We knew that life in the NICU would be full of ups and downs. Lots of times babies will make progress in one area only to have something else go wrong. Madeline has had lots of ups and downs the last few days. First, the ups. She is responding to Mike and I so much. We sit by her bedside for “touch time.” Every three or four hours the nurses and doctors open her isolette to shift her position, check her temperature, change her diaper, and anything else she might need. Premature babies can only tolerate touch in small doses since, in the womb, they aren’t touched at all. So after the nurses and doctors are done doing their thing, Mike and I get to touch her and speak to her. The last few days, we’ve actually been able to massage her a bit. Because of the fluids and medications she’s on, she has edema. Edema is the retention of fluid in different body parts. She has edema in her legs, head, and back. Our massage is to help break up the fluids so she can pee them out on her own. It’s so nice to be able to stroke her little body! She has the softest skin and hair. The edema makes it hard to get an accurate measurement of her weight gain, although the nurses assure us she IS growing. She has a pretty good grip and will cling to our fingers if we put them in her hands. When I try to pull my finger away, she tightens her grip and makes a face like, “nooo!” She also hates it when her diaper is changed, just like any other baby. Mike has changed her diaper a few times now. The nurses laugh that we won’t always fight over who gets to change her diaper! Most importantly, when Mike and I are with her, her stats are always stable. When we leave, her stats go down a bit, which kills both of us. We’d stay by her bedside 24/7 if they’d let us. It’s so hard to leave, especially when she cries. She DOES cry, although it is soundless because of the ventilator. But her face crinkles up, and according to Mike, Maddie and I have the same face when we cry.
Yesterday morning they completely weaned her off her blood pressure medication, but last night they had to put her back on it because she was having a hard time maintaining her blood pressure on her own. She also “blew a pneumo,” which means another hole developed in her lungs. When this happens, air accumulates between the outside of her lungs and her ribs, preventing her lungs from inflating. This is what almost killed her last week, but luckily the doctors now know how to treat it. They inserted another chest tube to help drain the air, which now gives her a total of three chest tubes. It’s so sad to see these tubes going into her chest, but they are working and that’s what matters. The doctors feel that the ventilator is actually what is causing these holes since a certain amount of pressure is required to help inflate her lungs. They’d like to wean her off the ventilator ASAP, but Maddie has to be able to tolerate it. She is taking a lot of breaths on her own, but it remains to be seen if she has the energy to breathe entirely on her own. Most preemies get too tired to breathe all day. She also has an area in her lower left lung that isn’t inflating all the way. The nurses have a little device similar to an electric massager to help stimulate this part of her lung to get it working again.
Last night Maddie had a bit of a rough patch. Her blood oxygen levels were all over the place, her blood sugar was too high then too low, her blood pressure was unstable, and her ventilator levels had to be raised (which makes it harder to wean her off of it). During a routine blood test it was discovered that her white blood cell count was 18,000 (normal is 6,000 to 10,000). The doctors and nurses feel that all of her problems last night are indicators of an infection, which the raised white cells are an indicator of. An infection can be treated with antibiotics, but it’s always a disappointment when there are set backs, even when they are expected. Maddie has had so many good day in a row that sometimes we get spoiled. She’s been Super Baby, but sometimes she has to be Clark Kent for a while.
Maddie’s nurses are amazing and we owe them so much. They bring her gifts and are so nice to Mike and me. As all the medications I’ve been on wear off, I often find myself needing things to be reexplained, and they are always so patient with me. They give Maddie love all day and night and we are so grateful for all they do. I’ve also rediscovered a couple friends in the nurses. One NICU nurse is a good friend of two of my best friends, and she has gone out of her way to look out for us. The other is a sorority sister I haven’t seen since college (Stacie Weinstein for the USC crowd). It helps to see the familiar faces of people who knew us before all this.
On a random side note, some of you may know that Dennis Quaid’s twins were born three days before Maddie in the same hospital (St. John’s). We were given the option to transfer Maddie to three hospitals – USC Children’s Hospital, UCLA, and Cedars Sinai. We chose UCLA because Maddie’s circumstances were so dire that she needed care as soon as possible, and UCLA was the closest option. Now, in light of what happened to the Quaid Twins (if you’re not familiar, http://www.tmz.com/2007/11/20/dennis-quaids-twins-in-medical-nightmar ), we’re glad we chose UCLA. We can imagine how terrifying it is for the Quaid family.
One other thing. We’ve gotten some of the most beautiful emails and cards from all of you. I am trying to reply to everyone, but it’s taking a while. It’s hard for me to admit, but I’m not at full strength, and when I’m not with Maddie I am usually sleeping in an effort to get well enough to be with Maddie again. I know I say it in every email, but your support means SO MUCH to us. I wish I could adequately express that. We couldn’t get through this without every one of you. It’s not going to be our most traditional Thanksgiving, but as we sit at Madeline’s bedside saying what we’re thankful for, our family and friends will be mentioned right after our beautiful daughter. We hope you all have wonderful holidays and that you keep Maddie in your thoughts and prayers.