Hampster Cage

Because I don't have the mental energy to write a long blog, this will be short. Here's where we are. Kaylan will be in the hospital awhile longer...not really sure yet how long. She's not gaining weight. They can't discharge a baby that's not gaining weight. They've upped her calorie intake but she's not tolerating it well and she's throwing up most of what she consumes. I feel like I'm spinning my wheels in a hampster cage. They are calling her "failure to thrive" (google it). If we can't get her to consistently gain weight and keep down the volumes she's taking in, then we'll be looking at other options like coming home with a G-tube (surgerically inserted feeding tube). That's obviously not what we want, so we'd rather her stay in the hospital awhile longer and try to get over the next hump. Once she comes home, we want her to STAY home.

We're battling with the Lord every night for her. Please do the same with us. She needs the prayers. I don't want my faith to experience "failure to thrive".

Sooooo close....

Wow - what an AMAZING turn of events in the last 72 hours for Kaylan. It's been an emotional weekend! Kaylan had a second swallow study on Friday. It was determined that she has been aspirating on the half nectar thickener....thus causing the "wet" lungs and also causing difficulty in breathing. She's now on nectar and a half (think syrup in your milk) and that seems to be the magic potion. Since she's now on this thicker thickener, she is OFF OXYGEN --- that's right...NO OXYGEN!!! She's been off of it since Saturday and doing great so far! We are praying that she has kicked the canula and will be coming home tube free!! She's also now taking 8 of 8 feeds via bottle. She pulled out her feeding tube tonight (I think she might be trying to tell us something) :-)

If all goes well, she should be home by the end of the week. I can't believe I'm actually writing that sentence....the doctors ordered the car seat study for her so that's one of the final steps before discharge. We are so excited we can hardly stand it. We know that we'll be trading one type of "hard" for another, but we will be so happy to be DONE WITH HOSPITALS...hopefully for GOOD!

Please be in prayer for these specific things this week:

1) Kaylan to continue feeding comfortably and complete bottles
2) for her oxygen and breathing to be managed without any assistance
3) for her to continue to grow and gain weight and develop appropriately

We are looking forward to posting some pictures of our babies together again instead of all these individual shots. Here's to hoping that the next blog post is called "Coming Home!"

Springs...

What an incredibly exhausting week! We are quickly approaching 4 months with little Kaylan in the hospital and it has not gotten any easier. In fact, it seems to be getting even harder at times. We are so worn down from the multiple daily trips to the hospital, normal life routine, and taking care of a newborn. It’s a level of exhaustion that’s new to me. It’s beyond a mental and physical tiredness; it’s a fatigue that seems to have crept in to my soul. Sure, there are times when I have good nights sleep or get some good rest, but the routine of not only dealing with life, but having to process and internalize Kaylan’s recent analyses and diagnoses has really crippled our energy levels.



After almost 5 weeks of hearing “she just needs more time” from the doctors, they finally started an aggressive approach to finding out what is wrong with Kaylan and how to go about treating her. Now that she is finally on 3 medications including a diuretic and Prevacid, they performed another swallow study to try to figure out why she isn’t able to consistently complete her feeds. They did a series of trial and error thickeners and nipple sizes until they think they’ve cracked the code. It turns out that she had been aspirating on her feeds so they’ve upped the nectar content to slow the milk down so that she can handle it. So far, it seems to be working, but we are only a day in, so we will have to see. We are just glad that they are finally doing something to help get her home.


I was raised with the idea that faith is a constant. You either have it or you don’t. There is no in between. It is like a brick. Concrete. Absolute. Firm. Always solid. I am learning that faith is much better described as a spring or a bungee cord. There is time for expanding, stretching, growing, accepting. And there are times for contracting, questioning, giving, challenging and then repeating. I am leaning that Brickianity, for me, does not work. The minute I have God figured out with my definitions, my timetables, my expectations, my nice lines, then I am no longer dealing with God. I am dealing with someone I made up to fit my wants/needs. Someone I can control. Over the past few months, Brickworld, for me, has crumbled and I am learning to live with the faith of springs. Not my timing, His.

So as we continue to muster up energy to handle the craziness of having 2 babies in 2 different counties, I am being streched like a spring.  But as I am learning, spring-like faith is much more real than that of a brick. 

Pulmonary A-whata?

Pulmonary Edema and Respirtory Acidosis. (Now say that five times fast). That's the latest on little Kaylan...So what is it and what does it mean? Well, a Pulmonologist came to see her on Monday (that's a pediactric lung doctor). They ordered a chest x-ray to see if they could see why she was still needing the oxygen. The x-ray came back showing that the lungs looked a little "hazy" or "wet" as he called it. When he examined her, he still heard Kaylan's heart murmer and said he suspected that blood was flowing from left to right and spilling into the lungs a little bit causing them to be "wet" or "hazy" -- better known as pulmonary edema. He ordered an EKG (heart sonogram) for Kaylan to see if his suspicions were correct about the murmer/PDA. The EKG was reviewed by a cardiologist who said that she still has a large to moderate PDA (open duct in the heart that should be closed by now). Soooo....now, they have started Kaylan on three medications - 1) a diuretic that will make her pee and poop a lot and get rid of some of the fluid in her body and on her lungs. 2) Prevacid for Acid Reflux (FINALLY - I've been begging for this one) and 3) a steriod inhalent called Flovent to help with inflamation of her lungs (it's very similar to an asthma medication) - it comes in an inhaler. They put a little mask over nose and mouth and puff the inhaler in her mouth and into her lungs. This will help with the respirtory acidosis whereby she's not getting rid of all the CO2 in her lungs when she breathes out.

With these three changes we're REALLY hoping we will start to see some big improvements in feeding AND breathing. The downside is the diuretic will make her lose weight. Additionally, this PDA and heart murmer is not good either. She'll continue to be followed by a cardiologist and could eventually need surgery if the valve does not close up. But we'll cross that bridge if and when we get there.

She's currently 5 lbs 14 oz.....soooo close to that 6 lb mark. Dylan had a dr appt last Friday and he's 9 lbs 10 oz!! Whoa! He's a biggin'.

Some lyrics from one of my favorite worship song are heavy on my mind today: "I believe You're my Healer. I believe You are all I need.....You hold my world in Your hands"

Here's a few new pics of both kiddies.

100

Day 100. Ugh. Why? Why are we still in the hospital? 100 days of driving back and forth (28 miles round trip), 100 conversations with doctors, 100 pumpings, hundreds of blogs, hundreds of tears and millions of prayers. Our blogs are starting to get redundant. I don't even know what to write anymore. I have blogger's block now. You probably don't even like reading anymore. I HATE that Kaylan just has to lay in a bed all day every day...She needs more stimulation and she needs to be home. I'm frustrated that we've had a few nurses lately that we've never had before - which seems unacceptable to me at this point. I've been told "we can't make every family happy", so he who screams the loudest, gets heard, I suppose. I don't have the energy to scream.

Please join us in continuing to petition our Lord for fast, complete and total healing for our baby girl. It's starting to feel like we are in a wrestling match with God. As our pastor said tonight, sometimes God wants to transform our lives before He blesses our circumstances. I know He's working on me (us) and He's making us wait on His timing and His plan as He continues to transform. Lord, give me patience to trust.

Tap, Tap...Is this thing on?

Well here we sit on day 98 with our sweet Kaylan still in the hospital. I gotta be honest...this is REALLY getting old. She's STILL having difficulty with the bottles and STILL needing oxygen. Ugh. I have begged and pleaded with God for total healing and restoration in Kaylan. Don't get me wrong - she's overcome some massive mountains in her short life so far, but it's starting to feel like life is passing us by as she lays in the hospital each night. I'm kind of done with all of this...like, c'mon already. Let's pick things up a bit Jesus...snap, snap. Oh waiiit....yes, things aren't on my timing are they? You'd think I'd learn that by now. Well, either way, I'm thankful I serve a God that can handle my frustrations and tears, even if sometimes I do feel like He's not listening. Oops, did I just say that? Just being honest folks.

With each day that I go to the hospital, I'm more bonded to the other families that I know that have had similar experiences with babies in the NICU. You just don't understand unless you've been there. One of Landon's favorite pastors, Rob Bell (of Mars Hill Bible Church), said that people are united when they've gone through suffering. If you ask a crowded room of people to raise their hands if they've been to Disneyland, you might get some hands raised and a few smiles around the room...But ask that same crowd if they've ever had someone in their family die from cancer, or if they've lost a loved one and there's instantly a deeper connection among those with the same experiences.

So, as you continue to pray for Kaylan (as I know you are), please lift up the other 20 or so babies in the NICU at Plano Presby right now. I don't know all of the circumstances that have brought those babies to the NICU, but I know they need prayers too. I do know of two of the babies in the NICU that have recently had surgery within the last day or so....Surgery! Can you imagine the stress in those poor moms as their teeny tiny babies are operated on?! So thankful we have not had to go down that road. I hope that stays that way...forever.

My prayer for Kaylan and all NICU patients...

(Isaiah 58:8 NKJV) Then your light shall break forth like the morning, Your healing shall spring forth speedily, And your righteousness shall go before you; The glory of the LORD shall be your rear guard.

Road Trip for Dylan; Kaylan Going Tubeless....

Yesterday, we celebrated 3-months of life for Kaylan and Dylan. I think it has probably been the longest 3-month span in my entire life.  At no other time in my life have I had to juggle so much at the same time as I have over the last fourth-of-a-year.  It has been so crazy, and while I would not wish that anyone ever have to endure what we have over the last 90-days, given the chance to do it a different way, we would not change a thing.  Having said that, we definitely want to get our sweet Kaylan home and begin the next chapter of our life. Ninety days in the hospital is long enough!

Besides being the 9th anniversary of 9/11, it was also a big day for Big Dylan.  Jen took him out of town for his very first road trip (they went to East Texas for her cousin's baby shower).  He also went to church for his first time.  He did awesome with both.  He has demonstrated that he can handle an extended period in a car and he also proved he does very well in large crowds.  I wasn't sure how he would do at church, but given the fact so many people there have lifted him and Kaylan up in prayer, it was as if he was at complete peace.  He topped off his good day by sleeping 7 straight hours!  It's true, I actually got up twice to see if he was still breathing. 

Miss Kaylan, although now treated as lepper since being diagnosed with MRSA, also has had a good weekend. Despite having contracted the bacterial disease (NOT staph, just colonized MRSA), she continues to get bigger and stronger every day.  She has started to really get the swing of feeding and has taken all her bottles over the last 2-days.  She is still only getting 4 bottles a day, but that could increase in the next couple of days if she continues to suck down her food like she did this weekend.  They trialed her off of oxygen today.  We have been praying that she would do well and not have to come home on oxygen, but she showed she is not quite ready to kick the nasal cannula just yet.  They will probably try her off it again in a couple of days, so we will pray that her lungs can strengthen enough to graduate from oxygen assistance.  She now weighs 5lbs7.4oz!

Here is a couple of pics from the weekend...

Hermine, Code Black and MRSA

Well today was an interesting day. If you live here in the MetroPlex, you know we were flooded (literally) by Tropical Storm Hermine. The rains came hard and fast all day long. I guess you can say it rained on my parade. I had intended to go to Kaylan's Noon touch time, but the weather was so bad, I opted against it. Landon, Dylan and I all went to the hospital tonight for her 6 p.m. touch time. When I walked into the NICU, all the babies were lined up in the hallway (away from windows). The hospital was having a Code Black due to weather and concern over tornados in the area. So, Kaylan was being shuffled around as were all the other NICU patients. Things should be settled down soon after the warnings subside.

We also learned that Kaylan tested positive for MRSA today. They swabbed all the babies in her wing and she has it. MRSA is a germ that is no longer killed by certain antibiotics. It can cause different kinds of "staph" infections, including pneumonia, blood stream infections, and wound infections. Some healthy people can "carry" this bacteria for a long time without getting sick, but can still give it as an infection to other people. It's spread by contact (touch) with a person who is infected or colonized with it, or with an object that has the germ on it. What is the difference between infection and colonization? An infection is germs growing and multiplying and the body is trying to fight them. Colonization is germs living in a body, but not making the body sick. Everyone is colonized with bacteria in certain areas. Infections occur when these bacteria get into an area where they don't belong. Right now, Kaylan is not showing any symptoms of being sick. The doctors say the germs are colonized in her nose (where they did the swab). This is yet another thing we will add to our list of things to pray for in regards to her health. It just seems like our baby girl can't catch a break. We were told that another baby had it in the NICU and therefore they tested everyone in that wing. It's possible that a nurse that touched the other baby, also touched Kaylan and therefore transferred it. We can't be sure, and we certaintly wouldn't cast blame - heck, it could have come from Landon or myself, we just don't know. It's most known for being in hospitals, but these days it runs rampant in the community, day cares, playgrounds, churches, family, friends, you name it.

As for her feeds, she still seems to be stuck in neutral. She'll complete some of her bottles during the day, but not all. The developmental therapists still say she just needs more time. If she's still in this same position in another week or so, the doctors will regroup and see if they need to come up with a new strategy to improve things. Since she's now two weeks past her due date, they are really pushing to get her discharged soon. She's basically acting like a 35 weeker now. Her weight is now 5 pounds, 1 oz. Weight gain is on the right path, although she's still loaded up with extra calories, fortifiers and thickeners. When she does come home, I will have my hands full just trying to mix the concoction of ingredients for each of her bottles. I'm tired just thinking about it. It's a reminder that to me that just cause she comes home, things won't necessarily be "normal". Kaylan is likely in for quite a rough road for the next few years. She's been behind the 8 ball from the get go, and things don't just come easy to her. Here's hoping she's got her daddy's determination and her mom's strong will to do things her way ;)

I know we probably don't even need to ask you to pray...but we'll ask anyway. It's all we've got...and prayers have been answered time and time again for these little miracles. We're continuing to trust.

Five Pound Bass

Well, apologies for not updating the blog in a few days...it's been a little hectic around here. Landon got sick on Sunday morning with high fever, vomiting and a horrible headache. So, I've been on full time Dylan duty since the weekend. We're not really sure where Landon got sick, but he appears to be on the mend now so we are thankful for that. I think I've washed our sheets 3 times and scrubbed every door knob and remote control and every possible thing he's had his little germy hands on :) We can't be having sickness in this household!

Kaylan had her VCUG test. This was the test that was going to be looking at her kidneys and bladder to see if she was having any reflux in those organs. The test came back perfectly NORMAL! In fact, the doctor used the word "remarkable!" Praise God for that. We're so thankful...she doesn't even need anymore amoxcicillin (she had been taking that as a preventative for UTI's). She also had her eye exam earlier this week. She now has Stage 2 Retinopathy in both eyes. Last time, it was between stage 1 and 2. While we don't want to see her eyes get worse, Stage 2 is really still within the realm of acceptable and not requiring any treatment. Additionally, the doctor (who had been seeing her every two weeks), now doesn't need to see her for another four weeks. That tells me that he's not too worried about this progressing to something worse if he's willing to wait a whole month to see her again.

The doctors continue to be somewhat non-commital when it comes to when Kaylan can come home. Right now, we're just waiting on her to master the bottle thing. She's getting a little better and a little stronger each day. So, it could be as soon as a week, or another few weeks depending on how she progresses. She's still needing some oxygen support but we're hopeful that her lungs are improving each day as well.

Big Dylan is thriving at home......he sleeps a lot during the day and just LOVES to be awake at night. Sigh. So, we're working through it. He's sleeping in his crib most of the time though so I feel that is at least on the right path.

I titled this blog "Five Pound Bass". Those of you listen to the great Robert Earl Keen may know of his song called Five Pound Bass. Well, my dad (ever the avid fisherman), has always said to me "I've thrown back bass bigger than Kaylan". Well...miss Kaylan is now officially FIVE pounds! Woo hoo! And just shy of 3 months old too...I'm sure for the next two years I'll be dealing with a lot of odd stares when people find out how old she is. Ha.

PS - Happy Birthday to Uncle Patrick!

Here's a few more new pics of our sweet little angels...

Stop and Consider the Wonderful things God has done

Happy Labor Day...Hope everyone is enjoying a nice long extended holiday weekend. Landon is off work today and we've enjoyed a relaxed day together with Dylan while taking shifts to go see Kaylan. Doctors  are still working through the right concoction of milk, additives and thickeners to allow Kaylan to continue to complete bottles and gain weight. She's 2 ounces away from 5 pounds! She has good days and not so good days with the bottles. She still gets pretty tired and she's only taking 2-3 bottles a day. The rest of the feeds are administered through the feeding tube. She's now on the lowest oxygen settings available - in fact, she's on the settings she would be on if she went home on oxygen. We're STILL pleading with God that she will NOT have to come home on oxygen. I'm ready for that sweet little face to be TUBE FREE! 

We went to a dinner last night at our church and enjoyed visiting with friends. The focus of the dinner was to acknowledge progress that's been made towards a debt on our church property. I was encouraged to hear the testimonies of God's faithfulness over the past three years as our church has participated in a financial campaign to reduce the debt on the building. One of the nuggets of info that was passed along was that since the campaign began, there have been 116 babies born at The Branch since 2007 - ONE HUNDRED AND SIXTEEN! Wow! Talk about being FRUITFUL! I'm so thankful we're apart of that number. The past three years have had its own set of challenges, but none like what we've experienced over the past 3 months. We continue to plow forward in looking forward to the day that BOTH babies are home and under one roof. Kaylan is officially the most tenured patient in the NICU right now...not one baby has been there longer than her. She's the senior and it's about time for her to graduate! We're approaching their 3 month birthday. It's crazy to think what all has transpired over these past three months. It's easy for me to get frustrated with slow progress with Kaylan but I have to stop myself and focus on the GOOD things that have come from the past three months. For one, Kaylan really (by all accounts) should have never survived, but here she is---closing the gap on five pounds and taking bottles. Dylan, who was also born teeny tiny is now doing fantastic and getting a lot of lovin at home.

We still ask you to pray for Kaylan's progress...she's close, but she's not there yet. Thank you for loving our babies and walking this journey with us.

"Stop and consider the wonderful things God has done." Job 37:14