What a Difference a Day Makes

Alaina had what we thought was a good day yesterday -- her glucose and platelet levels were up and she was awake and alert -- but last night turned out to be hell. We left the hospital confident that she was doing well but when we got home and called to check on her, she'd done a 180. Her glucose levels were frighteningly low and her platelets had dropped again. In the course of one hour, we went from ecstatic over her progress to terrified about this setback. We've used the roller coaster analogy a lot but there's no better way to describe the super highs and extreme lows we've been going through.

Thankfully, today was a great day. When we called to check on Alaina early this morning, she had stabilized again. When we got to the hospital, we saw that the doctors had gotten a PICC line in which was a huge relief (ironic considering how excited we were to have her original one come out last week!). Alaina had 3 IV lines in when we left the night before which were used to give her everything she needed -- nutrition, medicine, blood transfusions, fluids and more. The problem with IV's is that they sometimes need to be moved and she was running out of places for them to go. With the PICC line in, the IV's are less important. Her new PICC line goes from the right side of her head down to her heart via a vein. In order to put it in, the doctors had to shave the right side of her head. They had already shaved the left side of her head to for an IV so she now has a baby mohawk. It's very cute and quite punk rock!

We spoke to the neonatalogist this morning and she's very happy with Alaina's progress. She assured us that the fluctuating platelet and glucose levels are normal considering what she's been through which made us feel much better. She's been breathing so well that the doctor took her off the ventilator and put her back on CPAP. Alaina's surgeon also came to check on her and said she's doing beautifully. His goal now is to fatten her up so they can do the second surgery to reattach the pieces of her small intestine that are left. So while she's still in critical condition, little Alaina is doing remarkably well considering what she went through just 72 hours ago.

And we can't forget about Gabrielle. Grandma spent the morning with her and said that she had a lazy day lounging on her tummy. She had to have her ears cleaned, which she didn't enjoy, but she's eating like a champ and her doctors say she's doing great.

We know the roller coaster ride isn't anywhere near over and there will be probably be plenty more lows along the way, but we'll take this high while we can.

46 Hours and Counting

I never imagined 46 hours could feel like a month but it certainly can. Yesterday was rough. Alaina's platelet count was still low even though she'd gotten multiple transfusions and out of nowhere, her glucose levels fell. The doctors started giving her what they call pushes of glucose, which are basically straight doses of sugar to boost her levels, but the number wasn't going up. To test the glucose level, the nurse pricks her heel, puts a drop of blood on a test strip and uses a monitor to get the glucose reading. It all takes about 3 minutes. By the end of the day, we started to feel badly for Alaina's nurse because every time she took a reading, DH, my mom and I would sit there with bated breath waiting to hear the result and when the nurse would tell us it was the same or had fallen, it was a huge disappointment. Glucose is extremely important to all of the vital organs and if they aren't receiving the amount they need, they'll start to break down protein and other elements to replace it with. But no one could figure out why the glucose she was being given wasn't increasing her levels. Leave it to little Alaina to become a medical mystery.

Finally at around 7:00, we got some good news from her nurse practitioner. Alaina's platelet levels doubled! They were also going to take her next glucose level from a vein in her leg instead of pricking her heel in case the blood in her heels wasn't giving an accurate reading. We all piled into her room and waited while the NP tried to find a vein to draw blood from. If I were editing one of my shows, I would have added heartbeat sound effects to show how slowly it felt like time was moving. Sure enough, when her reading came back it was 77, which is perfect. To say we were relieved would be the biggest understatement ever!

By midnight, she was doing well enough that we felt okay about going home to get a few hours sleep instead of spending another night on the couches in the NICU conference room. Alaina had gotten some morphine for her pain so she was sedated but when she heard us say goodnight, she kicked her little legs and opened her beautiful eyes as if to tell us not to worry.

This morning, her glucose is a little low again and her platelets are down but the doctors say that's normal since they stopped the transfusions and pushes yesterday after her levels came up. I really hope today will be a good day.

One Day Down....

It's been 26 hours since Alaina got out of surgery and even though she's still in extremely critical condition, she's doing as well as she can be. She was stable all night and her vital signs -- temperature, heart rate, breathing, urinary output, etc. -- are all strong. She's moving around and opens her eyes occasionally so she's alert and active. The two biggest concerns right now are that she has an infection that needs to be treated and that her platelet count (which helps her blood clot) is low. The infection is being addressed with a bunch of really strong antibiotics and her white blood cell count is coming up which is a good sign that the antibiotics are working. A platelet deficiency is normal after surgery since the body is using a lot of them while trying to heal itself so she's been getting platelet transfusions. Her count is now coming up and we're hoping her little body will start to produce them on its own very soon.

DH and I have been with Alaina at Columbia pretty much non-stop since she was transferred there Friday night. Having two babies in NICU's 150 blocks apart isn't going to be easy. My mother came down yesterday and spent some time with Gabrielle so she wouldn't be lonely and DH's mom will be here later this week. Gaby had shown some potential symptoms of NEC a few days ago and the doctors had stopped her feeds and started running X-rays to make sure she didn't have it. So far, everything looks good and she started back on milk yesterday. We stopped in to see her today and she was enjoying a post-lunch nap on her belly and everyone at St. Vincent's is keeping a close eye on her while we're with Alaina.

We're relieved that Alaina seems to be showing signs of improvement but we know there's a long road ahead. We count every hour that goes by and pray that her condition will continue to improve with each one.

An Update

It's been the longest 24 hours of our lives (even longer than the night the girls were born which is saying something) but I wanted to post a quick update. I'm posting this from my iPhone so I won't go into too much detail.

Around 7:00 last night, Alaina was transferred to Columbia Presbyterian. Her X-rays and blood work hadn't changed which had her surgeon concerned. The pediatric anesthesiologist at St. Vincents was out for the Jewish holiday so if she was going to need surgery - which was looking more likely - the doctor wanted her with his team (her surgeon is the chief of pediatric surgery at Columbia, which is a top rated children's hospital in New York and the country so we knew she'd be in good hands). We were told early this morning - on the girls' three week birthday - that even though her intestines hadn't perforated, Alaina's condition hadn't improved so they were going to operate to find out what kind of damage the NEC had caused. She was in surgery for an hour and stayed stable throughout. When they got a look at her bowels, they found two areas of her small intestine that had gangrene and had to be removed. The rest of her intestines look healthy and the doctors think they got everything.

Right now, Alaina is in critical condition and we're hoping to see some progress in the next 72 hours. She still has quite a few hurdles ahead of her but our little girl is proving to be one heck of a fighter. Thank you so much for all of your prayers - she is a very lucky baby to have so many people pulling for her.

The Lowest Low Yet

We got a call yesterday morning that Alaina has necrotizing enterocolitis (aka NEC). Basically, NEC is a very serious gastrointestinal disease where infection or inflammation can cause damage to, or even the destruction of, the intestines. She's in critical condition and we are hoping and praying that her intestines won't perforate which would require surgery. She's on antibiotics to deal with any infections (we found out today that she has an E. Coli infection but we're hoping the antibiotics will take care of it) and the doctors have her intubated so she doesn't have to work as hard to breathe. She has X-rays taken every 4-6 hours to make sure there are no perforations in her intestines and surgeons are on stand by just in case. The good news is that even though Alaina is in critical condition, she's been stable since yesterday but all we can do now is take it hour by hour.

As if that wasn't enough, Gabrielle starting throwing up yesterday too so the doctors stopped her feeds and started X-raying her to make sure she hasn't contracted NEC as well. So far, her X-rays have been clear but she's being fed via IV now just to be safe. The infection she had earlier this week seems to be under control and we're hoping she'll stay NEC-free and will be back to getting milk very soon.

So that's the latest. We'll post updates here when we can and we thank you in advance for any prayers and good thoughts you can spare for Alaina and Gabrielle.

Playing Dress Up

While I was shopping before they were born, I saw so many cute Halloween costumes for newborns but I never imagined the girls would be here by October 31st. But since Gabrielle and Alaina decided to make an early arrival, I think dressing up is in order!

I found these adorable little costumes that are perfect for preemies in the NICU -- they're hats with bibs so they won't interfere with any of the wires the girls have on -- but I can't decide which ones to choose. That's where you come in! The six options are below and there's a poll to the left of this post where you can cast your votes for the two costumes you think we should get for Gabrielle and Alaina. Can't wait to see which ones win!

Ladybug:

Bumblebee:

Ghost:

Pumpkin:

Alien:

Cat:

The Roller Coaster Continues

We found out last night that Gabrielle has an infection. The doctors had seen some abnormalities in her blood work last Thursday and put her on antibiotics as a precautionary measure. Yesterday, they got the results of the cultures they did on her and it turns out she has a bacterial infection. The good news is that it seems to be sensitive to one of the antibiotics she was given and her most recent cultures have been negative. The bad news is that to keep other babies in the NICU from getting the infection, Gaby had to be moved away from Alaina and into a special section with another baby who had the same infection. She'll be there for the next 14 days until the course of antibiotics she's on is finished.

The doctors are confident that the medicine she's on will take care of the infection and she had a spinal tap last night to make sure there weren't any signs of meningitis. Her fluid was clear so that's a really good sign and when Jan and I went to visit her this morning, she looked great and was very alert. We even thought we detected a smile on her face, although the nurse said it could just be gas. We spoke with the head neonatalogist who assured us that Gabrielle is doing wonderfully -- her blood work looks great, her temperature is perfect, she's eating well, etc. -- so we're hoping that the antibiotics will do the job and the infection will be gone for good. And the roller coaster ride continues....