Home Away From Home

These are some pictures from when Malia
was sick in the hospital. Actually, her fever
had broken and she was all smiles pretty
much her whole stay.

Her IV coming out of her poor head.

Her big ol'bed. A little different from her NICU bucket.

They needed to place a new IV and attempted 6 times.

Lucky #6 went in her ankle. Poor baby had to endure

3 pokes to the head and 2 in the arm before they were

able to successfully put it in her ankle.

Spinal Meningitis??? What!!!!

After having a fever for a whole week and it not going away with strong doses of antibiotics, the pediatrician thought it would be best if we got a spinal tap done to rule out spinal meningitis. I took Malia to the ER Friday morning and 5hrs later the doctor was telling me that Malia tested positive for spinal meningitis. Here is where it gets complicated. There are 2 types of Meningitis, viral and bacterial. Viral you just let it run it's course, it can make you pretty sick with flu like symptoms but it usually goes away after 5 days. Bacterial can be very dangerous and needs to be taken seriously with a long regimen of antibiotics. Malia's test came back indicating that she most likely had viral spinal meningitis but since she had been on strong doses of antibiotics all week for her ear infection they were not sure if the antibiotics were in deed actually treating the bacterial meningitis making it look like viral. (ughh, i told you it was complicated) So, at this point they had not choice but to admit Malia to the hospital and treat her as if she had bacterial spinal meningitis until her blood work indicated otherwise. We were told that it would take at least 48hrs if not longer for her blood work to come back indicating any viral type infection and she'd need to stay in the hospital until the results came back. By Tuesday, we still didn't have a definite answer to whether it was viral or bacterial so they assumed it was bacterial and treated it as such. Malia was thankfully doing much better and hadn't had a fever since we admitted her on that Friday. She was able to be discharged Tuesday with a home health nurse coming in to give her antibiotics over the next 5 days.

When we think about "what could have happened" we are extremely thankful that Malia pulled through this very serious illness in the fighter type manner that she's pulled through everything so far. She is one tough cookie! A big Thank You to Harley's step-mom who came out for 6 days to play nanny/mom to Kayla and Lydia. She was a huge help and it was a huge relief to have her here so I could be at the hospital with Malia. I, of course, can not fully comprehend God's plan for Malia's little life but I can only think it will be something truly and utterly amazing! To be so small and to have already endured so much but yet have so much still to overcome, she's absolutely amazing. Thanks once again for all your prayers. I truely believe this girl "fights" through every situation because of the many people praying for her.

Go away Fever!!!

After a trip to the pediatrician's office today and then a trip to the hospital to get a blood work-up, we were able to find out that Malia's white blood cell count was really high (she was at 27 normal is 10), causing her to still have a fever and some vomiting. These levels indicate that her white blood cells are fighting some sort of infection and she needs to be on a strong dose of antibiotics for the next 2 days. Please pray that this is all it is and that the antibiotics kick in sooner than later. It's so sad to see her so sick. We haven't seen her smile in 3 days. They also took a chest x-ray to rule out pneumonia and did a urine analysis to rule out an UTI. Those test came back negative. It's been a very long 3 days!

Double Ear infection

The poor baby has a double ear infection and if you could see her right now, you'd say "poor" baby too. She has been battling a high fever since Friday. Last night is when the high fever turned super high (106) and she began to vomit everything that went in her stomach. I took her into the pediatrician today completely sleep deprived and worried something was really wrong. I had no idea that an ear infection could cause vomiting and such high fevers. She currently still has a fever and is laying on my chest completely drained. She is still vomiting the little amounts of pedialyte that I am able to give her through her g-tube but the pediatrician gave her a super boost antibiotic that comes in the form of a shot and is administered into her leg so hopefully with that in her system and a 9 day regimin of Amoxicillin, she'll be better in no time. Just praying her fever subsides and that she stops vomiting so she can stay hydrated. I'll keep you all posted on her progress.

Cereal time!

All ready to eat cereal, yum,yum!

Getting a little messy

A little more messy

And.... she's officially a mess!

I'm really not sure how much she actually swallows since it appears that she's wearing most of it but I'm pretty sure it's normal. Practice makes perfect and since liquids aren't really going to be her friend, she needs to learn to eat food.

I'm 6 months already!

Sorry it has taken me so long to update Malia's blog. As time goes by I am reminded of how much Malia is a part of all your lives as she is ours. She has been lifted up in prayer and brought before the Lord time and time again and we've all grown to love her! She holds a special place in our hearts as we are constantly reminded of what God can do and continues to do in her life.

.We had a busy week last week with 3 appts. to the pediatrician, the hospital for a swallow study and a developmental assessment done by pediatric rehab. The pediatrician was thrilled with her growth. At 6 months she now weights 12lbs. 5oz and is 25 1/2 inches putting her in the 5th% for weight and 25% for height. At her corrected age of 4 months she is in the 25% for weight and 75% for height. The Dr. was so pleased that she doesn't need to see Malia back for 3 months. This was a huge relief since we were previously making monthly appts. and bi-monthly weight checks. Yay for one less thing!

.The swallow study didn't go as well. We were so hopeful that Malia's vocal chords were healing allowing her to swallow and tolerate thinner liquids. That wasn't the case and we basically took a step in the other direction. The radiologist was able to see that she was silently aspirating on "nectar" thick consistancy and had to change her to "honey" thick consistancy with a slow flow nipple making it pretty much impossible for Malia to drink her full feeding. So......... back to the feeding tube, nooooooooooooooo. I was so bummed, we were so hopeful but we are also so thankful that we found out. Aspirating can lead to pneumonia, chronic coughing or long term lung damage so we are very thankful we caught it in time. It's definitely more work going back to the feeding tube but this time I am able to feed her 100mls from the bottle and 100mls from the tube at the SAME time. Since her reflux is so much better she can tolerate milk going in her mouth and her tummy at the same time. Feedings take about 15min. once I get everything set up and ready to go. I definitely had to adjust my mindset but once I did God was so good at giving me the strength, endurance and positive attitude that I needed. Amazing how He works!

We ended the week on a more positive note. Malia attended the developmental clinic where a pediatric doctor and occupational therapist evaluated her on her developmental progress, strengths and areas of concern. They were able to give me recommendations and a plan on how to improve some of her weaknesses. Overall she is developing very well. Her strengths are that she has a super invested family, she is very social and tolerated the eval nicely and she is doing well with her feedings. Areas of concern were that she showed decreased strength throughout her trunk and was only able to hold her head at a 45 degree angle instead of 90 degree angle. Their recommendation was to encourage more "tummy time" to increase overall strength which she absolutely hates so I'm not very good at encouraging it. We'll get there though. They will re-evaluate her in 4 months to hopefully see improvement and hopefully "no" areas of concern.

Us girls are all by ourselves these next 2 weeks as Harley is in Africa. Please pray for his safety as he is traveling and pray that I can be a good, patient and loving Mom in his absence. Thanks again for continuing to pray so fervently for Malia. She truly is such a special and sweet, sweet baby.

All bottles!

Malia has made huge gains this past week in the feeding department. She has not needed the pump for a whole week. She is taking all her feedings by bottle!!! I waited a whole week to post this in fear that it wouldn't last but she is doing great. She was doing 6 feedings a day (100ml's at a time) but dropped one feeding last week and is drinking 120mls 5x a day of thickened milk. She also is rolling over from her back to her tummy. A huge developemental milestone proving that she is developing right on target. Praise God! She is enjoying playing with anything she can get her hands on as well as putting everything in her mouth.

Malia update - I'm 5 months old now!

I'm 5 months

I've been doing very well. I'm taking it easy on my mommy and daddy and I can't even remember the last time I puked all over them. I'm taking my whole bottle (100mls) 4x's a day and then Mom uses my feeding tube for the early morning and late night feeding. That way I get to sleep while I eat. It's a pretty sweet deal :) I've been sleeping through the night for a long time now. My mommy even has to wake me most mornings at 7:00am to get me started on my feeding schedule.

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I went to the cardiologist yesterday and everything is still looking good. They are not sure if I have WPW anymore but I need to stay on my cardiac meds until I'm one years old just to make sure. Then I can do a trial off my medication to see if my heart goes into SVT determining if I have WPW or not.

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I also went to the ENT (ear,nose, throat) doctor yesterday as well. She put a camera down my nose and into my throat to see if my throat is healing on it's own (I didn't like that very much). The doctor was very pleased with my progress and said that she can see healing taking place and wants to do a repeat check in 4 months. She thinks that as my throat heals, my voice will become more audible as well. It was hard for her to say if my throat will completely heal on it's own but she's seen infants do amazing things and she is hoping that it will.

Tummy Time

Not her favorite part of the day but o' so important.

Stay up to date

Keep up with the family at...........

www.lookatmoore.blogspot.com

Sleeping through the night!

Guess who slept 8 hrs last night????

Yep, you guessed it!

Go Malia, do it again!

Getting bigger!

Malia is now 10lbs 3 oz. Gaining weight like a champ!!! She's also 22 1/4 inches. She's come a long way in these past 3 1/2 months and we have so much to be thankful for! She is definitely spitting up less, we've figured out every trick in the book to keep her food down. She does still have the occasional moments but they are way less frequent.

Four weeks flew by!

Wow.... It's been 4 weeks from when we brought Malia home! Where has the time gone? I can not put into words the joy and elation we felt the day we got to take her home! We were a bit nervous I must say but excitement definitely overshadowed our anxiety. I'm not sure where to start since I have four weeks to catch up on but I guess I'll start with week one. Bare with me :)

Week One: We came home with Malia on a routine of eating every 4hrs. 105 ml's of milk, 22 calorie count formula additive, 6 feedings a day. She would eat about half of her feeding from a bottle with thickened breast milk and the other half of her feeding would be through her g-tube, 2 out of the 6 feedings were solely g-tube feeds at night(except the first night, read on). She came home with oxygen for the bottle feeds just to give her the extra energy to drink and keep her heart rate up. She also came home taking Propranolol for her heart 3x's a day and Prevacid 2x's a day for reflux. Feedings were taking about an hour each time with maybe 15 minutes for clean up. The first night home they wanted us to continuously drip her feeding into her over a 8hr time period. It sounded wonderful thinking we were going to get a full night's rest but that wasn't the case at all. Not ever sleeping with this child before, we had no idea that she could grunt and I mean grunt! It was so loud we were up all the time checking on her making sure she was ok. We still needed to get up every 4 hrs to change the milk in the pump b/c you can't leave breast milk out for 8 hrs. Needless to say, the "drip" plan didn't work and it was about to get changed the following night. The next day, Harley and I came up with a plan where he'd take the late night feeding, I'd take the early morning feeding, I go to bed early, he sleeps in a little. It worked like magic. That became our night time routine for the next two weeks. During the day though, things were not working out so well. She began throwing up her feedings in large quantities at least 2x's a day all over the furniture, all over herself, all over us. We were getting pretty frustrated and trying to figure out this sudden change. Just when we thought we knew the reason, we'd make the change only to have her throw up on us again. Grrrrrrr.......this girl was definitely testing our patience to say the least!

Week two: This week was the week of follow up Dr. appointments. We started off the week at the pediatrician. Malia was gaining good weight despite her throwing up, the Dr. increased her reflux medicine, gave us some good pointers, and was overall happy with Malia's progress. Next was the ENT follow up. The Dr. assumed her issues with her throat were the same since her voice hasn't really improved volume wise and wants to do a scope of her throat in 2 months to see if any healing has taken place. Then we had a follow up appointment with the pediatric surgeon to look at her g-tube sight, everything looked good. The last appointment of the week was with the opthamologist who did her eye surgery. We received wonderful news that her eye surgery was successful and she no longer has retonopothy. Yay, praise God!

Week three: She's still puking but it doesn't seem to be as bad. Maybe once daily or even not at all on some days. Things seem to be looking up for Miss Malia and then we go to "feeding clinic". Feeding clinic consist of a Doctor, Occupational Therapist, Speech Therapist and Dietician. They think it's best to put Malia on a 3hr. eating schedule, decrease her milk volume but increase her calories and then let her sleep 6hrs at night. The plan sounded good. Sleep 6hrs. of straight sleep at night, wonderful! Well........... not so wonderful. By the next day Malia was puking up EVERY feeding. We were absolutely beside ourselves! You can only get puked on so many times before you have a melt down. So, I had a melt down! Harley and I tried to brainstorm every possible reason she would be throwing up more. Were we moving her too much during or after feedings, was she upright enough, was her reflux medicine working or is the additional calorie formula too much to tolerate. We had no idea but we needed to make a change so we decided to take her off the calorie additive to see if that would make a difference. Well, it did. She was eating like a "rock star" keeping everything down and even finishing her whole feeding by bottle at times. We thought we had it all figured out again but then 4 days later, she started spitting up and even puking some of her feedings. How frustrating, we were back to square one!

Week four: The dietician suggested we switch calorie formulas so we did and that was even worse. Man o' man, finally I went back to the schedule before feeding clinic, tweaked it a little to coordinate with our schedule better and have been slowly getting her calories back up with the original formula. We go to the pediatrician next week, so hopefully she is gaining some weight and everything is ok. As of now, she is tolerating most feedings with minimal spit-ups. We have gotten really good at recognizing discomfort while feeding and know when to burp and know when to keep her completely still. Harley's step mom, Katie, and 2 little sisters flew in from IL. to help out while Harley is in Haiti this week. It has been absolutely wonderful having them here. Katie is a Labor and Delivery nurse and she has taken on the role of feeding Malia. It has been an amazing break and she's doing a great job! Thank you Katie!

Hopefully from now on these updates will be at least weekly and not monthly. We apologize for not blogging sooner but life has been busier than we have ever known it to be! She is absolutely precious and seems to be thriving at home.

Specific prayer requests for Malia:
1)Healing of her throat and vocal cords.
2)That her brain is developing on track with a normal six week old baby.

Discharge on the horizon!?

With the G-tube now in and functional there has been some talk of discharge for a couple days now.  There are still some technicalities to get taken care of, but it seems like the NICU is planning for a Tuesday (June 29th) discharge for Malia!!!  Seems almost surreal to us, the idea of not having her in the hospital anymore.  Not having to make that drive to see her only to despise having to leave her.  Not having to coordinate childcare (as often ;) ).  There's honestly not much we will miss about having her there.  We cannot wait to have her home!  It's going to be so awesome.

Ok, I'll admit it there is a little bit of anxiety around us becoming her primary care givers.  Not that we haven't had practice raising sweet little girls, but with this one we'll also be taking on more medical responsibilities.  So we all went to visit her today and started getting hardcore training on the things we need to do.  That G-tube thing is pretty funky by the way...  it has an extra burp tube that seriously makes her burp out of the tube when you put it in.  If you thought real burps smelled bad..... (just kidding..)  Also, learning more about the special mixture of milk she has to take.  We're having to pull some of our old math skills out of the archives to figure out the correct number of calories and thickness of her milk (different depending on if it's done through bottle or G-tube).  Keeping track of her different meds with the associated dosage and times.  Learning how to properly listen to her heart with stethoscope so we can identify irregularities if they arise and respond accordingly with vagal maneuvers in the event that the high heart rate (SVT) occurs.  Those are some of the things we have to keep tabs on.  If you're looking for something to pray about please feel free to keep us in prayer regarding this challenge.  Don't be mistaken, we're soooooooo happy she is coming home and we'll be able to hold her, love on her, and get this family thing back to where it left off.  Just some final details in the next couple of days and if everything goes as planned we'll be taking her home Tuesday sometime.

G-tube surgery

Since the eye surgery (June 11th) there have not been many changes.  Much of the same feeding, not feeding, on oxygen, off oxygen, back on oxygen.  Without the necessary progress on her oral feeding, the recommendation was made to go through with the direct stomach feeding tube (aka G-tube).  The surgery took place on Wednesday, June 23rd.  Although we did not want it to have to come to this, we were in agreement that it was necessary given the lack of progress on oral feeding.  The surgery itself brought little to no anxiety for me and Alison.  It was the fact that she needed to be intubated and sedated that gave us great concern.  The past 2 procedures, where those issues took place, the complications were less than fun and we did not want Malia or ourselves going through resuscitation-etc.  None the less we went through with it.  We prayed hard and had the opportunity to share our concerns with just about every and any doctor or specialist that would be involved.

As a side note, during surgery prep I learned that Malia had an episode of SVT (heart rate in the 280's) the prior day.  Was definitely surprised to find that out, via some side comment I picked up from a nurse, but was happy to hear that it was quickly resolved via the doctor sticking his finger in her throat.

The surgery went off without a hitch!  What a relief and blessing to not have any craziness post-surgery.  With this surgery completed it now opens up the possibility that Malia could be coming home soon.  Next step is to get her back on track with normal food in her stomach and gaining weight again.

Bonding with Malia

Some bonding time with Malia before she goes to surgery. What a sweet pea!

Kim visits from Denver

Kim came down from Denver to meet Malia for the first time in the hospital. She had some good cuddle time with Malia and then we went out for Mexican downtown. Kim and I have been friends for years. Our friendship dates back to kindergarten and we've been reunited ever since Kim moved to Denver in 2001.

A picture of Malia's big girl crib. She's outgrowing all the cribs, she needs to come home!

Actual Due Day!

Today is the day Malia was suppose to be born. She now weighs 7lbs. 12 oz. It was a hard day today because I've been wanting Malia home for weeks now and she's still in the hospital. Discharge is still to be determined but it could be another 2 weeks.

Malia's Baby Shower

My wonderful friend Kristen threw are baby shower for little Malia and myself. Kristen is an incredible momma, and talented baker, an amazing hair dresser, and a very beautiful woman who loves Jesus! Thank you Kristen!

The group of girls

A glimpse of Kristen's decorating ability, she's amazing!

There's a story behind this one, hence the facial expression.

Michelle's girls have one at their house and I covet it everytime I go

over there. She thought I needed one too so she got the small group girls to go in on

it. I can't wait to put Malia on it and get some pictures!

More adorable outfits!

Michelle, myself and Lauren

These are two of my dear friends from small group and also my

pool buddies.
Nickie and me

Nickie I have know the longest out of all the women at the shower.

We started working together back and 2000 and developed a friendship

that will last a life time

My other 2 small group girls and dear friends! Anne and Krista

Myself and Marlys

Marlys works at Compassion with Harley and I took care of

her little boy for several months before Malia was born.
Leilani, her little girl Sydney and Abby

These friends have been instrumental in helping with "the girls"

while I visit Malia at the hospital. Thank you!

Eye surgery for retinopathy

Speaking of her eye surgery...  The need for surgery was identified after the Tuesday (6/8) eye examination revealed that her left eye had gotten worse and now showed Stage 3 Retinopathy of prematurity (ROP).  The right eye remained at Stage 2 with no significant change.  When Stage 3 is identified they schedule the patient for surgery within 72 hours, and that they did.  Malia wasscheduled for Thursday (6/10) 2PM laser eye to treat both eyes.  Even though the right eye was not yet to the point of needing surgery they recommended to take care of it while they were performing surgery.  In hindsight, that would be a very good thing.  I was there for the surgery and loved being able to hold her for a good 30-45 minutes prior to things getting started.  One of the main concerns we had about the surgery was the fact that they had to intubate her.  Given the issues with her airway/vocal chords combined with the issues encountered in the previous procedure we were not too excited.  Thankfully the experts consulted each other and determined they would use a type of intubation that did not enter the airway but remains at the top (at a loss for the proper term).  So the surgery began and I waited outside for the estimated 30 minutes per eye.  Upon completion the Opthamologist came out and explained to me that the surgery went very well and as expected.  There were about 450 laser zaps in her left eye and 150 in the right.  Apparently these are relatively low numbers, as it's not uncommon to see more than 1000 per eye.  However, the success of the surgery will not be know for up to 2 weeks.  We're praying the retinopathy will be resolved, and her eyes will develop giving her the ability to see with no blindness.

After talking to the doctor at the completion of surgery I went in to be with Malia.  Having been sedated and on pain meds she was still way out of it but the ventilator was working like a charm keeping her very stable.  In the first hour after surgery she did have a few instances where her heart rate and oxygen level dropped sharply so they were watching her closely and adjusting the ventilator as necessary.  Still after about 2 hours she was just barely showing signs of waking up and then would return to sedation.  Despite Malia still being very much out of it she was starting to take breaths on her own.  Over another 90 minutes they weened her off of the ventilator to the point that she was taking almost all the necessary breaths on her own.  Eventually they got to the point of changing the ventilator into "CPAP" mode, more or less making the air available for her to breathe it as opposed to pushing the breaths in and out for her.  After about 20-30 minutes of solid breathing on her own she just all the sudden stopped breathing and didn't rebound.  Standing there with the nurse as she tried to stimulate her into taking breaths again it was evident that she wasn't bouncing back like previously.  Everything was a blur from that point, all happening so quick.  The nurse called in another nurse to assist her and within a minute they pressed a magic button on the wall which brought approximately 15 nurses, specialists, and a doctor within seconds.  Pulling out all the stops it seemed to be somewhere between 2 to 3 minutes when she was given a drug (Narcan) to reverse the sedation and pain medication helping to wake her up.  Once awake they gave her some breaths using the "bag" and pretty quickly extubated her removing all of the parts used in surgery.  From that point forward she was able to breathe fine on her own with little more assistance than what she was receiving prior to the surgery.  After being stable for almost 2 hours I called it a night and headed home.  For the next 5 hours, up to about 2AM when I called to check in on her, she would have a handful of apneic episodes where the nurses had to intervene using the bag 3 times to get her back to breathing again.  Later the next day we heard that after my call she remained stable with no issues the rest of the night.  Blocked from feeding prior, during, and for hours after this procedure she has just recently returned to bottle feeding where she continues to have limited strength and stamina drinking only small amounts.

Cardiac fears dispelled... almost... mostly

Wednesday (June 9th) we were able to meet with the cardiologist, who specializes in the electrical system of the heart, to discuss and clear up any confusion we have had around the prior diagnosis of Wolff-Parkinson-White syndrome (WPW).  The conversation started with him explaining the detailed reasoning behind her diagnosis, which still remains as far as he is concerned.  We have no clue where the prior confusion of it being dismissed came from.  Despite that we were very encouraged with the conversation.  Ultimately WPW is not all that harmful or scary when you know you have it.  Since Malia is known to have WPW we will be able to take effective steps (medication) to alleviate the risk of issues over the next 3-10 years.  We also have the prospects of Malia getting ablation surgery, prior to the age of 10, which can completely eliminate WPW if successful.  Also from the conversation we learned that the chances of WPW being passed on genetically are only about 2-3%.  Alison and I will both be tested in the coming months to determine whether either of us have it.  All in all, we left that conversation extremely comforted and pleased that WPW is not as scary as we thought.  Especially in light of her not having had any issues related to her hear since her atrial flutter was resolved when still inside Alison.  There's a good chance she could not experience any issues from it.  Woot!

Hold that thought....  Also while there we asked the doctor if they would be ok with taking her nose tube out (used for feeding and medicine) on the off chance that it would help her eat better.  The doctor agreed to try it out for a few feedings and either leave it out or put it back in.  So we were pretty excited about that opportunity and then called after almost every feeding.  Upon calling in the late afternoon we get the news that she was eating about 70%, but not full feedings.  Not so great - nose tube to go back in most likely... AND...  in the afternoon, just hours after us leaving and having our that great conversation with the cardiologist regarding WPW, we get news that Malia had an episode of Supraventricular tachycardia (SVT) where her heart rate was around 280.  Thankfully the medical staff was able to resolve it fairly quickly with the use of ice packs on Malia's face (Vagal maneuver).  Not having had any heart issues since pre-birth and having just had such a great conversation with the cardiologist this was definitely a challenging irony for us.  Adding to the mental stress was the fact that there was discussion 2 days prior of increasing her heart medicine dose due to her weight gain - which had not taken place until shortly after this episode.

Feeding/growing update

This was a busy week for the baby girl who still remains in the hospital. (see recent 3 posts)

Still not making any breakthroughs on feeding, she started the last week on the same pace as the prior week.  A full bottle feeding would sneak in from time to time but for the most part Malia gets really tired when eating and is exhausted about half way through.  We presume much of this is attributed to the fact that her feedings are thickened and thus harder to swallow.  Slightly discouraging since previously it had seemed like she might have been trending toward improvement.  This still being her key to coming home, we would really love to get back to those full feedings so we can have her home finally.  On Monday (June 7) there was discussion of a feeding tube (aka "G-tube") for the first time as well.  This would allow the food to go directly into the stomach - removing the possibility of irritating the airway and would presumably allow her to come home without taking the full day of bottle feedings.  This would need to be preceded by an upper GI study to examine her digestion and ensure she is a good candidate for the G-tube.  This was tentatively scheduled for Friday, only to be delayed later due to urgent eye surgery (more on that later).

Feeding/growing week (May30th-June6th)

This week (May30th-June6th) was pretty much an eating/growing week for Malia.  There were days of good eating and days where she would maybe take 1 bottle feeding.  Not nearly enough progress to warrant thinking about going home.
To keep things a little exciting Malia did give Daddy a little scare while I was feeding her.  As I was feeding her she began to get sleepy (as she does with many feedings) and all in one moment it seemed like she fell into a deep sleep and her heart rate and oxygen level plummeted.  I sat her up a bit to try and stimulate her and she ejected what she had drank up to that point and immediately her vitals bounced back up.  Surely added another silver hair to my collection.

Malia did break the 7lbs. mark though and was even showing some of that good old baby fat.  Grandpa Tree got to hold Malia one last time on Saturday before leaving Sunday night.

Olivia's Visit

Olivia (My neice, Malia's cousin) drove out to Colorado with Grandpa Tree and was able to spend an afternoon at the hospital during Malia's care time. She gave her a bath, changed her diaper and dressed her in a cute outfit. She's a real natural with babies and I'm sure Malia enjoyed the cuddle time!

Drink baby, drink!

Malia drank her entire feeding yesterday for me and today for Alison (58ml).  The milk is still thickened to "nectar" thick to avoid her chocking or having the fluid go into the lungs.  Also, she has to be positioned on her left side while feeding to also help ensure it goes down well (due to what Alison explained in previous post, there is a "void" on that right side).  On my visit yesterday I also had Alison's Dad (Grampa Tree) with me and he got to hold Malia for the first time.  Also worth noting, though no surprise to us because we've recognized it for a while, is that Malia passed her hearing test last week.
The significant areas of concern still are her brain development, heart diagnosis, and eye sight.  There was an eye exam last week to check for any change in status from the previous exam.  Previously she was diagnosed with stage 1 retinopothy, and in this recent exam it was reported as stage 2 - so slightly worse.  Regarding the heart diagnosis we have been slightly confused in the recent past.  The earlier diagnosis of Wolff-Parkinson-White syndrome, which we had heard was dropped, has been sneaking into conversation recently.  We noticed that we would be around doctors, specialists, or nurses that would continue to be making reference to her "cardiac problems" or to the "WPW".  At first we disregarded the initial comments as ignorance but as we continued to hear it we realized there might be something behind the scenes that didn't quite match what we understood.  Alison spoke with one of the neonatologists last week and found that the Wolff-Parkinson-White syndrome diagnosis does indeed still stand as far as they are concerned.  We are going to follow up and hopefully get some time with both the cardiologist and neonatologist(s) to discuss in more detail so we can understand what is what, and why.
It's really great to have Tree (Al's dad) here this week.  I think we're supposed to be helping him right now, but this guy is really helping us - what a great man of faith.  We also still feel very much prayed for and continue to be blessed with the support of our close friends. By the grace of God, through these many things, we continue to have the strength and press on toward the goal.

Man O' man

Well, I'm not even sure where to begin. This little girl is giving us grey hairs and we haven't even brought her home yet :) Last Friday she had a procedure done by the ENT (ear, nose, throat) doctor in the O.R. where they put a scope down her throat to determine if her vocal cords were paralyzed. We received great news that both cords have full movement but the vocal cord on the right side was damaged from when they intubated her at birth. Malia was very swollen and the tube had a difficult time going down leaving her with what they call a void in her throat, making it impossible for her vocal cords to close properly. So we receive great news and then this happens........ Shortly after her procedure while she is recovering in her room, Harley notices that her color changed from normal to blue in an instant. At that moment the alarms are going off alerting the nurses that her heart rate is dropping and something is wrong. They start to bag her (giving her breaths) and gave her medicines immediately to help open her airway. They finally get her stabilized and have to put her on CPap for the night. In hindsight, the Dr. thinks that the scope going down her throat was rigid and may have caused irritation to her already sensitive throat making her airway constrict and not allowing her to breath. Man o' man, this little girl almost gave her daddy a heart attack.

On Monday of this week, they did a swallow test where they took her to radiology and assessed how liquids travel down her esophagus. We were given the results of the test with good news and bad news. The good news being that she is able to eat out of a bottle as long as the breast milk is thickened. The bad news being that I won't be able to breast feed her until her throat heals and can tolerate thin liquids. The bad news did not even register as bad because we were just so thankful that she can now eat and is another step closer to coming home. Her progress with eating continues. The past several days she was only taking 20ml from the bottle and the rest of her feeding (34ml) was given through her tube. Today, they graduated her to a faster flowing nipple and Harley was able to feed her 50ml with no complications, almost her whole feeding!! We were so excited! Hopefully she will continue to eagerly drink from the bottle.

I am ready for this sweet little girl to come home. I am getting burned out traveling to and from the hospital everyday, finding childcare for the girls and coordinating their schedules with Malia's. I continue to trust in the Lord for strength and endurance and know that in His timing all things are perfect! He has been so faithful to us and has given us so much grace during this time. We praise Him for all that he has done and continues to do in our lives!

Loss of a wonderful grandmother

What a week...  Since the previous note (Can I get an AMEN!?) we have really been through some difficult things.  About a week ago we received the type of news many people dread receiving.  The type of news that I have received once before, but long ago.  "Mom's dead"...  To hear my wife say these words, after speaking to her father on the phone last week, was excruciating.  We don't really have any information regarding the cause, the initial autopsy showed no cause.  Vicky (I called her Vic) was in good health as far as we knew.  We have really been struggling the past week (in Illinois) as we mourn together with each other and with many family and friends.  It hurts... we feel knocked down.  Alison's mom has been one of the people to fill a void that was left after I lost my mom as a teenager.  Early on, as a friend of the family, she was this incredible woman who treated me like one of her own.  Now after being married to her daughter and fathering her grandchildren there is no doubt she had filled that void for me.  An AMAZING woman and mom!  Kayla and Lydia have had the most incredible grandmother in the short time they had her.  They, and Malia, will be missing out on years of joy they should have experienced with her.  The memorial service took place yesterday and highlighted her life of faith.  God was definitely center stage in Vic's life.  The belief that Jesus died for her's and for all's sin gave her the hope, during her time here, that everlasting life awaited her once done on earth.  That time has come, and now we push on with that same belief and hope.  God please give us the strength.

We're trying really hard not to lose sight of the rejoicing which was taking place in that previous post.  We received word a few days ago that Malia was still having difficulty with feeding.  As a result they had an Ear, Nose, and Throat specialist check her out in case there are problems with her vocal cords.  In the exam they observed paralysis on one side and possibly the other side as well.  The vocal cords play a role in the swallowing process, so this explains her slowness when bottle feeding.  As a follow-up they scheduled an MRI to find out if the paralysis is related to the brain in any way.  We have not yet received the official report from the MRI, but we did receive a preliminary call from the doctor today sharing some information with us.  The two things we heard were that Malia does actually have cysts in her brain.  The doc said that the size was not causing any great concern to them right now.  Also noted was that they observed underdevelopment of the brain.  The brain is expected, at this point, to extend to the edge of the skull and that is not the case for Malia according to the MRI.  The doctors hope, and ours, is that her brain will continue to grow and develop during the next month.  We still wait for more information from the full analysis of the MRI, but yea this new info isn't easy for me to swallow right now.

Can I get an AMEN?!

I've wanted to do more journaling than I have done in the past week or so.  Now back to work, my daily routine has somewhat returned to what was normal before March 31st.  But let's just cut to the chase....  I love this day!!  We're so unbelievably thankful for what God has done with our Malia!

We spoke with a good friend of ours today, Dr. Bob.  Sure he might not consider us friends but that's beside the point, we love this guy. :)  We talked through many of the ongoing issues and corresponding treatments Malia is going through with Dr. Bob.  According to our friend, the diagnosis for the heart syndrome (Wolff-Parkinson-White syndrome (WPW)) has "been dismissed".  Say what!?  The situation with the "brain cysts" has changed and they aren't really even recognizing any such cysts at this point, rather only seeing white matter which they have not much concern about.  Are you freaking kidding me?!  This is HUGE news!  Which makes me wonder if I have some sort of brain problem right now because sitting here I can barely wrap my mind around how awesome this is!  Further, he went on to tell us that they intend to take her off of the heart medication (propranolol) prior to discharge as well.  ....  .........     ..........     .........     ...................... ......... .  .............................. ............ .   No, that's not morse code for something else I meant to write - it's me at a loss for words.  Seriously, take a look at the Birth-day post and the corresponding picture then come back to this one.  

Be amazed - I am.  We are.  This baby was being pumped with air, meds, blood and grasping on for dear life.  I can't help but echo what Alison wrote at the end of that Birth-day post - "God has something BIG! in store for this little one."  If you have been praying for this little one, and our family, know that your prayers have been answered and please pause to give thanks.  As I do that right now myself I can't hold back tears.  I think that "something BIG" Alison referred to is already in motion - impacting the hearts and minds of the people bearing witness to her life as it unfolds.  Can I get an Amen?!  AMEN!

Thankful for so much...

The past four weeks, as you all know, has been a time of trials, praise, uncertainty, more trials, more praise, and still some uncertainty as Malia continues to grow, become stronger, healthier and more precious by the minute. We want to take a moment to say "THANK YOU" to everyone out there, around the world, who has been praying for this tiny little life who we have all come to love named Malia Joy. THANK YOU so much for all the encouraging emails, testimonies of similar situations, phone calls, cards, text messages, visits, childcare and meals. We are truly grateful and praise God for all your prayers, support, and love during this past month. The generosity and love you've all extended, and continue to, has brought us to tears on more than a few occasions. We have also loved hearing stories about how little Malia's heart (problem) has changed hearts all over the world as people rally together to pray for her and as God continues to heal her. We serve such an amazing God!
We were reminded this past Sunday from the sermon that we can trust God everytime to give us mercy and grace in our time of need. Whether we consider ourselves as christian or not christian, God extends his mercy and grace on everyone. We have felt God's mercy in so many different ways through all this, from emails coming at just the right time with encouragement or sensing a great peace that is unexplainable to just knowing that our Savior (Jesus) understands. He has truely given us the strength and energy to endure this past month and continues to give us his grace daily as we juggle spending time as a family at home, trips to the hospital, daily activities and Harley going back to work. Each day we continue to ask God for what we need and trust Him for his presense and grace through this difficult time and believe that he will give us exactly what we need to endure.

Continuous improvements

The past few days have been more up and down emotionally than I would expect given Malia's physical condition/appearance.

Recent brain ultrasounds have shown official reports from radiology that the cysts still exist but are unchanged.  Though we received what could be perceived as doom and gloom news from the initial scan was not the case with this latest.  Even though radiology reported as they did, the neonatal doctors on this week are in agreement that they don't believe them to be cysts at all.  It's complicated for me to dictate in words on a blog, but the brain pictures they are looking at are not as simple as a single image.  They look at dozens of images which are single perspective slices of each part of the brain.  What the doctor(s) explained to me, and makes sense logically as I looked at the images myself, is that what they see being reported as cysts are more likely just a continuation of the horns of each ventricle.  See, told you it's hard to explain... I've said it before, the complexity of the human body far supersedes the knowledge we as humans have of it.  We continue to trust God with her life, and are eternally grateful for all of the prayers each of you continue to lift up for Malia and our family.

Regarding her heart, the recent EKG was analyzed and assessed by the cardiologists.  The report I received, from one of the nurses, Monday night was that they made a diagnosis.  Based on the EKG they believe Malia has what is called Wolff-Parkinson-White syndrome (WPW).  We are still waiting to meet with the cardiology team to discuss this assessment further, but also received mixed comments from other medical staff as to how definite this diagnosis is.  Though treatable with medication, and possibly later in life with invasive risky surgery, I (as a father) of course want to see this diagnosis just go away.  So yea, I'm praying for that.
Also, regarding her heart, they have stopped giving her Digoxin and are now giving her propranolol.  Apparently this is a much gentler drug and we have seen her typical heart rate change for the better since that change was made.  Malia is still receiving Lovenox, a preventer of clotting, in response to the blood clot seen in her heart.  They were scheduled to echo her heart today to check the status.  Depending on the results, we are still waiting for, she may be taken off of that medication.

On a lighter note - this little girl, with all of these apparent problems on the inside, now appears as normal as any other healthy "33 weeker".  The stability of her vital signs, physical development, food intake, all are indicative of a stable preemie of her age.  All of the various medical staff continue to visit her and comment on how amazed they are to see this little princess looking and doing so well.  It was nearly 3 weeks ago when all of them (myself included) were in similar disbelief of the quasimodo looking littler girl.  Yes, I can't lie, though the person of Malia equaled nothing but beauty to me she was not looking good back then.  Of course I love her no matter what, but the truth is Malia is now flaunting her full fledged NICU beauty queen status.  In light of her progress with breast milk intake, they are in the process of a triall period with her off of supplemental IV foods.  Anyone remember a while back when we asked for prayer because they were talking about not being able to use breast milk?  Thanks to our friends for praying and thank God for providing, simply amazing.  Also, over the past 4 days they have been graduating Malia to simpler beds almost daily.  Late last night she was moved into an open air "crib" which means she is controlling her body temperature on her own and is resilient to external noise/light.  Lastly, she is now off of all pain medication and seems to be suffering little to none withdrawal of the narcotic she was on (fentanyl).

Happy 2 week birthday to Malia

I loved letting Alison hold Malia yesterday, but they still are only wanting one "handling" per day so I watched the girls while momma enjoyed.  Today it was MY turn to hold my baby girl!

I think we have maybe seen her accidentally twitch into a smile once or twice before.  Today we got about 5-10 minutes of off and on smiles.  Sure it might have been delirium from getting off her narcotics (fentanyl) or maybe a long string of gas... but to me it seemed that she was smiling when I talked to her.  Wow!  Wow, wow, wow!  I was eating up every bit of it.

There are smaller babies on the NICU but Malia is definitely the smallest baby I have ever held.  Having dropped about 3 lbs since birth (which was a good thing) she had a very small gain today bringing her up to about 3lbs 11oz (which is also a good thing - meaning she is starting to process the milk they are pouring into her stomach).  Malia's birth weight was about 6lbs 8oz, so yea we have seen a lot of change in the past 2 weeks.  Malia still doesn't have great eye control though it does seem she tracks to my voice occasionally like it appears in the photo to the left.

Tomorrow they will be doing another ultrasound on her head/brain to recheck the cysts that were observed previously.  Also an EKG will take place to check on her heart.  We don't know any details, but we have heard reference to the cardiologist possibly seeing something that might elude to the cause of the initial problem(s) with her heart.

Holding Malia

What a wonderful feeling it was today as I got to hold Malia for the first time! I waited almost 2 weeks for this moment and it felt so good! The girls also came with us to the hospital and they finally got to meet their little sister. Kayla was able to listen to Malia's heart beat while Lydi gently held her hand. It was a precious moment seeing our whole family together for the first time since Malia's birth. She continues to get better and tubes are disappearing left and right. They took her off the ventilator on Friday, transitioning her to CPAP , then today (AM) she was only needing small amounts of oxygen from a nasal cannula . Malia is also beginning to tolerate increased amounts of breast milk receiving 8ml every 3 hours. Isn't God good! My baby girl is absolutely beautiful, precious, and just down right perfect!