5 Weeks Down

So I guess I blogged a little too early yesterday. I blogged in the evening before I went back for my night time visit and when I walked in to the NICU I did my usual routine, 2 minute hand scrub before doing anything else. As I finished washing my hands a nurse, who I recognized but never actually spoke to because she was never the nurse for either of the girls, told me that one of the girls were moved - she confirmed with me that I was the mother of the Marcino twins and she said it again. So I started walking towards their usual spot with mixed emotions - thinking that Melia had been moved to a "side room" and that Madison was left behind in the main room. But sure enough, BOTH girls had been moved! Both Maddie and Lia were in a side room and this was a great surprise! Being in a side room means that the doctors are comfortable that the girls are completely stable. It's a much smaller and more quiet room - with no new admissions coming in because it's not a critical area - so it's much less chaotic and more calming. I was so excited! What a great step - first Melia is off of the nasal cannula and now they're moved into a side room. I gave Lia her bath and fed Maddie her bottle. I had a great visit with my girls. Yesterday was a great day. This morning, a couple more pleasant surprises were waiting for us when we went in for our morning visit. Melia was in a crib and Madison was off of her nasal cannula! WOW! These girls are moving fast! Looking at Melia, face nearly tube-less, with a full outfit on, in an open crib - with nothing separating her from me - no plastic walls or doors to open in order to touch her - it was such a fanstastic feeling. And then to look over at Maddie with her face now almost completely tube-free also - it was so awesome! Mike fed Melia and I attempted to feed Maddie, but she just wasn't into it. This was strange. She usually does really well with her bottles, but the nurse mentioned that she barely took any of her earlier feeding either. As I held her she continued to have multiple bradycardia episodes. This also surprised me because she always does so well with her breathing - she rarely has a significant brady or apnea episode anymore. But, the nurse chalked it up to her adjusting to being off of the nasal cannula and not having that additional pressure of air flow. This made total sense, so I agreed that this must be the problem. The nurse put her nasal cannula back on for a little while in order to give her a break and would take it off to have her adjust for the rest of the day.

When I came back for my evening visit, I saw her day nurse in the hall and she told me that Maddie had to go back on the nasal cannula for the majority of the day because she was having continual brady/apnea episodes. When I got into the room, Maddie had 2 more episodes within the first 10 minutes of my arrival. At the risk of sounding like a paranoid, crazy mother, I asked the nurse if I could speak with the neonatologist on for the night. A few minutes later the doctor came in and I explained to him how Maddie was just coming off of an infection and was having too many brady episodes for my liking and how constant brady episodes were the first indication of her being sick the last time she developed an infection. The doctor listened to me explain Maddie's history and my concerns for a few minutes and then pulled her chart and her previous xrays, etc. Then he did a quick exam on her and ordered bloodwork and an xray to see if there was anything going on. Sure enough, the xray showed that her stomach was inflammed again, this time with less actual inflammation than the last infection, but covering a larger area of the stomach. Her bloodwork showed that her CRP was up to 3.3 (higher than it was at the peak of the infection last time). The doctor explained to me that once again, it was hard to tell for sure if this infection is NEC because it seems to have been caught at an early enough stage that it's not showing all signs of typical NEC. However, all signs again point to the fact that this is more than likely a mild form of NEC. Other factors are also similar to the onset of the last infection as well - Madison recently had a blood transfusion and her feedings have been increased to 25mls with fortifier added to help boost her weight - not sure what this pattern means exactly, but there is definitely a pattern there and I really REALLY wish that Dr. Kamtorn didn't leave for vacation yesterday. Don't get me wrong, all of the neonatologists are very nice, very intelligent and very capable. I know that Madison is in good hands, but it's a familiarity thing I guess. So anyway, back to square one. Madison is back on antibiotics and IV fluids (and of course, she had her IV removed just this afternoon, so I got to listen to Madison scream and cry as the nurse tried to find a decent vein to put yet anothe IV in to - she's had so many IVs in for fluids or transfusions lately, that she doesn't have many veins left to work with right now - it took 2 nurses trying and several heart wrenching attempts in both arms and feet before they were able to find a workable vein - I won't go into the heartache that this caused me to listen to her cries during each attempt, but I'm happy that my friend Chris, who is a doctor at the hospital, was there visiting with me while it was happening because he was able to console me and be there for Maddie while I was feeding Melia). And of course she can't eat until further notice, that basically being for the 7-10 days that she'll need to be back on the antibiotics for. She'll have another xray and more bloodwork tomorrow morning and we'll see where we go from here. The doctor told me that he'll be keeping a close eye on her through the night and while he'll leave her in the side room and in her isolette for now, he couldn't say for sure that she wouldn't be moved back to the main room by the end of the night. Another loop-de-loop on the Maddie NICU Express.

While everything was going on with Madison I was trying my best to enjoy my time with Melia. I dressed her up in cute little pajama set and gave her a bottle. She took almost her whole bottle and didn't desaturate once. She's doing so well without her oxygen and I'm so proud of her! Towards the end of her feeding she gets tired and worn out - sometime I still try to push to get her to finish those last few mls, but tonight I didn't push her. She was tired, so I asked the nurse to give her the rest of the feeding by tube and I just help her and let her sleep.

Once again we had a great few days and a even better morning, followed by a terrible night. The roller coaster is still at a high speed. I'm still being torn in two, with my concern for Madison overshadowing my attempts to be happy about Melia's phenomenal progress. It's like a severe case of deja vu - I'm just reliving the same experiences over and over again. And everytime I think there's an end in sight, it starts all over again. My poor little girl just can't seem to catch a break and it's just so unfair.