42 days old

Saturday to Sunday was a little challenging because Sean went to work at 3:30 Sunday morning so the 3:00, 6:00 and 9:00 feeds were all mine with both girls. Their special way of feeding because of their preemie status (on their side, tilted with head higher than chest, neck supported so you can feel their breaths just in case) means that I need both hands to feed one girl. Neither was in a terrible hurry to eat so each feeding was 45 minutes, times two, with pumping afterward. That left me an hour to sleep before doing it all again. I am so glad that he's taking the next three weeks off because I can't do the nights like that for long before dramatically losing IQ points.

When it was just Lilah, Sean and I would trade off feedings, but with both girls, we're each up every three hours to feed them. Days are fine because we can do chores or take naps in between feedings, but the nights are harder. Unfortunately, we're not hearing any volunteers for that task. We do think we're going to have to institute a trade-off for visiting: Call first and either bring food or do a chore in order to hold a kiddo. With all that goes on during our days we realize that we forget to eat and then are too lazy to actually fix something or ourselves. If it comes down to eating or sleep, that bed wins every time.

This is going to be an adventure. But who can hold it against babies this adorable?

(Charlotte - pink, Lilah - purple... we're starting to color code them as much as possible)

40 days old

Charlotte is home!!

39 days old

What a week. Sean and I are utterly exhausted, but not for the reasons you'd think. We settled in nicely to having Lilah at home, taking turns with her night feedings and adjusting to having her around. For the most part, she eats and then falls asleep quietly until her next feeding - Sean even looked up at one point and said, "You know, for a while there I forgot we had a baby here!"

On Tuesday I took the afternoon off from visiting the hospital and Sean went to see Charlotte instead. It was the first time in almost 3 months that I hadn't been at UWMC! I stayed behind and relaxed with Lilah and gave her a wonderful bath. When Sean got home, we had some dinner laid down on the couch with Charlotte in the crook of my arm holding Sean's finger in one of her tiny hands.

She started to stir a bit because it was time for her next feeding when suddenly she gave a small cough, got wide-eyed and stopped breathing. Her arms stuck straight out and her whole body was rigid from head to toe and she almost immediately started turning blue. We both watched her for a few moments, thinking that at any second she'd catch herself and start breathing again, but she didn't. As she continued to turn color, I rolled her on her side in case her airway was blocked and patted her on the back. Nothing. Sean grabbed her and put her face down in the "recovery" position and patted as well. Nothing. Now she was turning grey-blue and was still stiff as a board, wide-eyed and still. I went to give her mouth to mouth but realized we still weren't sure if her airway was clear. It had been about 30 seconds, but seemed like forever, when Lilah finally took a single breath, gave a huge cry, and stiffened and stopped breathing yet again. She was so stiff that Sean didn't even need to support her head since it seemed to be locked in place. She did this another 4 times and meanwhile Sean said, "call 911", so I grabbed my phone and called, ran down the hallway and grabbed the bulb suctioner. I was giving information to the dispatcher and trying to suck out anything in her throat, but came up with nothing. After 5 minutes, the ambulance pulled up and Lilah had started breathing again on her own and her color had started coming back. She was crying on Sean's shoulder when the medics came up. Since she had recovered, they gave us the option of driving her to the hospital ourselves (I think this was the smallest patient they'd ever had and it made them nervous) so we packed her up and hit the road.

(Apparently when you or I hold our breath, we have reserves and can wait for quite some time before breathing again, but infants don't have those reserves and stopping breathing immediately creates a reaction like the one we saw.)

I sat in the back seat with her, watching to make sure she kept breathing along the way, and we headed to Group Health 24 hour urgent care at Overlake. They checked her out and then arranged to transfer her to Children's Hospital for observation. I got in the ambulance and Sean went home to get a few things (I needed the breast pump gear and Lilah had pooped on my sweatshirt and herself) and let the dog out, and then met us at Children's. We spent some time in the ER being evaluated - she had her vital signs taken several times, which irritated her to no end since it meant undressing her each time - and then they moved us to a room upstairs.

It took another hour or so to get situated in that room, shared with another family with a baby, because of the molasses pace of the nurse. When we finally got a 40 year-old cot and a broken reclining chair brought in to sleep on, it was 4 am and we were nearly numb from exhaustion. I slept for an hour or so until Lilah woke up making noises in anticipation of being fed. We spent the next several hours talking to doctors and waiting for word on what would happen next.

The doctors theorized that Lilah has reflux and her airway shut down to protect itself from something she may have coughed up. I'm not sure I'm entirely confident about that diagnosis since the result was so extreme and she had never exhibited any symptoms while in the NICU, but they sent us home with an acid blocker medication and a foam wedge for her to sleep on so she wouldn't be flat on her back. When reflux occurs, it weakens the esophagus, which makes more reflux likely, so this will hopefully stop the cycle. We asked if something we did made her start breathing again or if she would have come back on her own and the answer wasn't very definitive. The doctor said it was hard to say but that she had never heard of a baby dying from reflux. Reassuring?

We got home around 4 in the afternoon and I slept for about an hour before needing to feed Lilah and start our daily schedule all over again. Sean had to work yesterday and had nearly no chance to catch up on the sleep he lost either, so between the two of us we're completely wiped out.

Lilah has been completely normal ever since and shown no signs of any other problems, but we still are apprehensive about leaving her in another room unsupervised. All of the "what ifs" run through my head and I just want to hold her in my arms and make sure she's safe. No one should ever see their baby that color or have to worry about her breathing. It was incredibly scary.

34 days old

Lilah is home!! The doctor and Lilah both lived up to our deal! I called first thing in the morning to find out how her feeds went overnight and the nurse said that she had done wonderfully and the staff had already decided to send her home today. I went to visit her in the morning, not sure if they would really follow through or not, and when they clipped off her security tag I knew it was for real. I got back in the car and went home to pick up Sean so he could take part in bringing our daughter home.

We put Lilah in her car seat and had to surround her with swaddle blankets until she was safe and secure. Keep in mind that this is a normal-sized car seat!

Charlotte is not far behind her sister, either. She nippled every feed starting at 8 yesterday morning, so as long as she continues, she could be released as early as Monday. She is scheduled to get a cranial ultrasound on Monday morning, which is mandatory before she can go home, and tomorrow she'll have the car seat test. Of course, we're not going to plan on Monday since we've heard that story before, but it would be nice since Sean is off Sunday-Wednesday!

Already we can tell that having Lilah home is going to be great. It was not only the earliest I've been home in the evening since April, but in between feedings is pretty much all down time when we can get things done. I cleaned the kitchen and organized her gear to make some of the feeding processes easier - and that is more than I can usually fit in during a whole week! Of course, I did spend much of the evening just staring at her and cuddling....this is awesome!

33 days old

We had the good nurses today, Maureen and Katie, and they always make the day easier. I got to the hospital a little after 9 so that I could attend rounds for Lilah and advocate for her, but they started in the opposite order than what we expected so they were long done by the time I arrived. I went to Charlotte's session around 9:30 and asked them to talk to me about Lilah and they said they'd stop by in a little bit to go over things with me. I didn't go to the bathroom or eat because I didn't want to miss them - and they finally showed up at 3:30 thanks to Maureen reminding them again that I still wanted to talk.

I basically got nowhere with the conversation, big surprise. The doctor said, "Let me make you a deal. Give me until this time tomorrow. If Lilah nipples all her feeds, then we'll talk." Which is essentially where we'd be if I hadn't spoken with him. She ate all her feeds in the last 24 hours except one, and that was only a tube feeding of 10 mL, but that was because she had a desat, which doesn't bode well for our argument. Sometimes she sucks 10, 12, 14 times without taking a breath and then pauses because she's now worn out and has forgotten to breathe entirely. Her heart rate drops and her O2 levels fall. She eventually starts again but sometimes needs a little tap to snap her out of it. When Sean or I feed her, we watch to see if she's taken a breath every few sucks and if she hasn't, we pause the feeding to give her a chance to get a breath and she does just fine. But, not everyone is as diligent about it as we are and so the desats show up and we fall behind another day or two.

Charlotte, on the other hand, is fantastic about pacing herself and even breathes in between each separate suck, just like she's supposed to. Today she ate all of her feedings by nipple and may just be on the road to schooling her sister.

So, I ended up staying all day, feeding them both several times, and at one point commented to the nurse about how it would be easier to do it all if I could get them in the same space instead of going back and forth. I told her they hadn't been next to each other since they were born and she was shocked. She said, "They're both healthy! There's no reason for that! Let's get them together!" I said that I didn't think that was allowed and she said it wasn't a problem. So we detached Charlotte's leads and brought her over to Lilah's space for the first time. The girls were laid next to each other on a pillow on my lap and finally touched for the first time in 4 1/2 weeks! It was so exciting!! Lilah slept through the whole thing and Charlotte was completely alert (a role reversal for the two) but we can definitely tell they're identical. Charlotte's nose is just slightly wider and her skin is paler and more flushed when she moves because of her low hematocrit count, and her hair is thicker and darker. Otherwise, they're twins! Lilah is on the left, Charlotte on the right.

Album: Charlotte and Lilah together

This is one of my favorites because they are in the same position, almost like a mirror.

31 days old

Not a lot of changes to report today except that Lilah and Charlotte both weigh 4 lbs 11 oz - and Lilah is a few grams heavier! Both girls had eye exams today which involved eye drops and holding their eyelids open so the retina could be examined. Little did we know that babies tend to get tired and have a hard time eating for up to a day after the test, which Lilah sure enough did. If we had been told this was a possibility, we would have asked them to wait so we could get them tested by their pediatrician after their release, which was the original plan. They will also change Lilah's nutritional supplements once she is eating normally again, so all that puts her back to at least Friday to be released. These delays are ticking me off.

To top it off, one of the nurses kept giving us a hard time about not having the type of clothing that she preferred. We brought in onesies, both long and short sleeved to layer, pants, hats and socks. The nurse yesterday was excited about these new options, but today's nurse wanted sleep sacks and heavy clothing. But then she wouldn't let it go. I was already upset about the delay with Lilah and she kept harping over and over again about the clothing issue. And over and over again. I finally cracked and told her - "This is what we have. We brought it all in. There is nothing more and there isn't going to be." But then she kept trying to convince me. I said, very angrily, "I get it, but we don't have anything like that. I've looked all over and no one is selling the heavy stuff right now - I've been to Target, JC Penney and Babies R Us and I can't find anything. This is what we have. This is all we have." The other nurse stepped up and told her that now wasn't a good time to be talking about this, since I was starting to cry because I was so upset and trying to keep it together without hurting this woman. Who the eff cares about whether the clothes are perfect? The girls have clothes that fit and blankets and they're keeping warm. I'm not going to create a wardrobe out of thin air filled with things they'll wear twice before outgrowing, just so this woman has her standards met. And I'm tired of arguing about it with some woman whose job I do every afternoon anyway. If she brings it up again, I won't be held accountable for my actions. Grrrrrrr.

29 days old

Charlotte's PICC line has now been taken off since she's eating more than enough to maintain her own fluids and she's also been moved to a crib instead of the isolette! All of this means that she could finally take a bath today and I was more than excited to give her one. After 4 weeks, she surprisingly didn't smell bad yet, but she was a bit greasy. We put her in deeper water because the nurse suggested she might like the floating aspect and sure enough, she really seemed to enjoy the whole experience. She was practically grinning throughout the bath, but the cutest part was when the nurse suggested she have a towel wrapped around her head to keep it warm while we bathed the rest of her. Charlotte looked like a diva in a baby spa!

Poor little Lilah has still had to be fed by tube at least once a day, so her time frame to come home keeps getting pushed back further. She had a visit from the physical therapist today to make sure she was hitting her milestones like turning her head toward noises or repositioning herself when placed face-down, and she passed every test, but it wore her down and so she fell asleep before she could finish her whole bottle. Darn.

27days old

We wanted to plan our day out in case Lilah was coming home, so Sean called the NICU first thing in the morning to find out her status. Unfortunately she had been too tired in the night to take her feeding so they put her feeding tube back in to help her twice. Once they did that, it reset the clock for 48 hours of feeding by mouth. So now she won't be coming home for at least a few more days. What a bummer.

Today Charlotte was 4 lbs 10 oz and Lilah was 4 lbs 5 oz! Charlotte is eating 28 mL at a time and a full feeding is 36 mL, so she should be up to a full feeding Monday or Tuesday. She still can't always eat it all by mouth yet, but she's working on it. At least she's no longer facing any more medical issues!

For all intents and purposes, the nursery is complete and looks great. I still have quite a bit of organizing to do because of the generosity of all of our friends and family, but I'm chipping away at it. I'll post some pictures a little later this week.

26 days old

Yesterday we got the great news that Charlotte had tested negative for everything - the MRSA, the staph and the contrast enema. She is cleared for take-off! She's now 4 lbs 6 oz and eating 26 mL of food 8 times a day, which is increased by 2 mL every 8 hours. In about three days she'll be at "full feeds". They're also working on weaning her to a crib! She is doing wonderfully at eating and has been very cuddly every time her dad and I get to hold her (which is now without gloves since the isolation precautions are off!)

Lilah is 4 lbs 4 oz and just needs to eat every meal by mouth without leaving any behind for 48 hours and then she can go home. We're told that could be as early as Saturday evening, but we're guessing Sunday is more likely. She was awake for almost 3 straight hours today so I took the opportunity to read one of the new kids books to her. They say it helps with familiarizing the girls with our voices and bonding, so I chose The Little Engine that Could and Lilah was mesmerized by the bright, colorful pictures. It was adorable.

24 days old

Here is Lilah in her crib!