WHAT GOES UP, MUST COME DOWN

Since moving UP to the higher observation pod  C and being a few days post-op, Priya has started to make huge progress with her oxygen saturation and upped feeding amounts. Her PICC line was removed Saturday, and her nasal trumpet was removed yesterday. For the past couple days, she has managed to keep her oxygen saturation above 85% (much improved from 40-50%), and is usually able to keep it in the 90-100% with only a few occasional drops.  She has to work harder than we do to keep it up there, but no more blue lip or blue baby episodes.  She still sounds awful when she breathes sometimes and does something called "periodic breathing," which looks scary if you don't know it is her "normal."  I guess it is something we are just going to have to get used to.  Her overall intake of milk has been increasing steadily without signs of reflux.  She still struggles with oral feeds, but the G-tube takes the pressure off that, and it is something we will continue working on with an outpatient speech therapist. 

Priya had a VCUG today to look for reflux between her bladder and kidneys, because she has had two renal ultrasounds that showed bilateral hydronephrosis.  I went down with her and watched her go through the procedure; she was one tough little girl.  I imagine we get the results during rounds tomorrow.

We got some great news during rounds today!  They are going to keep Priya under observation for a few more days to watch her breathing, but if things continue to look like they did today, she will be discharged by the end of the week!  She was moved DOWN to a lower level observation this evening, so back to pod J!   This means I get to stay overnight with her again!  This is really bad for sleep, but really good for peace of mind!

Mike went back to work this week.  It was really hard for him to pull himself away from her this morning, but fortunately, his schedule today was pretty light, as is tomorrow's schedule, so he gets to kind of wean himself off Priya slowly.  He loves to spend time with her, and she practically melts into his arms when he holds her.  He's a good daddy, and she clearly knows it.  We will both miss having him around as much.

SORRY, BABY, BLUE IS NOT YOUR COLOR

Lots has happened since last post.  Priya was observed and evaluated for reflux, but it is felt that any reflux she has is very mild.  At this point, the doctors feel that her oxygen desats are more due to obstruction from her tongue rather than reflux. So, no nissen procedure.

Priya's oral feedings have been been progressing to 35 cc, so we'll hope that just keeps improving.  She still has to be tube fed the rest of her food, so she got her G-tube yesterday.  It was a harder procedure for me, because I had months to expect and prepare for her omphalocele repair, but I did not plan on a G-tube, and it was hard seeing her go to surgery for a second time within her first three weeks of life.  The surgery went well though, and she seemed to do very well afterwards.  We were pleased.   Then she had an oxygen desat last night, worse than anything she has done beforehand.  She turned completely blue, and it took three nurses to open her airway and get her color to turn back to pink.  I thought she was dying; it was so scary!  Once she recovered from the episode, she was immediately rolled away to another pod for closer observation.  She had no other episodes last night and looked great this morning.  We were so relieved to see her doing so well!  Out of nowhere, she started desating and turning blue again.  Then she started having one episode after another, and each one was getting harder to get her to recover from.  It was terrifying!  She was showing evidence of both obstructive apnea (trying to breathe but unsuccessfully due to her large tongue) and central apnea ( episodes of not breathing due to still being out of it from surgery and left-over pain meds in her system).  They were going to put a nasal trumpet in (a tube placed into nasal passage that bypasses the tongue to hopefully create a safer airway, but sometimes the obstruction is further down and this does not always work).  However, her team thought it was possible that her airway could be inflamed from being intubated for surgery yesterday, creating a perfect storm of inflamation, large, obstructive tongue, drowsiness, and overall inability to maintain an open airway and breathe efficiently.  So, rather than sticking another tube down her throat right away, they decided give her a drug to decrease any possible inflamation.  Hopefully this will take care of the blue baby episodes and then all we will have to deal with is the smaller blue-lip episodes.  It would be nice to get rid of the episodes all together!  A tracheotomy is a possibility if things don't improve, but that will be a last resort.  I am pretty sure we will be getting sent home with a pulse oximeter. 

I used to think the possibility of Priya getting a trach was a horror, but now I know that seeing a blue baby is a lot more horrifying.  I don't want her to end up with one, but I'm not as scared of her having one either.

If she recovers well from surgery and gets her feeds back up to normal and her oxygen saturation figured out, Priya may get to go home as early as next Thursday--just in time to meet Grandma and Granddad.  Fingers crossed!

BREATH, BABY, BREATH!

Forget baby coming home with a pulse ox; I think she might be coming home with another surgery instead.  We have been having more issues with her oxygen saturation levels throughout the afternoon.  She had really thick mucous in the back of her throat and has spasmodic episodes of almost holding her breath.  She will look like she is trying to breathe several times in a row, but nothing comes out of her mouth or nose, and sometimes she looks like she wants to choke.  We've had only one episode that needed medical intervention (oxygen), but we've had numerou1s smaller episodes (way more than what she normally has with bigger swings in saturation levels) all afernoon.  The neonatologist came by, so we talked to her about it, and she said it sounds like she has reflux.  This makes complete sense, because it has been getting worse as her feedings have been increasing!  What this means for her is that the suregeons will likely want her to have a nissen procedure to solve the reflux issue at the same time they are putting in her G-tube, so two surgeries in one.  Nothing is set in stone, because they are still watching her, but I think that is the direction we could be headed.  We really do not want to do an unnecessary procedure, so we are going to talk to the doctors about meds for her reflux first.  The problem is the surgeons don't want to have to end up going in the same area twice.  Also, without the palate the nasal membranes are very exposed and sensitive to products of reflux.  Dang, that cleft is causing us some real issues!  Poor, sweet Priya!

THE G-WORD

So, the weekend was interesting.  The speech therapist was out, and we had new nurses, one of which changed the nipple for feeding to a regular bottle nipple.  Priya seemed to like the new nipple, but she wasn't necessarily more efficient with it compared to her first one with someone who knew how to get her to latch on it.  I was happy, because Priya seemed happier to work with it, but I didn't know better.  The speech therapist wasn't real pleased that someone switched nipples, because it set Priya back a little.  And, it doesn't matter if she likes it, because it's not teaching her how to latch, suck, and swallow properly.  The nipple we used over the weekend just kind of allows milk to dripple out without baby learning proper developmental skills. Without these skills, her speech and eating skills will suffer in the future as well.  So, the speech therapist is really working with her today to work on her skills again.  She had better success on the original nipple than the rest of us had all weekend with either nipple.  Priya still has to work too hard for her food though.

The neonatologist, speech therapist, nurse Crystal (she is her primary nurse who has followed her from her original room in NICU), and surgery had a consult today. The plan after today's feedings is to get her feeds (oral/ng tube) up to full feeds (which will be after midnight).  They had seen reflux on her Upper GI after surgery, but she really hasn't had problems with it since then.  They will watch her for reflux  probably for a day, and then do surgery to insert a G-tube.  If she has reflux, they will do a nissen procedure at the same time they do the G-tube.  We don't anticipate they will need to do both, as she has had no problem tolerating her increases in food up to this point.  Once the G-tube is inserted, they will need to monitor her post-operatively for 4-5 days.  She will continue with speech therapy and oral feeding in conjunction with G-tube feeding.

The G-tube will allow us to give Priya oral food at her own pace without causing an oral aversion due to making feeding an unpleasurable experience due to extended, stressful feedings that frustrate her because she works hard for little reward.  Also, it takes so long for her to get such a little bit of milk from a bottle that we would have to spend all our time on feeding and have less time to work on cuddling and playing and working on other developmental things.  Not to mention, mommy and daddy need SOME sleep!  Right now she is taking 15 minutes to get anywhere from 2 to 17 cc out of 50+ cc per feeding. The speech therapist does not feel that she will be able to keep up with nutritional needs on what she gets orally alone, but we are all hoping she does catch on and only need G-tube minimally.  Another benefit to the G-tube is that recovery after cleft palate repair (when she is one) will be five weeks, so already having the G-tube in place will be a bonus for that.  Let's just hope Priya doesn't treat her G-tube like she did her NG-tube last night.  She pulled it out TWICE!

Besides the G-tube, it is possible Priya might come home with a pulse ox(imeter) to monitor her oxygen saturation.  She has always had these short episodes where she is trying to breath but not doing it.  No one really got concerned about it, because her oxygen saturation was maintained in the 90-100% range.  However, with increased food intake, she has been getting more and thicker mucousy secretions.  She gets really raspy and has more frequent episodes.  She had one episode today that lasted a few minutes, and she started to desat with some slight lip discoloration, so the nurse had to wave some oxygen by her face until her oxygen levels went back up.  FREAKED US OUT!  She had had a lot of shorter episodes today after that.  Sometimes it is nervewracking holding her wondering if she is going to have a longer episode of it again.  It is possible that a lot of the problem is just her big tongue causing airway blockage.  If it becomes too big of a problem, it is not terribly uncommon for BWS kiddos to need a trach.  We REALLY hope that is never something we have to deal with.

POOPING LIKE A CHAMP!

Mike and I are two proud parents over here, celebrating Priya's first poop unassisted by glycerin tablets!  We couldn't be happier!  We had to pick her up a little gift for celebration of both the poo and the St. Patrick's Day holiday as well. 

Her 9:00 a.m. feeding (10 cc) wasn't nearly the 17 cc we witnessed at 3:00 p.m. yesterday, but it was much better than her 1 cc at 9:00 a.m. yesterday!  Her bilirubin is back to a normal level, so her jaundice is gone, and she also seems to stay awake and alert longer today.  They are only doing oral feeds every other time, so her next attempt will be at 3:00 p.m. with the speech therapist.  Fingers crossed!

WHEE!  WHOOPIE!!!

The NICU roller coaster continued yesterday, with really crummy morning and noon feedings with the speech therapist.  Priya was just NOT interested, and she was only taking about 1 cc orally.  The speech therapist said she was just having to work too hard to get the milk.  One problem really does lead to another though.  Firstly, her bowel is still sleepy after surgery, but the neonatologist assured me she is still in a normal range for recovery.  Because her bowel is slow, she's not pooping, and because she's not pooping, her bilirubin is elevated again and she is jaundiced.  Because her bilirubin is up, she is even more sleepy and lethargic for a baby, and because she is super sleepy, she has no interest in putting forth extra energy and effort into her feeding (which is already very difficult for her).  So, that is how the morning went.  It seemed that progress was at a standstill.  The roller coaster got stuck, and we wanted off the bummer ride.

THEN, wonderful nurse Martha did the 3:00 pm feeding...and found a way to help Priya latch onto the nipple...and she drank SEVENTEEN WHOPPING CC's!!  The roller coaster went roaring over a big bump and the parents hands went up in the air, and they screamed WHEE!  WHOOPIE! OH, HAPPY DAY!!!  THIS IS EXCITING!!!  

I hope today is another good day for Priya, because today is a special day.  She is TWO WEEKS old!  Wow, time sure does fly!  I can't believe that I (...moi...me...TANYA) have a two-week-old baby girl waiting for me this morning!  WHOOPIE!!!

WHEE...!!!!!!

Today was a NICU day...the roller coaster affect...ups and downs (...or downs and ups?). 

Priya was hungry and fussy when I walked into her room today.  She seemed very frustrated and was practically devouring her pacifier.  She was wide awake, so I thought THIS IS GOOD and should help with feeding!  When it came that time, the nurse had me try to feed Priya her bottle.  She stayed beside me, showed me what to do, and tried to help me, but Priya took maybe 6 sucks with swallows and then quit trying to latch, suck, and swallow completely.  She was awake but completely uninterested in trying at all.  She only took in 1 cc.  I was so disappointed.  It was hard for me to understand how she could suck and suck all day and night on a pacifier and want to suckle on everyone's shirts, nuckles, blankets, her own arm, etc, but be completely uninterested once she actually got the real deal.  Then I thought, well, she really doesn't have much of a palate to get the swallowing reflex going, so maybe the nipple they are using isn't quite hitting her at the same place her pacifier is. It turns out that those were some good mommy instincts, because after a frustrating second feed with the speech therapist, that is exactly what the nurse and speech therapist decided. So, they decided we needed to start using the same type of nipple they have been using but in a mini form. When it came time for the nurse to give the third feeding, she used the new nipple, but took a few sucks and swallows and quite again.  We all thought she may have only gotten 1 cc out of the bottle. But, surprise, surprise, when it was measured out, she got 5 cc!  So, it looks like the mini nipple did not necessarily help her with her frustration, but it did make her more efficient at getting milk out of the little bit of time she managed to feed.  Progress!  I am really hoping things continue looking up with the new nipple!

The speech therapist did tell me that she doesn't think Priya will be able to nurse.  Her cleft is pretty large, and she will have to work very hard to do oral feeds.  She wants me to continue pumping for feedings, but says Priya going to the breast will only be for my milk supply and bonding.  She says Priya will be able to get something, just not enough for proper nutrition.  She thinks she would enjoy it though and definitely encouraged me to try often for the reasons stated.

Priya's bowel is still moving pretty slowly.  It just can't seem to wake up quite yet.  When they check fluids from her previous feeds (by suctioning with syringe through NG tube), she has quite a bit of residual milk left over.  The good news is they can tell it has started digesting; it's just not moving through quickly.  Her abdomen is still soft and not measuring big, so they aren't worried about blockage.  Her bowel just has the post-surgery blues.  Mike and I were at the hospital all day, and Priya did not manage to have a bowel movement while we were there.  I hope there is some good news about that when I get there tomorrow.

Mike's parents left today, so it's back to the three of us at the hospital.  We were so glad they got to come meet Priya and see what a beautiful and sweet baby she is!  She got LOTS and LOTS of loves while they were here.

Today, the NICU had a parents' luncheon, so we were able to meet some other NICU parents and hear their stories.  Compared to most, we have it REALLY easy.  Even the doctors, nurses, and residents make daily comments how easy Priya is to care for compared to other babies in the unit.  It is good to be reminded of this, because even though my head knows things aren't bad at all, my emotions sometimes tell my head where to go, and I start throwing a pity party for Priya and myself, because I want my little girl to be well and come home with me.