The Power of the Magical Blue Nipple

Ok, ok I know this blog is REALLY late, but hey I am a first time Mom with a baby to care for at home…Yes, you read correctly Brenna was discharged from the hospital on Tuesday-& yes it did come a lot sooner than I expected (I guess I blinked….). It took almost a week for me to be able to settle into a routine & get some sleep-there are no monitors at home so it took that long to have faith in the fact that she would keep breathing (Kevin & I actually had to have a conversation about this…..). Of course, I mean sleep in the loosest sense of the word, incremental naps is probably a much better description, but at least I do feel as though I finally have the brain function to put semi-coherent sentences together (but really, you should be the judge of that because I could be writing in martian for all I know…). To put your minds at ease (& I still keep reminding myself), do know that our little Bean had a wonderful & very good team of Doctors & Nurses & that they would by no means have let her go home with us if there was any reason for them to think that she wasn’t ready. As for us being ready, well……
This time last week I had hit a wall & honestly thought that Brenna had too-there was even talk about her going back on the feeding tube because she was having a hard time taking all her feeds by bottle & she was taking only the bare minimum at each feed. While other babies her age were happily still relaxing en-uteri, we were asking her to breathe, keep warm & eat all on her own- maybe we were asking her to do too much. She was, after all, only 35 weeks old & still so little (as the Dr’s kept reminding me-never a good sign…). I was beginning to feel as though we were never going to leave the hospital, & as much as I tried to be optimistic (after 2 months my sanity was starting to depend on it…); I know everyone around me thought I was nuts & believed that we were going to be there for the long haul. Life in the NICU is, after all, a marathon- set backs are to be expected & (in all fairness) I was told we were most likely going to be there until she reached term-I should have expected, no, I should have hoped for only another month in the NICU. As my Dad once told me- ‘hope in one hand, shit in the other, see which fills up faster…’-all I knew is that the diapers (if not hands), were getting very full very fast……as optimistic as I tried to be, it was beginning to seem like we were never going home. Ever.
Dorothy may have had her red ruby slippers to get her home, but unfortunately (& trust me, I looked…) fancy foot ware is not something easily found in a hospital, let alone in the NICU . Ok, so yellow brick roads, flying monkeys & wizards aren’t so easily found either (I could argue for a Wicked Witch or two….), but there was a ‘Good Nurse of the East’ (or Naomi as she is also called) & she had something better than amazing heels (I can’t believe I said that….)-behold the magical blue nipple (insert angelic singing here) & it’s awesome power to get one baby home (insert more angelic singing here.) Instead of throwing in the towel just yet, Naomi suggested that we try Brenna’s next feed with a hi-flow blue nipple (versus the wicked low-flow white nipple we had been using) because maybe the problem wasn’t with Brenna remembering to suck, swallow, breathe & repeat, maybe it was that she was just tired from working so hard to eat. Naomi said this at the end of Brenna’s 9 am feed, one that Brenna had barely finished & had only finished after both Naomi & I had tried to feed her. I was willing to try but I was not expecting much-maybe I had begun to doubt the super specialness of my little Bean….What was I thinking?! A 4 ½ pound baby proved just how super-duper & extra special she really was, not only did she take her next feed in record time, she had eaten more than ever before! Through the very small hole of the magical blue nipple I could see there was light (albeit faint) at the end of the tunnel, end of the yellow brick road, end of the whatever-home was no longer a distant land (or tornado) away. From that feeding on Brenna continued to increase how much she ate, that evening we were at 60mL, or the amount that ‘babies that go home’ eat. This was all last Sunday morning, Monday we were asked if we wanted to room-in with her (which is a whole blog itself….), where we stay in a room with her over night at the hospital to see how she (& we) do. Tuesday morning the phone in the room rang ”‘what do you think about going home today?”
The diapers may have been full (& a little stinky…), but behold the power of the magical blue nipple & it’s awesome power to get my baby home.

Are we there yet...?

Well it has been quite an eventful week-little Bean is getting to be a big girl! Not only has she doubled her weight (4 lbs 4 oz!), but she has finally graduated to a big girl bed (open air bassinet)! Don’t even think that that is all our little ‘overachiever’ has been up to as last night she officially lost her feeding tube! So the countdown to homecoming has officially begun!

As I had mentioned in my last blog there are four criteria Brenna must meet before she is allowed to come home:

1. She must breathe on her own/no A’s & B’s (apnea bradicardia-or forgets to breathe)

2. She must maintain her own temperature

3. She must take all her feeds by breast or bottle (no gavage feeds/tube feeds) &

4. She must consistently gain weight (on a 22 cal or lower feed).

First all the good news, & don’t worry it is a much longer list than the not so good news list which I will get to later.

1. Brenna has been sans snorkel gear (CPAP) & had her caffeine stopped last week (preemies are given caffeine to help remind them to breathe) so she is/& has been breathing on her own for over a week(ish). However, before she can go home she will have had to go at least 7 days without any episodes of A’s & B’s (not breathing.) Brenna had a few episodes initially, but luckily each of these were ones that she self recovered which means that she began breathing again on her own or she began breathing with some stimulation on her back (think baby back rub). The good news is that she has been episode free since the 17^th, 3 days down, 4 more to go! Now, this sounds a lot scarier than it is (not breathing?!) , as these events last no longer than 20 seconds & (as far as I know) do nothing more than cause a brief heart rate drop. The main cause of this is that she is premature: her brain/nervous system has not fully developed but will correct itself in time (this is not an issue in term babies unless there is something wrong with them-abnormal). When she is done cooking (so to speak, hey I am a chef) she will no longer ‘forget’ to breathe.

2. Brenna has been in an open-air crib for almost a week now & has had no problems maintaining her own temperature. The best part about this (besides the fact that she is one-step closer to coming home) is that she can wear clothes & that we can pick her up & hold her anytime we want to! Which reminds me, I still owe y’all a picture of her in her ducky outfit…..On second thought, look up cute in the Dictionary & if there isn’t a picture under the definition of cute, well then you probably need to buy a newer edition….J

3. As of last night, Brenna finally lost her feeding tube, which means that she has taken all her feeds by bottle for over 24 hours (she eats every 3 hours). Again, this is something that comes with maturity, somewhere between 34 & 36 weeks (Brenna was 35 weeks yesterday) babies begin to acquire the ability to suck, swallow & breathe. She must be able to take her entire feed within 30 minutes by bottle or breast. This is a lot easier said than done, I did not know that (in preemies anyway) this is a learned behavior. What I also did not know is that, apparently, a parent being able to teach this skill (for me anyway, did I miss the class on this?!) is one learned through much trail & even more error. I figure that between my bath time exfoliating blunder & my many initial failed attempts at feeding her (think baby milk bath-or baby milk facial) Brenna will have some of the smoothest & softest skin around……On a personal note, I finally understand why people would cry, cry a lot & then cry some more (with very good reason), over spilled milk….

4. Lastly, & I know what your thinking: ‘with all this good news why isn’t she home?’ So here comes the not quite so good news-Brenna’s weight gain. I know, trust me I know, it seems like Brenna has been gaining weight like a Sumo wrestler preparing for a fight, so what could be the problem?! Initially she was on a 28 cal feed (I think it is calories per mL/cc, but don’t quote me because I am probably wrong -there is a big number 28 on the bottle), but over the past week she has been gradually reduced on the amount of calories & gradually increased on the volume per feed. However, as they make these changes, it is not a zero sum game; there is a reduction in calories as the calories (per something) go down & the volume goes up. Currently we are on a 22 cal feed, & yes as you probably correctly remembered this is the amount she will be Ok to go home on (rarely they will send preemies home on 24 cal), but she is not gaining weight consistently. In the past three days she has been up 9 grams (15 to 30 is average/optimal), up 14 grams & then last night down 4 grams. Not all hope is lost however, instead of bumping her up on a higher calorie feed (read: delaying homecoming), the Dr. instead has ordered that Brenna ‘eat until she can ‘eat no more.’ Let her eat as much as she can (but no less than 45 cc’s) & see if her weight gain begins to stabilize to a consistent amount. What this means (to me anyway) is that the Dr. is still thinking about Brenna going home in the not too distant future, as that is the ONLY reason she hasn’t just been bumped up to a higher calorie feed (ok, this is what the nurse said too).

Well, that is where we are, we should “start thinking about going home”, are “one to three weeks away” & “definitely under a month” to homecoming depending on which Dr I corner & force some sort of vague answer from. All I know is that it is getting close to feeding time & that the next four to seven days are critical. I don’t want Brenna home until she’s ready, but let me tell you Mom & Dad are ready (to be done with the NICU at least). Some of the Moms I know who have already gone home all tell me it ‘sneaks up on you’... this is only true in as much as a watched pot finally boiling sneaks up on you (I guess if you have a ill-timed blink…). All I can ask is Are we there yet…?! How about now...?!

Grandma's Perspective

Welcome blogees. Aimee let me get on just to let you know about the most incredible weekend we just had. We went to visit expecting to see Aimee and Kevin's sweet little alien and instead found this adorable baby. Brenna has really blossomed. Instead of just seeing tubes, we could see her face and all her expressions. She is amazing. You can sit and watch her forever. She has learned about 2,000 different expressions and uses them all. We just needed some popcorn and drink to make it complete - we could have sat and watched the exciting drama that goes across her face for hours.

The highlight of the weekend was getting to kangaroo care with Brenna. When Aimee put her up against me, her heartbeat just echoed through my body. Hers was going a lot faster than mine and I was working to get us both in rhythm. Then she put her tiny little hands against me and it was all peace. If you ever wondered what heaven was like, I can now tell you. Talk about a calming sensation - better than any meditation or glass of wine! It stayed wonderful and then, oh my gosh - Brenna stopped breathing! I went into a panic and turned to Aimee and excitedly told her to call the nurse. Don't stop with the nurse, have the hospital call a code! Aimee just leaned over and calmly rubbed Brenna's back and she started to breath again. I don't know if I was more amazed by how it was handled so easily or by watching my daughter take such a command of the situation. I learned to look at both her and Kevin through different eyes. They may have always been mature adults and I just didn't notice, but I sure got a glimpse of it this weekend. Anyway, Brenna did just fine. The first time I saw her she held my little finger and I didn't want to wash my finger. Now after the kangaroo care I don't want to wash my whole chest!

We then went to a shower given by the Firefighters. It was wonderful and we got to meet many of the people Kevin works with and their wives. It was inspirational to us to see so many admirable people in one place and they way they care for Aimee and Kevin. Austin's population is definitely growing by the number of babies, toddlers, and pregnant women present! One of the women who was at the hospital with Aimee, brought her ex-preemie, now totally big healthy baby with her and it was so encouraging to know that would be Brenna in a month. Aimee will have lots of people to turn to for advice. Good thing as every time Aimee asked me a question, I didn't have a clue what she was talking about.

Saturday night was Ron's turn and he got to feed Brenna. Whoa - he was pretty excited, but I don't think he understood what he was in for. Brenna needs to take a whole bottle, but she tends to want to fall asleep about half way through it. Ron found that tickling her foot seemed to work. She would open her mouth in what looked like a smile and in would go the nibble. She does have a mind of her own and when she decides to clam shut her mouth, she means business. It was definitely a nice, slow leisurely meal with little naps in-between courses. It worked as when we went in Sunday morning, Brenna had moved houses! She is no longer in the isolet, but moved to a regular preemie baby bed right out there in the open air. That was all due to the fact that she had gained enough weight. Of course, Aimee had to quickly remake the bed so her sheet and blanket matched her outfit. She looked adorable. It was hard not to keep bothering her and let her sleep.

We left Kevin and Aimee deep in conversation about making the final adjustments for Brenna's homecoming. As I left, I glanced around at some of the other babies and realized just how far we had come. Thank you everyone for your thoughts and prayers. Dorothy

Check out these amazing photos!!!

Thanks to Pete Constantine who is a fantastic photographer, our good friend and fellow AFD Lieutenant who took these amazing photos of Brenna on her last day with the CPAP on!

http://pconstantine.com/#gallery/Newborns/Brenna

Password: BRENNAK

A++

If you are reading the blog I guess you know me, my husband, one of the grandparents or any combination of us. That being said, you know a type A personality, why do I point this out? Well Brenna is the result of the union of two type A personalities from a long line of type A personalities-what does this union get you-super special baby (I do believe that is the correct medical term) that's what. And it's not just a Mother's pride there, that would be adding that she may, in fact, be the worlds cutest baby too, but I digress. At this stage, 34 weeks, Brenna should start to show some interest in sucking/nippeling & start to take part of her feed from the bottle so that she starts to get used to it. She should be (hopefully) having very few apneas (forgets to breathe) maybe off of the nasal canula (oxygen) but still getting her daily dose of caffeine to help remind her to breathe. This is also the point where we would start to think about putting her in clothes & maybe start to think about turning down the temperature in her isolet to see if she can maintain her temperature & one day move on to an open-air bed. Well, all that is what a 'normal' girl her age would be doing, but not my super special girl!
Mom & Dad thought I was nuts when I told them that Brenna's countdown to going home has begun, but we are most likely looking at two weeks according to the Doctor, can you believe it? Brenna is not only breathing room air with no cannula, but they stopped her caffeine today as well. If she has no apnea in the next 9 days she will have checked off one of the criteria for her to go home. Not only is she breathing room air, she is maintaining her temperature at room air is well. In fact, she will be out of the isolet & in an open air crib tomorrow or Sunday at the latest-that will be one more check mark on the list. The final criteria? She needs to take all her feeds by bottle or nipple & have done so for at least a few days, a process we initiated a couple of days ago. Again, my little gourmand wanted to impress & has been taking every other feeding (the entire feed) from a bottle! This may not sound impressive, but keep in mind that babies do not develop the sucking muscles/intuition until they come to term (about 37 weeks). Yup, that's my girl-my super special incredibly cute girl-gosh, she reminds me of someone I know.....;)

Better than bath time?!

I know what your thinking-what could possibly be better than bath-time?! I'll tell you in a minute, but first let me get you caught up with what has been going on in Brenna land because it has been an exciting week! First things first if you saw the caption on the picture you know that Brenna hit the magic preemie weight number & is FINALLY over 1500 grams & lost her snorkle gear (CPAP)!! She was breathing room air only, but did have a couple of apneas (where she forgets to breath for a few seconds) so she is on a nasal cannula (same thing that adults use when they need oxygen) just to help keep her lungs open. That was an exciting day, Dad & I hoped to be there for the big event (I mean its not like we live in the hospital or anything...), but unfortunately we were not invited to the CPAP party =(
Losing the snorkel gear is exciting for many reasons: she is a step closer to coming home (breathing on her own!), we can see more of her beautiful face & what is looking like red hair, she can wear clothes and, drum roll please, we can start to bottle & breast feed- let me tell you this (well at least for the first few times) is better than bath time! Daddy had the honors of getting to bottle feed Brenna for the first time while I was at work, I wanted it described in every detail, but ended up having to find out for myself (he can be a man of few words). Right now she is still on the feeding tube & we are only introducing the nipple (both) as a way for her to start associating it (latching/sucking) with being full. It is really cool to see her get it, start sucking & staring up at you while she does it, this, unlike kangaroo time, gives you a lot of Brenna face time. Speaking of Brenna face time, I gotta run it's time to nurse again.....

Temperature is Rising!

Yup, we have hit another Brenna milestone! We have passed the 3 lb mark, can you believe that she has basically had a 50% weight gain in the past month?! What is really neat is that now that she is filling out (& there is still a long way to go) she looks a lot more like a really cute baby and much less like a (hate to say it but a bit alienesque does come to mind) preemie. She is now 1460 grams & if you remember the magic preemie number is 1500 grams so we should lose the CPAP in the next couple of days-this is panning out to be a really exciting week!
The Saga of the Squeaky Clean Baby continues & just got a whole lot more fun-now that Brenna has gotten bigger we have graduated to a 'bathtub!' Of course, by bathtub I mean a 4 qt plastic container (4 qt=1 g, so imagine Brenna taking a bath in your gallon of milk) & for those of you who have not had a chance to meet Brenna-this is a very roomy tub. In the picture above you can see that I VERY generously shared bath time with Dad-he did great but now we are fighting over cleaning rights to the baby! The best part about bath time (& as you know I could go on & on about the virtues of bath time) is that it is really the only opportunity that we get to feel like real parents. With round the clock care we (as preemie parents) feel like visitors most of the time & I know that there can be bonding issues because of this. Bath time is one of the few times we get to do traditional parent things & see her without all her sensors & snorkle gear. Even better is that with each successful bath or diaper change we actually begin to feel as though maybe we are starting to get this whole parenting thing & that maybe we do know what we are doing. For a first time parent let me tell you that this feeling is huge-maybe everything will be ok when all the Dr's & nurses are gone & its just Mom & Dad.......I spent the rest of the afternoon on a parental high note, thinking that maybe we can muddle through this...that is until I turned into the baby aisle at HEB......