Wednesday, November 16, 2011

No more tubes!!!!

 No more tubes!!! We finally made it this far.

Olivia update: So today they were able to completely wean her off of the nitric and O2. They removed her nasal cannula and she is holding her own with her sats. When it came to feeding, we were a little concerned because she would get so mad in the middle of her bottle and would spit out a ton of milk as she ate. Today, they switched her to a Dr. Brown's bottle with a preemie nipple and she ate like a champ. Keep the fingers crossed... we may sneak out with no reflux. The plan for the next couple of days is to schedule her for her heart catheter, which all babies get prior to discharge and a follow up MRI to finish off a research study we are participating in. Then it is on to ccu or the step-down area to make sure we can care for her and feed her so she will grow. They started talking discharge today with what classes we need to take and who will be her doctors at home. The nerves have kicked in but I know we have done well with Nathan and Delilah, so we will just have to be a little extra cautious with Olivia.

Melanie update: So I finally am starting to get back to some semblance of feeling normal again. My feet have finally stopped swelling and my belly although still black and blue doesn't hurt as much as it did a week ago. I am still weepy here and there, and I am very tired of always seeing poor sick kids everywhere. It really is a bummer to always see their little eyes with so much pain already experienced. The most frustrating thing for me so far is the lack of sleep. I know when she is discharged this will just get worse which is why I think it aggravates me that Brett can sleep all night while I have to wake up every 4 to 5 hours to be tortured with pumping. For those of you who have experienced the torture of pumping around the clock, I know you feel my pain. Also a disclaimer... I completely and 100% know Olivia is much better off receiving breastmilk, but couldn't it be the man's job to provide it? As a woman, you carry the child, give birth, console, warm, worry, and on top of that... produce breastmilk.... really? Shouldn't he have to participate at least some? Anyway... enough rambling.
It is very hard to leave her every night because we want to hold and love on her as much as possible. She loves being cuddled or sitting in her swing. It is also hard during the day when a new baby arrives or another one comes back from surgery, because we get kicked out of the room. We patiently sit and wait and hurry back to her side as soon as we can. It seems though that in the past two days, every time we leave they decide to round on her or make huge changes. It is maddening. The other times major things happen is when I am away pumping... another thing that makes pumping even worse. This leaves us with major questions unanswered that we have to wait until the nurse has time to get to. It isn't like Brett and I are going anywhere either. We have spent everyday, all day there since her surgery. The people, we can trust to find us, are the researchers.... they are like vultures. They come from everywhere. There are several studies going on right now to improve care for hlhs and chd kids and we are happy to help. Well, word has gotten out so we are approached all the time in all hallways asking for us to do this or do that. It gets kinda tiring, but according to Brett if it prevents someone else from experiencing this awful journey, we are pleased to help.

Nathan and Delilah update:
The kids are back at school this week after spending a week here with us. There are times they both get sad and want to talk which is fine with us. We have made arrangements for them to come up for the Thanksgiving holidays so we can all spend some quality time with little Olivia. The holidays this year have been nothing like they normally would be, so instead of a big turkey dinner, we may go see a kids movie to take our minds off of what we are missing.

We truly miss all of our friends, relatives and co-workers. We have a lot to be grateful for this Thanksgiving.


  1. Melanie, if it were up to our hubbies to feed the babies, I think they would starve! I haven clue how my husband slept through all of that every night! Congrats on your beautiful baby and family!

  2. I am so happy they are getting all the tubes out...she will be so happy too.

    I loved pumping because it meant that I could let my hubby feed my kids while I slept...of course that doesn't happen until like 4-6 weeks because I still pumped at night. But...once I didn't need to pump at night and produced enough during the day...I took advantage.

    You are at a great place and that is why so many babies come is a good thing.

  3. Man oh man do I hear you on the pumping! I fed my son, Jack, for 9 months (with enough milk stored to last him to 1 year). I had planned on doing the same for Madison. Feeding her was really tough - major reflux, disinterest, etc. I tried so hard to pump... I was successful - quickly storing up. BUT, I got exhausted! I would feed her for 20-30 minutes (yes, it took that long for a small bottle), then have to hold her up for reflux for another 30 minutes (should have been 45), then pump. At night I was getting about 1 1/2 hours of sleep between feedings. During the day, I was lucky if I got any since I had a 3 year old. Anyway, I ended up with Mastitis twice - the second time landing me in the hospital for a week. I was only able to pump for about 2 months (though my milk lasted her a bit longer). I was devastated! But, she had done awesome on her formula (same formula we fortified my BM with) and I know it is more important for me to be healthy for her. I say all of this to encourage you to do your best, but also give yourself a break. These are extraordinary circumstances. Don't exhaust yourself to the point I did!

    Sounds like she is just doing so well! You guys hang in there.

  4. Sounds like everything is moving (quickly) in the right direction. Bumpy starts are fine as long as the recovery is good! Mel, the pumping is horrendous. I lasted 11 months and I still don't know how. I remember waking in Philly to pump throughout the night to have Caleb snoring. I made him take the milk to the fridge a few times just for good measure!

    Olivia looks absolutely wonderful. Keep it up, you're doing GREAT!!!



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