New Pics...

 A few pics from the last couple weeks.  KelliAnne has grown into some of the newborn clothes that adorn her wardrobe so her mom really enjoys dressing her up for any trip out of the house or even to go downstairs to the living room ;)

C.E.L.E.B.R.A.T.E.

KelliAnne has been home with us for just shy of one month. The last several weeks have been an outstanding welcome into parenthood outside the NICU.  Yes, there have been plenty of sleepless nights, diaper blow outs, spit ups, and “what the heck does that mean” moments; but we would not have it any other way.

There is also quite a bit to celebrate. See below Tobin’s Top 10 Reasons to Celebrate:

1.      It is Robin’s Birthday. She is one amazing woman who has had quite a year. Happy Birthday Mama!

2.      Today is actually supposed to be KelliAnne’s birthday as well. Robin and I are still amazed that for the last twelve weeks, we have watched her grow and get healthy out here in the real world, and she was not even supposed to have even been here….  Apparently she did not want to share her birthday glory with her mom and wanted her own BIG day.

3.      Packing on the pounds-KelliAnne is now up to 5lbs 10 oz. She came home weighing little over 4lb.  We are still battling a bit of reflux but are learning how to balance nursing, bottle feedings, and extra calorie fortified feedings to get her big and fat.

4.      Robin can almost, ALMOST read the entire blog without crying.

5.      KelliAnne has officially graduated from the NICU. We had an appointment with the Children’s Spot, Saint Luke’s follow-up clinic, to examine her developmentally. The same doctor who saw her the day she was born, saw her yesterday and was ecstatic with her progress.  She is now a healthy ‘term baby’ with no major issues.

6.      MRI – KelliAnne had an important MRI done this week to follow up on the slight hemorrhaging she had in her brain.  The hemorrhage has completely evolved, or disappeared, and all other brain development that is to  be expected by a term baby is now present.  This was great news to a couple of parents that have been awaiting ‘MRI Day’ for several weeks now.

7.      NO MORE HEART/APNEA MONITOR. Yes, that is right - the respiratory therapists reviewed the download of KelliAnne’s apnea monitor and decided she no longer needs it.

8.       Eye Exam – KelliAnne’s slight disease in her left eye has not worsened, and is looking like it will clear up in the several weeks.  If it doesn’t the doctors are watching very closely and are ready to do laser surgery at the first sign that the disease is progressing.  The good news is that the laser surgery does not just stop the eye from getting worse but actually can repair it to healthy condition.  This is not what we originally thought.

9.      Her body hair is actually clearing up pretty good as well.  As most of you know, and if you didn’t notice from the pictures of me holding her, she has the genes to be abnormally hairy.  Just as the doctors told us, the back, shoulder, and facial hair that covered her body has pretty much all disappeared and.  

10. - F.F.F. Faith, Family and Friends. The last few months have been unexpected and trivial, yet completely awesome at the same time.  Dating back to mid-April when Robin was first hospitalized and then put on bed rest, our faith, family, and friends have been more then constantly showing up when we need them. We cannot express how thankful we are for EVERYTHING that EVERYONE has done for us. We always had good food, a clean house, a walked dog, plenty of thoughts, and enough prayers to help us pull through this time. Words cannot express how grateful we are for all of that. Throughout this time we have been told how strong Robin and I are, and that our strength is the reason why KelliAnne, who was once referred to as the “sickest kid in the NICU” came home at 35 weeks when we were told no babies go home before 36 weeks. Our strength came from F.F.F.

And scratch # 4. She is crying again.

We love you all and thank you again for helping us get through this journey. As you can tell we are not updating the blog as frequently as there is not as much action, but we will post a fun story and some pictures every once in a while so those of you that don’t see KelliAnne too often can keep up with her story.  

Happy 4th of July!

Seven long weeks after KelliAnne was born, she was able to declare her independence from the hospital today.  She has done everything required of her to show she can continue to thrive outside the hospital walls, so we were surprised this morning to the question asked of us by her doctor.  "Would it just ruin your day if we sent your baby home today?".  Robin and I looked at each other and started laughing because we have juse not allowed ourselves to get high or low with each glowing report received.

Just this last weekend she was doing so well that they told us she very well could be going home within the next week.  We kept this news pretty hushed for the most part, and the very next morning she was actually put back in an inucbator because she struggled to keep her temperature where it was supposed to be. This was a shock given 8 or 9 days were spent in an open crib without problems.  We rode that hurlde out, and after 48 hours in the incubator she had great weight gain, and they put her back in the crib.  She handled that well, along with eating all feedings by mouth (no more NG tube), and then we knew we were close to going home.

We stayed in the hospital with her on Monday night, but we were booted from the room the following day because a higher priority took our spot.  This was a bit discouraging because we thought they would not discharge her without us staying 48 hours in the hospital.  We stayed late at the hospital on Tuesday night, and arrived this morning, Independence Day, to the awesome question asked by the doctor.  Of course we said yes, and about an hour later we were out the door, baby in tow, looking to continue our adventre with a start as a family at our home.  The first order of business as a family was a long nap that was needed by everyone.

Here are a few pics of the most memorable 4th of July we will likely ever have.

Cross one off the list...

It was a sultry Midwestern Summer night, and KelliAnne Race was feeling a bit spry for her age. She may have been fueled by the excitement of another 1oz weight gain earlier that day, or even the pride in taking a much needed poop that had evaded her all day. Perhaps it was the chance to quiet her critics and do what many babies her age struggle to do every day. The stage was set.

KelliAnne vs. the Graco SnugRide car seat... 

 Her nurse woke her from a 3 hour slumber, changed her dirty diaper, and gave her one last meal before she was to approach her opponent for the first time. At 11:30PM CST KelliAnne was lifted from her crib and taken to her temporary resting spot, and one that she hopes to know well after she escapes the hospital walls. KelliAnne ain't no fool though; she knows respect is earned.

The nurse said that as she set KelliAnne in the seat she had a different look about her, as if a wave of confidence you rarely see in a baby still 5 weeks befor their actual due date will demonstrate. KelliAnne quietly tapped her chest, through a prayer to the Lord and took her seat for 90 minutes of adrenaline charged car seat time.

 Then, it happened. She quickly drifted to sleep, and was resting so peacefully the nurse dared not wake her, rather they grabbed her from her seat 2.5 hours later when it was time to wake again for more delicious food. The Mighty SnugRide fell in defeat and agreed to be KelliAnne's companion during the next couple years worth of road trips to the lake.

 As for KelliAnne she crossed this hurdle off her list and added this accomplishment to her impressive resume.

Remaining items on to do list:
- eat more food
- gain weight

Other Good Stuff going on

- She is actually getting her car seat test tonight - to leave the hospital the baby must be able to sit in their car seat for 90 minutes without experiencing any bradycardia or oxygen desats.  She gets put to the test at 11PM tonight.  "Why is she taking that test?", you may ask yourself. It is because she is nearing the end my friends. 

- feeding 3 times a day orally.  She will need to be more consistent with oral feedings and demonstrate she is trending towards 8 full feedings orally, while still gaining weight. We will see what she is capable of this weekend when mom can be there for more feedings.

- they have weened her off of the extra calorie supplement added to her tube feedings, and removed the extra protein as well.

- Oh yea, she is no longer in an incubator.  She is in a regular crib now and doing pretty well with the temp control.  If they could figure out how to regulate the temp in that room, she would do even better.  I am pretty sure when Robin and I are cold sitting there, that the AC is a little strong.  They claim it is a solid 74 degrees at all times.  Just strange that our cold skin seems to be in sync with when she fails her temperature tests. I'm not saying anything......... I'm just saying.

Now don't jump the gun here folks, we don't have any solid dates, but they have told us to prepare our home for the arrival of a baby sometime soon.    If she does what is required of her over the next few days, they will welcome Robin and I to stay in the hospital for 48 hours and take care of her ourselves in a our own room.  They do this so that we get comfortable with around the clock care, and so we learn to use the monitors she will be going home with.  

Baby's to do list - pass car seat test, eat more, gain more weight, and do the last two at the same time.  Easier said than done, but she has already done more than most babies twice her size, I've seen it.   ;)

So much to remember...

Ok folks, I feel like I am starting all of my posts with an apology owed for neglecting the blog and your needs for information about our precious baby.  The thing is, we have really settled into a routine with our odd lifestyle, and there has not been much time for me to update the blog when had the energy to do so.  Wake up, go to work, straight to hospital, get home around 930, eat dinner, and go to bed.  Not complaining about the routine, but it just has not left much time for reflection.

The last couple weeks have been pretty enjoyable, and wildly successful in terms of baby developments.  Robin is now going into the hospital before work for a feeding so she has that added task during her day on top of the pumping every 3 hours through the work day and night.  For both of us though, we have our favorite part of the day which for Robin is heading to the hospital in the mornings to start her day, and for me it is making the drive to the hospital.  I can't leave work fast enough. I know why my co-workers with kids are so happy to get home (most nights).  It is just completely bizarre that going to the hospital highlights our lives.  I am not sure how that has replaced drinking some beers or playing kickball with 'Menace 2 Sobriety', but it has.  That is probably because KelliAnne has changed so much and seems so healthy now. (I can't flip this pic over, feel free to either stand on your head or flip your screen)

You may not be able to see the number on that scale, but it says 4 lb 1 oz.  KelliAnne has packed on the weight the last couple weeks.  She has really picked up her ability to nurse, and they have continued to increase her tube feedings.  She has exceeded our expectations, and the doctors as well.  

Best Father's Day gift ever... here are some pics to prove it

 She is awake and alert more than she has been and loves to just stare at us.

<<< Best picture ever.  If you can call a preemie perfect, then I just did.

These pictures were after we gave her a bath, which she loved.  She is wrapped up to get warm and toasty again.

33 Weeks

KelliAnne has continued to progress as the doctors have expected.  She is pooping like a baby, eating a full ounce every feeding now, and has become quite vocal and demanding when she wants (or doesn't want something).

The doctors told us early this week that everything is going very great, except for being slightly anemic, which is very common for a baby her age, and they need to see more weight gain.  KelliAnne started the week at 2lb 14oz, only 10oz over her birth weight.  They expect her to be gaining about 25g per day on average, we were not quite at that.  She was listening and turned on the weight gain nearly every day, and as of the evening of 6/16 she was up to 3lb 6oz!  She gained over an ounce per day average, and it shows.  She is starting to look so big and healthy to us even, and we see her every day.

Now she needs to start producing more mature red blood cells and getting her iron levels up on her own, otherwise a blood transfusion could be in her future.  Keep your thoughts on KelliAnne Wed morning as she gets tested for red blood count again.

The most fun part of this week was the eye exam on Wednesday.  I worked from the hospital so I could be there to help her stay a little calm, because they told us that the babies do not appreciate stuff shoved in their eye.  The doctors were looking to see how her eye is maturing.  Since babies eyes are one of the last parts to develop since they don't freaking need them at this point usually, they can sometimes stop developing, and the blood vessels may just stop growing that connect their retinas to the back of the eye.  They checked them out, pissed her off, and then I held her for a couple hours and she was all good.  Her eyes are about where they would expect, so we get to do the same thing the next two weeks to make sure all continues as planned.

Especially with returning to work, we treasure each time we get to spend with KelliAnne and we have captured some great moments from the last week we will share here.

Back to Work

We had an interesting and hectic week returning back to our jobs and life away from the home and hospital. I returned to work on Monday, and Robin went back to work on Wednesday.  Robin returned to work exactly 4 weeks after the baby was born.... after a wickedly fast and rough c-section.  The woman is a superhero.  She did this so she will have plenty of time to continue the bonding and help welcome home KelliAnne when she is able to leave the hospital.  Without doing this, her FMLA time would have been exhausted most likely before baby girl even left the hospital.

Anyway, it was a week full of rapid clean up around the house, and prep to even be ready to go back to work.  Cleaning out emails for me, and for Robin, preparing mentally for a new job (same company, new role).  This also entailed Robin refining her wardrobe.  I don't think she found that to be very fun, but she was absolutely beautiful for her first few days back in the office.  It was the first time she had really had to get up and get dressed nice, put on make up for quite some time considering she had been on bed rest prior to the baby coming.  She looked great, had a pretty good week getting to know her boss and some co-workers.

Leaving for work for me on Monday, and Wednesday for Robin, was a daunting task as we both have become so accustomed to sitting near KelliAnne's incubator for so long, and watching her monitors.  We have also enjoyed getting her out every three hours for feedings, diaper and kangaroo care.  We will not be there for as much of that going forward, but we were able to hustle out of work every night and get to the hospital by 5PM for her feeding and time to be awake and visit with us.

I think KelliAnne knew we returning to work this week, so she made it a little easier.  Her bradychardia has decreased to just 5 or 6 episodes per day, which is lower than you would expect for a baby her age.  She has not desaturated in over a week now.  I mentioned last week the nasal prongs came out, so no more assistance to breathe.  She went 7 full days without desatting so they are no longer monitoring her oxygen saturation levels.  All good stuff and steps in the right direction.

We met with a massage therapist this week who has trained us in massaging KelliAnne's hands, feet, and head.  She really liked it and fell asleep every time we have done it.  Here are some pictures of the massage.

The herd is moving...

When babies in the NICU are doing very well and reach a status where they are very stable and just need to grow and wait to mature before they can go home, they often move to the 'Grower/Feeder' room.  It sounds like we are referring to cattle or some kind of livestock, but in seriousness, this is a very good sign of a baby getting healthy.  This move also frees up bed space for sicker and newer babies that are just born or transferred to Saint Luke's on the Plaza, which is a referral center for high risk pregnancies in a 100 mile radius.

This move was made by KelliAnne yesterday.  She is in the old NICU at Saint Luke's now that does not have all the bells and whistles because she does not currently need them.  We are happy to accommodate new parents and their sick babies because in our opinion the more room at Saint Luke's on the Plaza means a better chance at a good start for a preemie.  They are nothing short of miracle workers and it is clear that everyone that works there has been called to do that specific job.

The nurses did caution us that many times babies for whatever reason may take a step back to the main NICU, but we are knocking on wood, and continuing to pray that she can stay here until our calf can move home.

Rookie Parents and frozen yogurt...

The last few days have been very good for KelliAnne.  She had a couple days where she lost weight but that had to do with her getting 'unclogged' a bit. She had not been going '# 2" as frequently as she should so the doctors checked her out.  They found quite a bit of air in her belly, which was good, because the alternative they were worried about was some sort of infection to her stomach and intestines that would have been very bad.  The other good part about a bunch of air in her belly, is they have ways to get this out.  It's called a suppository.  This helped get things moving for KelliAnne and resulted in a sligh weight loss over two days.  No worries though she gained it back, and is actually up to 2 lb 14 oz.  Almost  3 lb now, which will be a big milestone.  The nurses have told us once babies hit that weight she should really start gaining regularly.

The other interesting part about a suppository is the amount of garbage that can be produced by this little baby.  Yesterday, Robin and I were tag team changing a diaper, as it is pretty tough through the holes of the incubator.  KelliAnne had an average size stool.  Robin got her cleaned up and had a new diaper already underneath the dirty one so we could just pull it out and strap on the new one.  We proceed, and KelliAnne proceeds to fill the new diaper like someone had just flipped the handle on a frozen yogurt machine.  She then filled covered a little towel and another diaper.  Robin and I were impressed and laughing hysterically.  This was one of our finer moments as new parents, and the most we had laughed in quite some time.....  The nurses got a kick out of us as well and let us know what we have in store for our future.

Oh yea... we also managed to keep the incubator and all the bed covers clean somehow with all this, and KelliAnne took notice.  Once we had all the poo cleaned up, KelliAnne decided to pee straight into the air when Robin was scooting diaper # 3 under her.  This got her monitor leads, the bed, the 3rd diaper and her snuggle up bed cover dirty.  We tried.

New pics from week 30

https://picasaweb.google.com/116053787981267429805/PicsFromWeek30?authuser=0&authkey=Gv1sRgCIS3o_ipxOHcQQ&feat=directlink



Here is a link to another slideshow of KelliAnne.

Week 31 Update

Ok, so sorry for the delay in posting, but we have been waiting for some results of a brain scan on KelliAnne before we wanted to post news of tons of positive steps she has made in the last week.  We have nothing but good news this week, starting with the brain scan.  KelliAnne had a brain ultrasound on the 23rd that showed she had a slight hemorrhage in her ventricles.  I can't remember all the technical details of this, but the doctors actually were quite positive about this, telling us it is very common for a baby born this early.  They advised that instead of having a 1 month follow-up scan, that she would need one the following week (May 30).  That day was Wednesday, until they literally forgot to do it (good sign they weren't too worried).  They finally got around to the scan on Friday and it showed the swelling from the hemorrhage was decreasing as they hoped.  There was a big sigh of relief from all of us that were waiting as this was the only thing going that was not extremely great and ahead of the game.  So on to that news.

This little baby continues to amaze us with her strength.  On her 30 week update I mentioned she was back to her birth weight of 2 lb 4 oz.  As of her 31 week (yesterday) she had gained 8 oz and is up to 2 lb 12 oz.  We leave the hospital each night around 7 or so and call in about 1030 before we go to bed for updates on her new weight and each night this week they kept giving us the great news.  The reason for this is she is handling her feedings (still through a feeding tube) and they continued to increase by 1 mL every 12 hours.  She is now getting 22 mL fortified with 4 extra calories, every 3 hours.  This is actually enough to give her a very full belly and make her sleep 'like a baby'.  They will continue to increase the feeding going forward based on her weight gain and ability to digest without issues.

I mentioned the brady's (b's) before, and those have really slowed down, likely because they figured out her caffeine dosage.  She has a few per day, but that is all normal stuff.  She has them when she is either very sound asleep or when she has a Desat (further known as d's).  A desat is when her oxygen saturation dips below a targeted range.  She is having these when she gets a really full belly because it is so hard to take a big breath!  They are not worried, so we are learning not to worry.

Other great news:  Her PICC line was removed.  The PICC is a central IV that was providing her nutrition, but it is no longer needed because she is getting all she needs from the milk her mama is working hard to produce.

She is also now off temp control.  We will see how she does with that, but that means she gets to start wearing clothes which makes Robin, the grandmas, and aunts very happy.  Luckily, Robin had a shower this weekend with tons of good friends and family that netted lots of baby clothes that we have already cleaned (thanks Grandma Judy) and delivered to KelliAnne's nurses to dress her.

When we get some time, we will add more pics that were taken over the weekend.  She continues to look more and more like a baby we are used to seeing.  She just looks healthier every day and we love every minute we get to spend with her.

Hard as a Rock

=Tom

I was thinking about just putting his name here to get the point across regarding how strong Tom has been. However, he deserves more credit for how amazing he has been...more then I could ever give him.

-While in the hospital, almost every night nurse commented on our team work with the three hour pumpings. How great it was that Tom was up with me, cleaning the bottles every time, and then walking them down to the NICU.

-I cannot imagine how scary the first few hours of Miss KelliAnne's life were and Tom handled it like a champ. He did not leave her side and absorbed so much information from the doctors that I felt like I had not missed a beat when I was finally able to go and see her. I could not imagine going through this adventure with anyone else then my Rock, Tom

OK, enough with the mushy stuff!

In an earlier post Tom commented on how great Farmers has been. I need to second that with  my employer, Cerner. From day one (way back in April when bedrest began) my leadership team has been amazing and more then understanding. Their number one focus has been me and our baby, no worries about work. We are very blessed to not have to add work stress to our plate!

Stuff still going pretty well with KelliAnne...

The doctor just called us as we were headed out the door to go back to the hospital and gave us the morning update.  KelliAnne has gained another 20 grams, which puts her at 110 grams gained in the last 5 days. That is really good.  She is now up to 2 lb 6 oz.  She has tolerated room air (21% O2) coming through the canula at the lowest level possible, and they increased her caffeine (keeps her from deep deep sleep where she will forget to breathe), and her brady's decreased to only 14 over the last 24 hours.  Seems high to me when we are talking about the number of times your heart rate dips dangerously low, however, they said if she was not having them at this gestational age, that would be really weird.

If the doctors are encouraged, we will be as well.

In the next 24 to 48 hours they will be testing KelliAnne off of the canula altogether and just let her breathe regular room air like you and I without assistance.

A few good pictures showing how much she has changed

We love this picture of KelliAnne.  We are not supposed to use flash photography because it can stress out little babies, but I accidentally did in this one, and it turned out great.  She just looks like a little baby now.  She seems to be OK with the camera as well.

Here was another picture we really like. She was waving goodbye to us before we left the other night.

.. and this one.  This was a preemie hat, that is still clearly way to big.  I can't decide if she looks like Bob Marley or a chef.  Either way, she has options.

30 weeks today...

KelliAnne hit her 30 week gestation today. That is adjusted given she is not in utero but nonetheless, she is there. We also had good news getting into the hospital earlier today . Her billirubin level was low enough to take her off the lights. I am sure you noticed in the pictures a blue light on her. That business is done, as long as she keeps pooping. Apparently that is how she expels the billirubin. The other good news is that she has gained some weight and she is actually back above her birth weight. She is still in the 2 lb 4 oz range, but all the way up to 1030 grams. She was born at 1010 grams. She has gained over 2 oz in the last two days. That is because she has handled her milk well allowing the doctors to increase her feedings. She is all the way up to 7 mL of milk every three hours and she has steadily increased every 12 hours. She could be close to a full oz in the next couple weeks at this rate which should help add to her daily calorie intake.

New Stuff about Preemies we learned

We have been learning quite a bit about the challenges that a baby born this premature faces on a daily basis.  They have little hands, feet, arms, legs, hearts, and if that is not enough, little brains.  The reason is that some major parts of their brain are not yet developed and were not in the plans until around 36 - 37 weeks.  Many of these developments are related to the nervous system.  Our nurse explained this like a contract that a baby had, and when they are born early we have 'renegotiated' the terms.  When they come out early they have some side effects (clearly) because of this.  Here are a couple:

One of the side effects of 'life on the outside' for a baby is that they are used to a tight and confined space with little room to move around.  Now they are in a big area and are not squeezed and they will lift and flail their arms and legs quite a bit.  This is a sign of stress for a preemie.  You want to see them laying with their arms and legs in tight to their bodies, still in the fetal position. Because of that we do a lot of hand containment to make them feel that confinement, we also have pillows and stuff all around her to make her feel there are still some walls around her.  When she breaks free of the pillows, we try to get our hands on her as fast as we can.

The other effect of her new living arrangements is pretty major.  Babies don't breathe in the womb and aren't asked to do so until about 40 weeks.  KelliAnne is breathing room air with a tiny bit of help from a some air into her nose.  I think she is doing pretty good considering, however, this exerts a lot of energy which makes it tough for her to gain weight.  Her body would be using that energy to grow if still in the womb.  The other issue is that the part of her brain that tells her to breathe consistently is not fully developed.  No big deal though, she alarms herself, her parents, and the nurse with bradycardia.  This started yesterday when her heart rate just dropped from the 150s (normal for a baby her age) into the 60s.  Apparently this is normal until her brain development catches up with her required activity of breathing.  Luckily she is strong enough to recover and basically wake up immediately and has not yet required the assistance of the nurses.  We are told by fellow NICU parents that we can expect some of that in the future, it just happens, but for now to enjoy how she is bringing her heart rate back up on her own.  They increased the air pressure on her O2 flow today, which is nothing major as she is still breathing on her own.

It is best to not watch the monitors.... we are still learning.

KelliAnne Race Slideshow

https://picasaweb.google.com/116053787981267429805/KelliAnneRaceSlideshow?authuser=0&authkey=Gv1sRgCIjUxuWgmJHYrQE&feat=directlink