September 30, 2012

NICU weekend update

It has been a weekend of progress and mixed emotions.  On Friday, Jason spent the day with Olivia and I at the hospital and it was great having him with us all day!  It was also productive because we are both learning how to feed Olivia.  It is quite the ordeal at times....especially if Olivia is upset or too sleepy.  But we have both gotten some good practice with her this weekend so hopefully it will be a successful transition for all of us once Olivia is home.

Because Olivia was doing so well on Friday, the doctor actually thought we would be able to bring her home this week.  However, throughout the weekend, Olivia has only consistently taken about 1/2 of her feedings by bottle and the other 1/2 had to be given through her feeding tube.  Since she isn't taking all of every by bottle, the doctor today said that it would be at least next Monday because he wants to observe her this entire week and then consult the speech therapist and other doctor about going home.  At this point, it is also quite likely that we will be brining Olivia home with some sort of feeding tube.  Of course, we know that could all change within a week and that is what we are praying!  We know that things can change in a matter of hours in the NICU so we are praying hard that Olivia's feedings will just "click" and she'll begin taking each feeding completely by bottle.

This is why she can't seem to finish a bottle right now....
Precious baby just can't stay awake long enough!  Sometimes Olivia will even sleep "through" a feeding so the nurse doesn't have the opportunity to try the bottle and the feeding is given by tube.  We're praying she will wake up for all her feedings, stay awake through her feedings and take all of her feedings by bottle this week.

September 27, 2012

NICU update...swallow study

Olivia had a great day and we have HUGE praises!  The swallow study went perfectly and Olivia cooperated enough for the speech therapist and doctor to get a good idea of what is and what isn't going on when she is eating.  The swallow study showed NO signs of aspiration and NO signs of severe reflux! PRAISE THE LORD! Because there were no signs of serious issues, Olivia is now taking milk without any thickener to see how she tolerates it through the weekend.  Her swallowing reflex is still a little slower than normal but the speech therapist believes this will get better as she drinks more from the bottle and "exercises" those muscles more often.  She has done great so far (drinking 2 entire bottles this afternoon!) and we couldn't be more excited about this progress!  I finally feel like we are moving forward to bringing her home soon!

Olivia had to be transported once again to another hospital for the swallow study.  But this time, we got to join her.  Jason and I actually sat in on the swallow study and it was one of the neatest things we have seen.  We got to watch how her insides respond to liquid and exactly what her body does during feedings.  And because we got to watch all of that I feel like I have a better understanding of how we can help her be more successful at eating.

She sleeps SO soundly in the transport box....even in the bright lights of the hospital.
And the nurse removed her feeding tube during the swallow study so it wouldn't disrupt what the doctor was trying to see and they left it out for awhile until she woke up again.  I took advantage of it and got some sweet pictures of her precious little cheeks and face without any tubes. :)
We are praising the Lord tonight for this big answer to prayer!  Though feedings are still not going to be super easier, we all have a better understanding of how to make this a successful and positive experience for Olivia and hopefully less stressful on us while feeding her.  We are continuing to pray that each feeding will get easier for her and that she will take every feeding by bottle in the coming days.
Thank you for taking the time to say a prayer for Olivia today.  God is definitely answering prayers! :)

September 26, 2012

NICU day 35

Today marks 5 weeks of our NICU journey.  Olivia has accomplished so much in the past five weeks.  She continues to grow and is thriving...up to 7lbs 4oz today!  Olivia has consistently taken about 1/2 of her feedings by bottle the last two days so we are hopeful that she is finally getting the hang of it.

Little Sister also had an eye exam this week.  Eye problems, including blindness, is very common in babies who have been on the vent or lost oxygen during birth.  Fortunately, the eye doctor did not see any issues!  We will have a follow up in the coming months but for now we are praising God for this blessing!

Tomorrow she will have a swallow study done with the speech therapist and doctor.  We are hoping to have some clear answers as to how to proceed with her feedings and reflux medication so that she can be more successful with her feedings by bottle.  We're ready to move forward with her feedings and get a date to bring her home!  I'm also ready for some pictures of this sweet baby's face without any tubes! :)

September 25, 2012

happy 3 years!

I can't believe Jason and I are celebrating our 3rd anniversary today!  SO much has happened in the past year (especially the past month) and I couldn't be more thankful for Jason.  He has been the most supportive and loving man through lots of ups and downs and lots of laughs and tears.  It has definitely been a crazy three years but I honestly can't imagine going through it all with anyone else.  God knew EXACTLY what I needed when Jason and I met four years ago and I'm so thankful He knows me better than I know myself.  I'm so thankful for the loving husband and awesome daddy Jason is!

Happy Anniversary, Love! I can't wait to see what God has in store for the next 3, 10, 30, 50 years!

September 24, 2012

NICU day 33

Olivia is working hard to get the bottle thing down!  She took several bottles this weekend but didn't want much to do with it today.  And when she did take a bottle, she would end up throwing up.  The doctor doesn't seem to be too concerned with this yet but Olivia will definitely have a swallow study done this week so the doctor and speech therapist can evaluate her reflux.  She is currently taking Prevacid but that doesn't seem to be doing much to correct the issue.  Hopefully the swallow study will show the doctor exactly what needs to be done so she can keep her milk down and we can start thinking about bringing her home.

One thing I have learned through this whole bottle-drinking ordeal is that I will NEVER again take for granted feeding a baby a bottle.  It seems so simple...suck, swallow, breathe....but that routine doesn't come easily for Olivia and it has changed the way I think about it all.  Olivia has to be held a certain way during feedings, burped often and then held upright for several minutes after eating to see if she will throw up.  It is a little overwhelming to think about but I know it will get easier for all of us in the coming days.

This is one of Olivia's sweet nurses patiently working with her to drink from the bottle.

This whole bottle thing really wears this girl out!  She sleeps so hard after working at the bottle.
We are praying for several things this week: 1)the reflux will subside, 2)Olivia will continue to get comfortable with bottle feeding, 3)the swallow study will give the doctor some insight into what goes on while Olivia is eating.  Thank you for following us and praying for us on this journey!

September 23, 2012

woo pig sooie!

This weekend was not only Olivia's one month birthday but it was also Hannah's first Razorback football game! We have never braved taking her to a game knowing she wouldn't last long but with everything going on, we decided Hannah needed something special to do with Mommy and Daddy.

Hannah was SO excited about the game!  She talked about it all. day. long.  I loved her was way more fun watching her watch the game than actually watching the game.

Loved the sno cone...

Loved the band at halftime...

Loved calling the Hogs...

Loved being at a football game with her Daddy...

It was a fun family night out despite the horrible ending to the game.  We made the most of it, though, and really enjoyed some time with Hannah!

September 22, 2012

happy one month, Olivia!

I absolutely cannot believe Olivia is one month old today!  And today was spent much different than I thought but I know she is where she needs to be as hard as it is not to have her home yet.  When Olivia was first born, we were told she would be in the NICU for about 3 weeks but now we are at one month and my momma heart is sad today.  I am seriously aching for this little girl to come home.  But I also know it is SO important for her to work on her feeding from a bottle at the hospital under close supervision from doctors, nurses and therapists before we tackle that at home. 

Please keep praying that she will be successful with her bottle feedings.  Her day today wasn't as great as past few days have been.  It really wears her out trying so she is sleeping through a few feedings a day and the nurse just tube feeds her when she is so sleepy.  It is a little discouraging to have a few good days in a row with great progress and then a rough day with not much progress.

Here's our sweet, sleepy girl today at 1 month, 6 lbs 12oz:

September 21, 2012

NICU day 29

Olivia has had a great 24 hours trying the bottle.  She has now taken two complete feedings (almost 2 ounces) by bottle and we are SO excited!!!  This is huge because earlier this week she was barely taking 1/4-1/2 of a feeding.  We are very encouraged by her progress and are praying it keeps up this weekend!

The only "hurdle" we have right now is trying to figure out which formula and thickener combination is best for her.  She has been having some reflux issues since drinking more and more formula so the speech therapist is "experimenting" with a few different types of formula and hopefully we can find the right one for Olivia that will reduce her reflux.  (She has to be on formula right now because she needs a thick liquid and breast milk is too thin and doesn't mix with the type of thickener she needs at this point.)

Little Sister has been more and more awake this week, mainly due to no more phenobarbital (the strongest seizure medicine), and it is so much fun!  I love spending my days with her and figuring out her little personality.

I promise this is not posed!  I'm pretty sure the girl is already tired of pictures ;)
We love this little girl so much and are counting down the days until we can bring her home!

September 19, 2012

NICU....4 weeks

It is so hard to believe that we started this journey four weeks ago. It's funny too how it seems time has flown by but there are some days in the past month that I felt lasted forever. We have seen our little munchkin go from this at Day 1:

to this at Day 28:

She has come SO far in four weeks but it hasn't always been a smooth ride.  This is definitely a roller coaster ride and we are hoping we are nearing the end.  We did get word earlier this week that we are probably going to be in the NICU for another 2-3 weeks, or until she gets her feeding from a bottle down.  We are SO ready for Olivia to be home with us and complete our family!

September 17, 2012

NICU weekend update

Olivia has had an up and down weekend but fortunately today ended with great progress!  The focus for Olivia right now is for her to take milk from a bottle.  Her sucking is phenomenal...she sucks on her paci like a champ and would suck on it all. day. long.  But when it comes to the bottle and milk comes out, she kinda freaks out a little bit.  And if she gets choked at all, she's done and doesn't want to try really at all.  Fortunately, we have a phenomenal speech therapist who came in for two sessions this weekend (on her days off) to work with Olivia.  She didn't do awesome Saturday or Sunday but today was a different story....

Her therapy sessions absolutely wear her out. She took a good little nap cuddled with Daddy on Sunday afternoon.

Today I spent most of the day with Olivia while Hannah was at preschool.  (I must add that Hannah is doing MUCH better and went to school without tears this morning!  For those praying for Hannah too, THANK YOU!)  Olivia was awake (and serious) most of the morning.  I could just stare at this face all day long!  It may be difficult to be productive once she comes home! :)
Today Olivia took almost an entire feeding by bottle!  This is HUGE because she has only been taking about one-fifth of her feedings since beginning the bottle last week.  We praying hard that this progress continues this week so the doctors will start thinking about discharging this little one and we can bring her home! Please join us in praying this too.  My momma heart is beyond anxious to have sweet baby home with the rest of us.

I posted this on Facebook and Twitter on Saturday but couldn't resist not posting it here. LOVE this little piggie!

September 14, 2012

NICU day 23

Olivia has been doing better and better with her sucking this week and we couldn't be more proud!  The speech therapist works with Olivia every day for one of her feedings doing some work with a pacifier and some work with a bottle.  The last couple of days the speech therapist has been trying different consistencies of milk and so far the best combination for Olivia seems to be a little bit of breast milk, a little bit of formula and some drink thickener.  It is possible that Olivia is aspirating so she can't take straight breast milk since it is too thin and she chokes a little bit each time she swallows.  She will most likely have a swallow test done sometime next week to see exactly what it is going on when she swallows.

She does, however, take the pacifier like a champ!  She loves it!

We have been encouraged by Olivia's progress with her sucking and drinking from a bottle because it shows that she has some sort of cognitive function!  This is huge because since her brain injury appears to be significant, we have no idea what parts of her brain is affected.  She definitely notices a difference between sucking on her pacifier and sucking on a bottle/having to swallow something, we know there are connections from her brain to other parts of her body telling it what to do.  Praise the Lord for signs of cognitive function!

We are learning that each thing Olivia does is a victory.  I am learning not to take the little things that a term baby would automatically do for granted.  We are so thankful for Olivia is making progress and we know she is going to amaze all the doctors with what she will do!

September 13, 2012

NICU update...MRI results

I apologize for not blogging this when we found out the MRI results on Tuesday but the results were not what we were hoping and it has taken me a few days of processing to finally put into words what is going on.  Obviously some of the medical jargon is muddled in my brain but here is what we heard from the neurologist and our plan of action for our sweet Olivia....

Olivia has a significant brain injury to the outer part of her brain.  From the way the neurologist described it, the injury covers a large amount of her brain.  Because the injury is significant, the doctors have no idea how this will affect her growing up.  What they do know is that she will have developmental issues but to what extent and exactly what those issues are we will not know for months to years.  This is probably the most frustrating part for Jason and I because we just want to know what to expect, like if her speech will be affected or her physical abilities, but unfortunately we don't have any clear answers so we have to move forward knowing anything (or everything or nothing) could be affected by this brain injury.

HOWEVER, we have a God who is bigger than all of this.  As Jason keeps reminding me, God doesn't make mistakes, His plan is perfect and Olivia's circumstances are not a surprise to Him.  SO we are trusting God for BIG things!  We are praying for complete healing.  Olivia has been a miracle since birth....statistics show that when a mother has a complete placental abruption, most babies don't survive but God spared her life so we know that He isn't done with her yet!

For now all we really know is that Olivia will have speech therapy, occupational therapy and physical therapy multiple times a week, just as she does now at the hospital, once we are home.  Jason and I will learn her therapy routines and do them with her as much as we can.  We will love her and do everything in our power to get her the best care possible.  We KNOW that she is going to do great things and absolutely amaze the doctors who have been studying her brain for the past three weeks.

Olivia's story is just beginning and though we do have moments of fear looking into the future, we are doing our best to take one day at a time, focus on getting Olivia home as soon as possible (which we did find out will be sometime around my actual due date of September 29) and daily humbly laying and crying at the feet of Jesus begging for His grace and mercy over her little brain.

September 10, 2012

NICU day 19

Another big day in the NICU for sweet Olivia!  The speech therapist has been working with her each feeding on her sucking and she did awesome today!  Because she did so well, we even got to try a bottle!
 She still has a long way to go before being bottle-fed but at least we know we are heading in the right direction.  Olivia's biggest struggle with the bottle today was getting her breathing and swallowing down.  She would "hold" the milk in her mouth for awhile then swallow really fast and hard about 3-4 times which made her swallow lots of air.  Hopefully each day will get better!

Since I spent most of the day with Olivia but had to leave to pick up Hannah from preschool, Jason went up after work to spend some time with her.  He was there during her occupational therapy session and worked with her on her pacifier.  I'm so thankful he is able to spend some quality time with her each day.

And because this little girl hasn't had a blog appearance in a few days....I found this girl playing in Olivia's room and climbing into the crib this afternoon.  I think Hannah is a bit excited to have her little sister home from the hospital! :)

Tomorrow is the big day for Jason and I as we will find out exactly what Olivia's prognosis is from her MRI scan done last week.  We have a meeting with the neurologist and the neonatal doctors tomorrow afternoon.  We would greatly appreciate your prayers for this meeting.  We don't know what to expect and I'm sure we will be overwhelmed with information but we are trusting that God has the perfect plan for our sweet baby and her life and healing is completely in His hands.

September 9, 2012

NICU weekend update

This was another big weekend for Olivia!  Thursday Olivia was moved to her own room, Friday she had her MRI and Saturday she was moved to an open crib....she has done great with all these changes and we couldn't be more thankful!

We were happily surprised to learn early Thursday morning that Olivia would be moved to her own room.  This is huge because she is now out of the critical stages and we are a little bit closer to bringing her home, though we still have no idea when that will actually be.  It also means we can spend more time with her at the hospital, which is SO great for our momma and daddy hearts.

On Friday, Olivia had her long-awaited MRI.  Olivia had to be transported to Springdale for her MRI so one of her nurses came in on her day off to go with Olivia on the ambulance.  It is quite an ordeal to transport little ones but we were fully confident in the transport team and the nurse.

Here's Olivia's ride to Springdale:

I know this picture is really dark but I wanted to  capture her cute little earmuffs (the yellow thing on the side of her head) used to block out the noises of the MRI.  Supposedly it is really loud but fortunately the nurse said she slept through the entire thing.
I spent all Friday afternoon just loving on this sweet girl.  It was so great being able to hang out at the hospital, hold her during her feedings and work on her taking a pacifier. (Still a huge prayer is one of the last goals we have before we can bring her home!)

Saturday, her PICC line was removed so she is no longer hooked up to anything except her feeding tube and her pulse monitor!  Because her PICC line was removed and her body temperature has been consistent, she was moved to an open crib!
And because she is in an open crib, I finally get to dress her!  Although only onesies and gowns are allowed, it is refreshing to get to dress my baby 17 days after birth.  Every little thing is a victory and I am not taking these things for granted.
And because Olivia has a private room, a few family members are able to visit and actually hold her now.  My mom and sister both got to hold her this weekend and they were both pretty excited. :)

A very eventful weekend for our sweet little angel!  Now we, as parents, have an eventful week as we will be meeting with the neurologist and doctors about the MRI results.  Please be praying that we will have the strength to handle the results as well as the wisdom to know what we need to do for Olivia in the coming days.  This is all unknown territory to us but we know God knew all of this since the beginning of time so we trust in His plan for our lives, especially sweet Olivia's life.

September 6, 2012

NICU day 15

Today was a big day for Olivia!  She finally has her own room!  Though we are still in the NICU, she was moved from "the core", where the most critical babies are, to a private room where we can spend more time with her. 

I got to spend some extra time with Olivia this afternoon because she was in her own room.  It was so much fun!  She was awake most of the time I was with her and it did my momma heart good getting some alone time to love on my baby.  I'm looking forward to more special moments like this while in the NICU.

I LOVE these baby eyes!

We finally heard from the neurologist today that Olivia's EEG from Tuesday looked normal and there were no signs of seizure activity or abnormal brain waves!  Praise the Lord!

Olivia also had her first speech therapy session today.  Her sucking reflex isn't very good right now so that is a prayer request as well as something we will really be working on in the next few days with her pacifier.  She must be bottle/breast fed before coming home so the sooner she gets her sucking reflex down, the sooner we will be one step closer to getting rid of the feeding tube and being discharged.

Tomorrow is another big day for Olivia as she will finally have her MRI.  This is the day we have all waited for and are most anxious about.  Please join us praying that her MRI would come back perfect with no signs of brain injury or trauma.  We know that God has big plans for Olivia and He alone can completely heal our sweet baby.  Thank you again to each of you who are following our journey and lifting our family up in prayer.

September 5, 2012

NICU day 14

It is so hard to believe that we have reached 2 weeks since Olivia entered this world.  She has come a LONG way in 14 days and we hope the next 14 days will have just as much improvement.

Today was a decently quiet day for Olivia.  The big thing for today, however, was that she finally had her nasal canula removed, which means she is completely breathing on her own!  It was such a great surprise to see her without it today!  And she is becoming more alert because the neurologist who reviewed her EEG has recommended that she be weaned off the strongest anti-seizure medicine, phenobarbital, that she has been on since birth.  It was fun to see her eyes a few times today.

She wasn't too sure about everything going on and wouldn't keep her eyes open for very long but it was still refreshing to see her more alert and awake.

I've been getting some good cuddle time in with her each day during her feedings. It is by far my favorite time of day!
The occupational therapist began therapy today with Olivia and we actually got to see some of things she will do each time.  It's basically just infant massage, working on Olivia's joints and "waking up" her nervous system.  I will be taking a few infant massage classes at the hospital before we bring her home so we can continue this therapy at home.
We still haven't met with the neurologist or the doctor this week to discuss any of the tests that have been happening.  I kind of feel like we are walking in the dark until the MRI on Friday so until then, I am soaking up all my time with this precious baby girl and trusting the Lord for complete healing.

NICU day 13

Olivia is doing better and getting stronger each day.  So far this week she has had her third EEG and has been evaluated by the occupational therapist and speech therapist.  We haven't officially met with the doctor or neurologist to get the EEG results but the tech, who does all the EEGs in the NICU, did say that Olivia's EEG looked much better this time than it did last time.  We are clinging to that statement and hoping the doctor thinks the same! 

Poor baby with the EEG marks on her forehead.  I will be SO glad when she is unhooked from everything!
I am so thankful Jason is self-employed.  It has been a huge blessing because he can go to the hospital to visit Olivia as often as possible.  He spent his lunch hour holding her while she fed.

I got to change Olivia's diaper for the first time yesterday!  I have never been more excited to change a diaper! Ha!
But this little girl wasn't as excited about the diaper change and temperature taking as her momma!
Olivia has already been evaluated by the occupational therapist and speech therapist.  The only "results" we have from those evaluations are that she doesn't suck very well and it takes her quite a while to latch on to the pacifier.  We are praying that improves in the coming days because the speech therapist is the one who will give the green light on giving Olivia bottles rather than the feeding tube.  I'm hoping this happens sooner than later...I'm SO ready to give this little girl a bottle!

September 3, 2012

NICU weekend update

Well this weekend was pretty "normal" for Olivia, as normal as can be in the NICU.  No major changes, of which we are very grateful!

I've gotten to hold her several more times while she is feeding and even started some "kangaroo care" or skin-to-skin contact.

The nurses are also starting to work with her on the paci.  She's not too crazy about it but it will help with her sucking reflex and feeding from a bottle in the coming weeks so we are praying she picks it up quickly.

I found this precious hat at a local store and couldn't resist getting it for Olivia.  It is HUGE on her and she can only have it on when we are holding her but it was too cute to pass up!

This will be a big week for Olivia.  She will be evaluated by the occupational therapist, the physical therapist and the speech therapist so they can begin therapy with her in the next week or two.  She will also have another EEG to check her brain activity (pray for no abnormal brain waves!) and she will have an MRI on Thursday or Friday (pray for no brain injury!).  Please join us in praying for complete healing for Olivia this week.  This is the week I have dreaded and been most anxious about since learning about the potential of a mild-moderate brain injury early last week.  We appreciate each and every one of you for lifting up Olivia to the Great Physician.  He has already worked so many miracles in this little girl's life and we know there are more to come!  Thanks for joining us on this journey!

September 1, 2012

NICU day 10--oh happy day!

THANK YOU to everyone who is praying for our family during this time and keeping up with our journey through this blog!  We are truly humbled by the number of people praying for us.  We have felt the prayers and have witnessed miracle after miracle with our sweet baby.  I hope to do a post soon listing all the great things God has done through this experience but until then, a little recap on day 10....

Today has been the BEST day because we finally got to hold our sweet girl!  It was a complete surprise and we couldn't have been more excited!  This is a day I have prayed for since Olivia was born.  She is still hooked to several IVs and machines so holding her is quite an ordeal but I am so thankful her nurse made it happen today!  We won't get to hold her every time we go visit but this is a moment I will cherish forever.

Can't wait for a family of four picture :)

I CANNOT get enough of this chubby face! 

Seriously, holding Olivia today did my heart so much good!  We love this little angel so much and are praying for the good days to continue.