Sunday, July 5, 2009

many shades of blue

Mary Louise and David are both doing well in their radiant warmer NICU beds. Brent is here now and our little family is together again. Mary Louise's eyes were examined yesterday and the doctor then decided that he would post-pone the surgery for a day or 2 and just keep examining here eyes frequently. OK, one could ask,"why would you demand a holiday, weekend emergency air transport if it was not in fact an emergency? Why would you uproot the other half of a family that has already been through so much if it was not necessary?" I won't ask these questions however, because that will surely drive me (the rest of the way) insane.

So, we are all together again in the little Tulane, Lakeside hospital. I would like to graciously commend the night nurses from the last 2 nights as they have been incredibly attentive in taking care of (me and) David and Mary Louise. I can't believe they got me to go back to the hotel to sleep before 1am - 2 nights in a row! David's nurse sings to him and pats him until he falls asleep. Mary Louise came here with a huge rash due to the Tegaderm that was (YET AGAIN) plastered all over her tiny chest and her nurse began care for that immediately - without me even fussing - and posted signs all over her bed and chart not to use that product anymore. After a very rocky start, we have hit a rather smooth patch.

David is off of ALL respiratory support!!! For the first time in all of his 76 days, I got to see his face!! I am so so excited for him. It's so quiet around his bed now - I wonder what it sounds like to him. He is doing well on feedings (thank goodness for that because I seem to be flooding their NICU with milk - I don't have any other place to store it and I hear their freezer is quickly filling up). He is still being gavage fed for now but the occupational therapist here has plans to work with him next week on nippling. Exciting progress for our little guy. He is now 3 pounds 5 ounces. He was started on diuretics again yesterday for his lungs so he will probably loose a bit more weight, but he is making good progress all the same.

Mary Louise nippled all of her feedings last night while we were there. Unfortunately, both she and David have apnea of prematurity and sometimes stop breathing during feedings so we must be alert for signals of distress at all times. No parent should ever have to witness their child turn blue - multiple times - in the same day. My poor mother couldn't stand it. I must admit that it is hard to remain controlled and calm while my babies just go limp in my arms. All I can do is sit there, stimulate them, and try to get them to take that breath. I'm hoping that with a little practice and time, we can all learn how to minimize their episodes and they will eventually grow out of them altogether.

Mary Louise is 3 pounds 14 ounces.

Off to the hospital!

Love, Heather


  1. Sounds like good news for today! I have been following you blog on my phone as I was out of town the past couple of days. You have to love technology! I aa so so very glad to hear David is doing well and Mary Louise has escaped surgery for now. At least the can keep a close eye on her and operate quickly if necessary, I hope they don't have to. So happy that you guys are all together again. You and Brent and your babies of course have been through so much. It is so great that you have one another to lean on. So great the your mom can be there too. We are praying for all of you to have strength and for the little ones to heal rapidly. Thanks for keep us updated. Blessings!

  2. So happy things have smoothed out for now! That helps make things easier.
    AMAZING! AND BIG CHEERS for David!!!

    if they run out of freezer space, maybe offering donating your milk as donor milk...that way some less fortunate baby can have breast milk; lowers the risk for NEC... if they run out of space and you can't freeze to take home... better than pump and dump =D

  3. With my premature daughter they had us feed her in a side lying position. It was to help with the apnea and also to help transition to breast. You have your arm along their back and hold the back/base of their head with your hand in the c-shape and hold them in a semi upright and on their side position The legs sort of go to your belly or side. I cross my leg and use the high leg to support the whole thing (and pillows help). this way the milk will pool in their cheek if they stop swallowing instead of flooding their throat. It may help, maybe the OT has some other tips or can help show you the side position (actually we have pics of our first nicu feeding that I could send). I also remember them limiting us to 20 mins per bottle feed so that not too many calories were burned, had to keep the weight gain going.

    If the babies are in isolettes still you could maybe put a blanket over the top of the isolette to block light. that is what we did to keep stimulation/light to a minimum, the sides were still open to let in some light. Are they wearing clothes yet and getting close to maintaining temperature? That is a fun step, to be able to dress them.