There Can be Miracles: One Step at a Time

And I thought I was getting bad at posting blogs while Emma was still in the NICU! I'm assuming people understand, though. Not only do I have a newborn to care for as a first-time-mom, but she's a preemie. She's still not even supposed to be here for another four weeks... that's crazy!

Since she's been home... it took us a while for our nerves to settle and for us to get used to her being here. As expected, we would constantly check on her after every sound she would make, but that has given way to a more relaxed approach- we're learning her hungry sounds vs. her gassy sounds vs. her awake sounds vs. her noisy sleep sounds. She makes lots of noise. I told hubby he'd have a difficult time sleeping when she's home because of how much noise he makes and how light of a sleeper he is, but it's amazing what a little sleep deprivation will do to your ability to sleep through sounds. Luckily my mommy instinct prevents me from sleeping through noises so far.

We're finally sinking into somewhat of a routine with her- we're still taking turns with her feeds and helping each other out as much as possible. That part has been just fine- start warming the milk/formula, change her diaper and sometimes her clothes and blanket, mix up her bottle with her cereal, gather everything we need (for me, the boppy, burp cloth, my phone so I can track her feedings, and some water), and sit down to feed our typically ravenous baby. She's been doing well with the three hour schedule, although a few times per day she gets hungry after about 2 1/2 hours and we feed her early, so our feeding schedule changes daily. It's a mix of every three hours and on-demand feeding and it's working so far. She still has about one feed per day in which she can't settle down afterwards and ends up hungry shortly thereafter. I think some of the settling down issues are from gas, but I'll elaborate on that little situation in a bit. Overall, we're getting much more comfortable with her and enjoying her presence. It's amazing how frightening a preemie can be, especially when you wouldn't know what to do if she was a full-term baby! I just need to learn to trust my instincts more, which is slowly starting to take over. I realized that I can't replicate the NICU, nor should I. We need to figure out what works best for us and her within the constraints of our home, and that's what we're trying to do.

Brady's: Friday night and yesterday (Saturday) were very rough for us. So rough, that I think both of us were on the verge of a nervous breakdown- especially me. And it all had to do with nipples, go figure.

The NICU sent us home with a ton of stuff- basically, anything consumable in her room could go home with her- bulb syringes, diapers, wipes, formula bottles... even if it was never opened. They gave us a bunch of the disposable orthodontic nipples they had been using for her that she seemed to like. If you recall, she had issues finishing her feeds for a while there and it seemed that she was able to finish them better with those nipples. We were told they were Nuk nipples, so we went and bought some nipples (to use on her nurser bottles that we stored my breast milk in) and some bottles (to use later on when we used up all of the milk stored in the nursers and were onto the bagged milk). So we used up all of the ones they sent with us and started using the ones we bought... up to that point, she would have a Brady during feeds a couple of times per day, usually from choking. Once we switched to the nipples we bought, she seemed to start having more and we were worried. Someone who is not only familiar with our situation but has walked in similar shoes (cough... Dawn... cough) suggested we try Tommee Tippee bottles, which we just so happened to have in her closet! I was worried that she would tucker out too easily on them since they are supposed to mimic breastfeeding, so we had decided initially to wait to use them until she was a little stronger. But upon her suggestion, I busted them out of the closet...

Her first couple of feeds on the TT bottles went great: no Bradys and she was able to finish her full feeds. But suddenly, and I mean suddenly, things took a turn for the worse. She started having more Bradys, and these were scary. Her early morning feeds on Saturday seemed to nearly kill her- thank God for the monitor. She would suddenly just stop breathing while trying to feed and then her heart rate would plummet and she would turn blue. We would then sit her up and pat/rub her back to stimulate her, but it wouldn't work like it did before. We would blow in her face and she would take a breath or two and her heart rate would increase, but then it would drop right back down again. This would happen two or three times in a row each time. I was terrified. It's such an awful thing when you feel like you can't help your baby, but when you're literally watching your baby start to die in your arms, it's the worst imaginable feeling in the world. After two feeds in a row of such terrible Bradys, I felt like we were failing and wished she was back in the safety of the NICU. I started researching feeding bradycardia online for probably the twentieth time and read so many stories of babies in the NICU who wouldn't respond to gentle stimulation and the nurses would start a nasal cannula or CPAP on the baby. Well, we don't have those things here... so what do you do when you can stimulate the baby back to breathing/normal heart rate? You do CPR. Just the thought of having to do CPR on her and call 911 makes me sick to my stomach.

After her 5am feed on Saturday morning, she was very fussy and gassy and wouldn't settle down. Hubby took that feed and she had one of the scary Bradys, so the alarm woke me up and I shot out of bed like a rocket. I sat on the floor in front of the couch for the rest of the feed as both of us were terrified and worried about her. After the feed was finished and she wouldn't quiet down, hubby jumped out of bed and said he'd sleep on the couch so we could shut the bedroom door and I could get some sleep. I had done this for him a few times, so he decided it was time for me to get some sleep for once. It was difficult for me to let him at first, because my instinct is to be within ear shot of Emma at all times and having a closed door between us so I could sleep felt very counter-intuitive. Once he shut the door, I broke down and cried myself to sleep for a number of reasons: I was exhausted. I was hormonal. And I was so worried about my baby girl.

In the midst of my online research, I found that the TT bottles with the slow-flow nipples clog easily when you try to feed milk/formula with cereal in it, which we have to do for her reflux and choking. However, TT makes a variable flow nipple that it supposed to work well with thickened milk/formula. In the morning, I brought it up to hubby, who offered to run to Babies R Us, which is really nowhere near our home, to get the nipple and some gas drops. I also called the on-call doctor to find out if there was anything else we needed to do for her Bradys and to make sure that she could have gas drops since she's a preemie. The doctor was very kind (but interestingly it wasn't a doctor from our pediatrician's office that was on-call) and took plenty of time to ask questions and make sure he understood her background. He said that we needed to just keep monitoring her bradys and if it started taking much longer to revive her, then we needed to call back. And she was also allowed to have gas drops- Hallelujah! But I struggled through the call because I was fighting back tears. I had actually cried pretty much all morning for the same reasons mentioned above. I was beginning to wonder how we'd make it through this if it didn't stop...

Hubby finally returned from his shopping trip just in time for me to feed Emma, who was so hungry that she was trying to eat everything she could get her mouth on. She at least has good hunger reflexes so there's no denying when she needs to eat! I waited to feed her so we could try the new nipple in the hopes that she wouldn't have another scary episode. And wouldn't you figure, Babies R Us was completely out of gas drops. So he stopped at Publix on the way home and snagged the last bottle they had... is everyone's baby gassy right now or something? Or is there going to be a prohibition of gas drops? Sheesh! I quickly sterilized the new nipple and got Emma ready to eat. Once that bottle got to her mouth, it was like night and day. And then I started to piece together what I thought was causing her bradys before...

I noticed that she would vigorously suck on the TT bottle with the slow flow nipple but wouldn't end up drinking very much. And it was always towards the beginning that she would brady, which is when she sucks the most eagerly. So I think the nipple would clog and she would sit there sucking away and collapsing the nipple, and her coordination would get thrown off. I think this is what would cause her to stop breathing, which would make her heart rate crash. Once she got the new nipple, her coordination was perfect and she was able to finish her bottle in a normal amount of time with normal effort. And with no bradys. I was so anxious at the beginning of that feed, but by the time I noticed how different she looked and how well she was doing, I finally relaxed. And she's done great ever since- we're almost at 24 hours without a brady!

So that was my first new-parent breakdown moment. I guess I had good reason for it... after all, my baby was almost dying when we were trying to feed her hungry little belly. I'm hopeful that we can put that behind us now that we have gotten the right materials for her feeding. We'll see!!

About that gas... poor Emma is so gassy! It kept getting worse throughout the day yesterday, to the point where she was actually crying at times. And Emma doesn't cry for nothing- after some time in the NICU, she wouldn't even cry when they pricked her heel- she's a tough cookie! I felt so awful for her because it was obvious how bothered she was and how much pain she was in, to the point where she couldn't settle down and sleep. But finally, the gas drops started working and she calmed down last night and got some sleep. So now we're at the point where her gas has improved and her bradys are so much better... we're all a lot more relaxed now! But she's tuckered out on a few feeds recently and has been stubborn about taking her full bottle at times, causing us to have to give her the bottle over the course of an hour to an hour and a half and give it to her whenever she's ready to take it back. But we'll get it worked out!

Pumping. Ugh. I still hate it. Hate it, hate it, hate it. But I don't know what to do about breastfeeding since she's been tiring out on some of her feeds lately. She also doesn't like to breastfeed, so I'll probably need to buy a shield or something. She'll latch on and start sucking, but then gets upset and pulls away and fusses. I'll talk to her pediatrician about it this week- they have a lactation consultant on staff so hopefully I can work with her and get this kid breastfeeding. But until then, I'll keep on pumping. I really don't need to store any more milk- we just bought a chest freezer for the garage because my breast milk was monopolizing the freezer in the kitchen. I filled up five gallon-sized ziploc bags and there's more still in the freezer in the kitchen. I must say, it's pretty impressive ;) So at least we'll have plenty of stored milk for when I go back to work!

Picture time!!

The night before her discharge, in daddy's arms.

Our favorite night shift nurse made this for Emma :)

Her room, with all of the machines, gadgets, and wires.

This is her monitor screen. I won't miss the sounds it made.

She was down to two wires at the end- one for her O2 sat and one for her cardiorespiratory monitor.

Her room, looking out into the halls of the NICU.

This was my little corner in her room. The couch pulled out about six-eight more inches to make a "bed." The yellow thing is a breast pump that they kept in the room so I didn't have to lug mine around.