Weekend Update

I have not written in a few days, mostly because there is not a lot to report right now...which is great news.

 Lucy continues to eat well and tolerate all of her feeds.  She seems to really like to eat.  So much so that she is starting to wake herself up a few minutes before time looking for her food.  She will usually suck on her pacifier when I am there while she is being fed.  They are even talking about trying out a bottle soon to see if she will take it.

She is still on her nasal cannula.  They usually wean to that, from the cpap, with 3 liters of air flow (not sure what that means exactly, but it is the force of the air going into her nose).  She did so well the first 48 hours they have taken her down to 2 liters.  She has done awesome.  In fact the nurse said a few times today she checked on her and it was out of her nose completely and she was not dropping her heart rate, so that's good!  She's been on 21% air from the start, which is what we breath.

She weighs 2lbs, 13.5 ounces, which is 1lb more than she dropped down to after birth.  Hoping to hit 3lbs in the next few days!!  The nurse mentioned last night that we may get to start putting clothes on her soon and wrapping her up in a blanket so she can learn to control her own temperature, rather than her bed doing it for her.

Today when we went the nurse had accidentally grabbed the extra-small snuggle wrap that she was first in after she was born.  She looked huge in it.  In fact, her legs wouldn't fit so she was hanging out of it completely.  When she was born she fit in it perfectly.  Then she went and got a bigger size and it made her look tiny again!  But at least we know she is growing!  Same with diapers...she is growing out of the teenie tiny ones, but the next size is huge on her.

Anyway, she is doing great right now.  Hoping she will keep it up and sail through this NICU thing.

By the way, for those wanting to participate in the Preeclampsia walk.  I changed our team name from Team Mason to Team Mason and Lucy.  I don't want you to get confused when you go to register or donate.  I finally figured out I could change it, and didn't want to leave Lucy out!  ;)
http://www.blueskycollaborative.com/pfpw/fundevent.asp?nnaffundid=16

Again we want to thank you for your prayers, thoughts, cards, and sweet messages.  We are so thankful for you all!

Prayer Requests:
-Continued growth---that she will tolerate her feeds.
-That she will tolerate the cannula well and go down to 1 liter soon.
-Future tests to be normal
-That Mason will get to see her soon.  he has been asking and so far the nurses won't let him even see her through the window
-For us to get enough rest and figure out a decent schedule that isn't so tiring.

Picture Time~

Snuggling with Mommy

 Lucy with a Monkey that was a sweet gift to her.  (The monkey is very small by the way)

 Just snoozin'

 Wide awake and ready to eat

 Looking at Daddy.  First time to wear a hat.

 Looking a little big chunky in this photo.

 Mason and I on his school field trip Thursday

 Mason with his certificate from music class at UNT

Mason                                    Lucy

Three Weeks Old Today

Lucy turned three weeks old today.  Again, it is very hard to believe she is already 3 weeks old while also feeling like she has been in NICU for a much longer time.

We have had a good week so far.  Lucy is doing well with her feeds still and has been tolerating them well.  Since the PKU scare they have been really cautious about adding in more calories and protein to her feeds like they do with most babies.  However, we got the 2nd newborn screen back yesterday and it was NORMAL so they are giving her a normal diet now.  :)  God answered all of our prayers on this test.

She had lost some weight at the end of last week and then had a big weight gain today.  Some nurses have been weighing her with her cpap gear on and some have not.  So, it is really hard to tell what is real weight loss or gain at this point.  Today with everything on she was 2lb 10oz, but that may not be 100% accurate.

She turned "32 weeks" today and the doctor decided to trial her on a nasal canula instead of the cpap.  From what I understand it takes at least 12-24 hours to know if she will do well on it or not.  She was doing great as of 7:00 tonight and had been on it since about 11:00 this morning.  So we will see.  I hope she does well because she does NOT like the cpap prongs that are put in her nose.  Also, I love seeing her little face better and her full head of hair---I think it is going to be red maybe?

Right now we are just gliding along...hoping to keep this up so she will keep growing and getting stronger.  :)

I really want to thank all of the people who have helped us out with gas money, food, snacks, baby items, etc.  We appreciate it SO much.  You have all been so generous and I wish there was more I could do than just say "Thank you!"  Most of all thank you everyone for your prayers.

Prayer Requests:
-Next brain scan to show smaller/no bleed
- Continue to do well on feeds and tolerate the extra calories and gain weight
- That she'll do well on the nasal canula and not have to go back to the C-pap
-For the nurses and doctors taking care of these sweet babies
- For the parents of the babies in the NICU
-A prayer of thanks for the results on the 2nd newborn screen being normal!!!!

Some photos:

Lucy's footprints finally made it on the board...she has the butterfly!  :)

 Look at that face and hair!  She has her sensors all tangled up!

 Sweet girl.

If you are Interested:

-Since Mason was born due to my Preeclampsia, we have been involved in the local DFW Preeclampsia foundation.  We walk every May in the DFW Promise Walk and raise money to go toward research for Preeclampsia and hopefully a cure one day.  With Lucy I developed HELLP syndrome shortly after I had her (probably started developing the day I had her).  HELLP is a life threatening variant of preeclampsia if not found and treated quickly.  All this to say, we will be walking on May 18th in honor of Mason and Lucy who were both born too early due to my Preeclampsia/HELLP syndrome.  If you are interested, you can donate to our walk or even join our team.  You can go to the DFW page to donate or join the team, Team Mason (Lucy was not here yet when we registered!)

http://www.blueskycollaborative.com/pfpw/fundevent.asp?nnaffundid=16

-Several have asked about bringing meals to us.  One of my sweet friends set up a calendar on a website called Mealtrain.  If you are interested, I am going to direct you there.  Please do not feel obligated to do this!!  I am just passing on the information for those who have asked.  :)  Here is the link for that..

http://www.mealtrain.com/view/?id=%2boIMGalRt50%3d

Weekend Update

Update:
Lucy continues to do well.  She mostly just sleeps and eats, which is a good thing!  She has been put in "time out" by her nurses a few times lately.  :)  She has officially mastered the skill of pulling out her feeding tube a few times a day.  Mason used to do that all of the time too, so she takes after big brother.  There is not a lot to report from the weekend.  She did lose a little bit of weight...probably due to being taken off of the extra fats through her PICC, but also she is now weighed differently (on a scale versus her fancy bed).  There could be a difference in the scales since they don't use the same one every time.  Plus, they weighed her without her gear on last night.  Hopefully she will start gaining quickly again.
She will be "32 weeks" on Wednesday so they will start trying to put the nasal canula on her to see how she does, versus the cpap.  Hopefully it won't take her too long to be switched over.  Once she does pretty well on that we can take her to the window for Mason to see her for the first time.  :)
Most of our weekend was spent entertaining Mason.  He had music class and two birthday parties to attend, so we were busy with that.  It all kind of runs together these days.

If you are Interested:
-Since Mason was born due to my Preeclampsia, we have been involved in the local DFW Preeclampsia foundation.  We walk every May in the DFW Promise Walk and raise money to go toward research for Preeclampsia and hopefully a cure one day.  With Lucy I developed HELLP syndrome shortly after I had her (probably started developing the day I had her).  HELLP is a life threatening variant of preeclampsia if not found and treated quickly.  All this to say, we will be walking on May 18th in honor of Mason and Lucy who were both born too early due to my Preeclampsia/HELLP syndrome.  If you are interested, you can donate to our walk or even join our team.  You can go to the DFW page to donate or join the team, Team Mason (Lucy was not here yet when we registered!)
http://www.blueskycollaborative.com/pfpw/fundevent.asp?nnaffundid=16

-Several have asked about bringing meals to us.  One of my sweet friends set up a calendar on a website called Mealtrain.  If you are interested, I am going to direct you there.  Please do not feel obligated to do this!!  I am just passing on the information for those who have asked.  :)  Here is the link for that..
http://www.mealtrain.com/view/?id=%2boIMGalRt50%3d

Prayer Requests:
-That Lucy would start gaining weight again
- For the next brain scan to be clear or at least smaller bleed
- For the remaining test results for PKU to be in the normal range.  The one we got back already was slightly elevated still (down from a lot elevated)...we want it even lower!
- That she will do well when they start doing the trial to take her off of her cpap and put her on a nasal canula
-For the other babies/families in the NICU.  A new baby was brought in yesterday that was not doing well at all.  Pray for him and his family.
-For the amazing doctors and nurses who care so much about these sweet babies.  The only reason I can sleep at night is because of these amazing people!

Thank you so very much for your prayers!  We can definitely feel them each and every day.

Photos:

Mommy, Daddy and Lucy

Daddy holding his girl

 She's had wide eyes when we come visit this weekend

 Looking at Mommy.  I love this photo!  :)

Annual bluebonnet photos at Grandma and Grandpa's house

Mason and Daddy

Mommy and Mason

Test results

We were not expecting test results for the PKU until next Tuesday, but they came in today.  When I saw the NICU calling I got really nervous.  When I answered it was Lucy's doctor and he said "Mom, I've got good news!"  That is really all I heard and I actually had to call him back later to make sure I heard him correctly!

Basically, the test results came back MUCH better this time.  It was still a little bit above normal, which is common on preemie babies still being given what they call TPN (fats and proteins and such) in addition to milk.  There is no need for a diet change and it looks like no PKU.  We will still do another round of tests now that she is off of TPN in a week or so to check the numbers once more.

We are VERY relieved to hear that the numbers came down so much and there is no diet change necessary. Now we keep praying that the test next week comes back even better!  Thank you all for your thoughts and prayers this week.  We really appreciate it more than you know!  :)

Other than that big news, Lucy is doing great.  She is eating like a champ and growing.  Her bradycardias are now only every once in a while and a lot of times due to her mask being off her nose or something similar.

Her head scan came back still showing a small grade 1 bleed, but it was a little smaller than the last scan so that is good. We are hoping that it will be gone soon.

She's getting baths now and doing well in her new bed.  She got her PICC line out yesterday so now she is only on breastmilk+24 calorie fortifier mixed in.  I am still unsure how her little tummy holds all of that food every 3 hours, but she seems to be digesting it all.

Anyway, as of today she is plugging along!

I took Mason to Chuck-E-Cheese's this morning and we had a great time.  We are starting to get in a little bit of a routine, but we have a long way to go.  It's still exhausting, but we are hanging in there!

We want to thank everyone that is checking in on us, signing up to fix us meals, giving so generously, and most of all praying for sweet Lucy and us.  We truly appreciate everything!!!!

Prayer Requests:
- That Lucy continues to eat and grow well...and tolerate all of her feedings.
- Brain bleed to continue to get smaller and disappear
- That the rest of the follow-up blood tests come back fine on the PKU numbers.  Thanking God for the improved results today!!
- For us to get in a good routine that is not so tiring.

Chuck-E-Cheese adventures (more pictures of Lucy soon)

Two Weeks Old

Lucy turned 2 weeks old today.  In some ways it seems like she should be older than that and other ways I can't believe it has gone by so quickly.
She moved to a new bed today.  She was in one called the Giraffe bed...the NICU nurses call it the "million dollar bed".  It has easy access if they needed to get in due to an emergency.  Since she is over her birth weight now and doing well on feeds and breathing, etc they were able to move her.
As far as her daily progress she is doing great.  Nothing really to report.  She did have another brain scan today to check on the brain bleed.  we have not heard the results on that yet.  Her eye infection ended up being nothing too major.  The nurses suited up in gowns and gloves yesterday just in case it was contagious, but were back to normal today.  Eye drops should do the trick.  They looked fine today actually.
Mostly we are just waiting on the 2nd newborn screen that they sent off yesterday for the PKU re-test.  It will probably take until next Monday or Tuesday to get the results.  To say this is the longest week of my life is an understatement.  I am trying to remain calm, but it's tough.  I kind of just feel sick to my stomach all the time right now.
Lucy looks great and is a growing girl though.  I have gotten to hold her for 3 days straight now.  Pretty much my favorite time of day.  That, and picking up Mason when I get home from seeing her.  :)
Last time I checked she was 2lb6.5oz.  I forgot to check today, but they will weigh her at 9:00 and we will call in to check after that.

Specific prayer requests:
- The big one...That the PKU newborn screen comes back negative this time.
-The brain scan to show smaller or no bleed
-She will continue to tolerate her feeds now that they are going up on calories.

Some photos:

Lucy's new bed

 Cuddle time with Mommy

 Almost caught her sleep smiles

 Sleepy girl

 Prayer quilt from my church...so sweet and means so much to us.  Thanks to Trisha Taylor for bringing it to me yesterday!!

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Say a Prayer for Lucy

 Lucy's newborn screening came back from the state of Texas and blood work shows that she may have PKU.  It is the first time I have ever heard of it, but basically her body may not have the enzyme required to process a certain amino acid in proteins.  If not treated it can be bad news.  Treatment basically consists of a VERY strict low or no protein diet for the rest of her life.  There is more to it,  but I need to read/talk to doctor more.
Right now I am just confused and anxious to get more blood work   It is a genetic disorder passed down from both parents.  It is kind of odd to me because no one on either side of the family has this, so I am unsure of the process on how it is passed on through our genes.  Especially since Mason does not have this issue.  I have a lot to learn though obviously.
There is always the chance it is false too.  It is very common for preemies to have false positives on this test just due to age, but apparently Lucy's numbers were much higher than usual if that is the case.  Sometimes antibiotics or being on breast milk less than 24-48 hours could cause elevated numbers too.  She was either on or just came off antibiotics and was on milk less than 48 hours when they did the screen.  I am really hoping that a combination of all that is the reason...I know I need to not get my hopes up though.  More blood work has to be done in the next couple of days to know for sure.
Please just say a prayer for my baby girl.  I know that God can work miracles.

I always love holding my girl

 Big ole stretch!

No News is Good News

The past couple of days have been quiet again.  There is really not a lot to report other than Lucy has been tolerating her food really well and resting.  I don't see how that much milk fits in her tummy every 3 hours, but when they check her out it is all gone.  Hopefully because of this she can get her PICC line out pretty soon.  She has not had many bradycardia episodes and when she does they seem to find a reason (her air mask is not on tight, feeding tube slipping out of tummy, breathing nasal prongs not in at all, etc.  Every now and then she will have a "real" one but she pulls herself out of it without stimulation very quickly every time, which is a good thing.

She is now above her birth weight.  She had dropped to 1lb 13.5oz after birth and now weighs 2lb 4oz.

We've been trying to get into a routine at home.  Mostly I just sit around and rest still, but hopefully we will figure out a good system soon.  It's been nice spending time with Mason for sure, but I also feel torn because I want to see Lucy as much as possible. The nurses assure me that she is loved and cared for and for me to not worry about her.  I am trying!  ;)

Prayer Requests:
-Heart echo to show no hole today
-Brain scan/brain bleed to be clear or at least getting smaller
-Continued toleration of her food and lots of rest
-For No bradycardia episodes
-Her eye is matting up, so they started eye drops.  Hoping it is not an infection...probably just a blocked tear duct, but still pray will get better.
-For our new routine
-For the amazing doctors and nurses that take care for our little girl

And now, for some pictures.  Hopefully it's not picture overload!  :)

Mason writing his and Lucy's name on the patio                             Mason's new playhouse

                                                                Lucy on Daddy's chest wide awake

 Daddy's turn to kangaroo

 Lucy's pouty mad face.  She is not a huge fan of being disturbed every 3 hours.  In this photo notice the orange line is out of her mouth.  She is now becoming a pro at pulling all of her lines out.  Silly girl.  

 Daddy holding her so they could weigh her...above her birth weight now!  yay.

 Holding Mommy's finger

 My boys...dinner at Babes thanks to Brady's parents

 My sweet big boy, Mason

 Lucy's hand and foot print.  Hard to tell, but they are TINY.

Day 8 and 9

Day 8- Super uneventful!  This is a great thing.  No scans or tests or anything to mess with Lucy.  She was able to rest peacefully all day long.  Switching back to the bubble cpap seems to be the key for the moment. She went from having 6-8 bradycardias an hour at times to 6-8 in a 24 hour period yesterday (all of them self-recovered quickly which is also good).  Because she did so great I was able to hold her for over an hour yesterday.  Neither of us wanted it to end, but I had a big 4 year old brother to entertain.  :)  I have been missing him so much.  In the last few weeks we have hardly seen each other with everything going on.  He stayed in the hotel with Brady and I, and of course to him, that was the best thing EVER!

-EKG came back fine today

It was one of those one step forward kind of days.  Pray for many more of those!  Knowing how NICU life is, I know it won't be like this everyday for the duration, but it really feels good to have those days when you feel like everything is going to be just fine!

Lucy's first bath...she was not a huge fan!  ha.

Being modest...holding her towel.  :)

 Holding her while they changed her bed.  She's tiny but soooo sweet!  

 Kangaroo cuddle time with Mommy

Mason playing in the hotel

Asleep with all of his friends piled on him!  :)

Day 9-Another uneventful day of rest and growing.  As of 6:00PM Lucy had only had 2 bradycardia "episodes" in a 24 hour period.  That's kind of a big deal.  Who knows what tomorrow brings, but little Lucy has been doing great the last couple of days.  Really there has been nothing to report when I call in to check on her. She is back up to her birth weight as of last night...2lbs. 3oz.  Hopefully tonight we will get over that hurdle and will really start to watch her grow.  I already think that she looks bigger than the day she was born.  It may sound silly since she is so tiny, but her face looks fuller to me and her arms and legs look a little less scrawny.  :)
Today we spent the day with Mason and took him to his favorite, Chick-fil-a for lunch.  Then we went to get him a desperately needed haircut and to the Safari park to play.  We came home today and left Lucy in Lewsiville...that has been pretty tough on me.  But it has been nice to have a meal at our dinner table, a nap in my own bed, hearing Mason laugh and play with his cousins outside and sitting here on my own couch wrapped in a blanket while I type.  Time to find a new routine and a new "normal" for the next couple of months.  It makes me tired to think about it, but "I can do all things through Christ who gives me strength!"

 Haircut time for big brother

 Safari park fun

Prayer Requests:
-More uneventful days...days of growing and sleeping for Lucy
-Mondays heart echo to be clear of PDA---hole in heart.  We already know it is tiny and no murmur is heard, but we want it GONE.
- Wednesday's brain scan...bleed to be gone.  We know it is a grade 1 bleed (lowest risk), but again we want it GONE.
-For no infections
-That she keeps tolerating her feeds so well.  She has done awesome so far.
-For all the other little punkins and parents in NICU...it's a tough road for everyone involved.