to negligence in my book. Okay, not uncommon is stretching it a bit, but I have been known to have a few episodes (I don't see any of the other mothers crying).

At the same time I don't want to push the nurses too hard because they are truly excellent, and though they cannot give Elena the care that I would give, they are doing a good job and I cannot go behind them and question them every step of the way without making them pissy. I am trying to find my way. This gets harder because Elena is not getting cared for by the nurses that I have requested (like the primary Monica). Yeah Monica the savior is a dud because no one is scheduling Monica to take care of Elena. So right now I am frustrated and upset, but happy because of Elena's progress.

Like I said, I am trying to find my way.

Saturday, January 3, 2009

Happy Belated Holidays

Hey all-

Sorry for the lack of posts over the holidays- it was hectic. Happy Hanukkah, Merry Christmas, Happy Kwanzaa, Happy New Year.

Where to begin? Elena enjoyed the holidays. Thankfully, Christmas was quiet and New Years was a little rocky but semi-quiet. She is comfortable and stable at the moment. She had a surgical procedure on Tuesday Dec. 30th which she took like champ. The doctors and nurses said it might take her 24 hours to come out of anesthesia (just to be on the safe side so parents don't lose it if it takes that long), but Elena is gangster. Within 4 hours she was moving around.

The surgery was to close a heart vessel that should be open at her age. With the vessel closed she should get better lung and kidney function - yay! So on Friday the attending physician said she only has the "disease" of prematurity. She needs to grow and get better and that's it. So grow Elena.

Sunday, December 21, 2008


I can breathe today. For the first time Elena and I made eye contact. OK, well I'm exaggerating, but she totally opened her eyes today and was super alert and had her eyes fixed on me. I know she probably can't really and totally see me, but she knew I was there and she locked in on me when she did open her eyes. This was the most alert we have seen her. I am ecstatic and have been smiling since I saw her. She is stable now, oxygen pretty low and still intubated, but the universe has delivered her a nurse.

Yesterday I finally met Monica the nurse. She is a NICU nurse that was present when Wong the guru respiratory specialist put Elena on the the jet ventilator to clear up her PIE. Monica learned Elena's settings directly from Wong and claims she went home that night and researched all about jet ventilators. This was last week Monday.

I arrived to the hospital yesterday and found a little note card attached to Elena's incubator that stated how Elena should be cared for because she is labile (changeable) and prone to going way down on oxygen absorption. It noted at what level to suction Elena, to turn up oxygen settings when changing her, suctioning her and I thought to myself, who took this upon themselves to do this?

It was Monica. Monica was thorough with me, explained as well as she could Elena's setbacks, progress and how to understand her new machine. This is also the nurse that Elena was smacking last week. Anyhow, Monica expressed that she knew the jet well and that she was there when Wong was setting Elena up and that she knew what Elena liked, did not like, etc.

She then told me I could speak with the charge nurse, who is responsible for which nurses take care of the babies, and request Monica be Elena's primary nurse which means that whenever Monica works, she is Elena's caretaker/nurse. So that's what I did yesterday.

When I arrived today Monica was working and I almost cried when I looked at Elena. Monica did a thorough scrub down on Elena who had been boogery, dry and generally needed to be cared for, like I would. Elena was glowing. Her dead skin was gone, no crusty blood or boogers in her nose, her hair had been wiped down and Bacitracin added to the places where she had dried skin that turned into scabs.

Elena is responding to Monica's care and getting better. This was a good weekend for Elena who is now less ornery and irritable (apparently preemies with respiratory distress are generally irritable) and I am basking in Elena's progress today.

Tomorrow is a big day for Elena, as most Mondays and Fridays the doctors make big decisions on care for the week.