How Preemie Moms Are Chosen

Another friend of ours who also had a preemie posted this on her blog. I just had to share.........

Courtesy of Erma Bombeck...

How Preemie Moms Are Chosen
(Adapted from Erma Bombeck)
Did you ever wonder how the mothers of premature babies are chosen? Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Beth Armstrong, son. Patron Saint, Matthew. Marjorie Forrest, daughter. Patron Saint, Celia. Carrie Rutledge, twins. Patron Saint ... give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles. "Give her a preemie."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.  God smiles.

"A mirror will suffice."

6 Months and Counting!

Our Miss KelliAnne is six months (well, officially she will be on Friday 11/16) already! It seems that every day she is doing something new that makes us smile and truly amazes us.

A couple updates since our last post :)

-KelliAnne had her final weekly eye appointment with the Retinopathly specialists with Children's Mercy. The abnormal vessel growth, which was discovered shortly after birth has cleared up on its own. This is great news, considering I (the momma) could no longer take her to the appointments without crying. Watching someone hold your baby down while they pryed and held their eye open with a speculum was no bueno. She screamed...a lot. Plus this means no eye surgery and her eyes should develop as normal. Great news all around!

-Double digits! That's right, KA is tipping the scale in the double digits these days. She is about 12 1/2 pounds and is getting pretty chubby. We enjoy finding new fat rolls and actually having a bum to clean when she has a dirty diaper

-RSV Season is in full swing. It is respiratory virus that nearly every baby will get before the age of two. In most cases, it presents itself as a bad cold. With preemies, it often lands them back in the hospital and they are very susceptible to getting it. Due to KelliAnne's birth weight and gestational age at birth, she qualifies for a monthly RSV vaccination. She will get one every month through March. The best defense to keep her healthy through this season is to keep her away from crowded places and little kids. Unfortunately, this means operation lock down is in full swing. We are getting quite used to the lovely four walls of our house. We welcome any visitors that come in perfect health, and unfortunately, no small children. It is going to be a long winter, but so worth it to keep her healthy and OUT of the hospital. We made a deal that she is not going back there :)

-We had our 6 month development check at The Children's Spot this afternoon. We met with a physical and speech therapist. She met all of the developmental goals they had for her, which are those of a three month old. Remember, we have to use her adjusted age which is how old she is based on her August 3rd due date. She passed with flying colors and they were thrilled with how she is doing. They did not see any red flags or items that need to be followed up on. Big sigh of relief! We have a follow up again in three months to make sure she continues down the right path

Here are a few pictures from the last month or so. Enjoy! And as always, thank you everyone for all of the nice thoughts and prayers. They go such a long way and are appreciated more than you will ever know.

Catching up.... again

Good evening folks,

KelliAnne has now officially been out of the hospital for three whole months!  She is creeping up on being 5 months old and 10 lbs.  If you saw her today, you would think she was born a few weeks ago healthy as can be.  Fat cheeks, leg fat rolls, a giggle and curious personality that makes us think she is going to be a talker in just a few months.

KelliAnne has really enjoyed the start to football season even though every team she cares about seems to disappoint at every corner.  OK, so she really doesn't care, but she may be helping her Father become a little less temperamental on game day, which was probably needed.  I am not saying that Tom doesn't get fired up, but when she is sitting on his lap watching the game, he can't really jump up and kick something like he has done in the past.  He won't admit such behavior ever took place.

This little girl has learned to value her sleep, and let's us know when she is rested by being at her happiest when she wakes from a long nap or full night's rest.  A full night of sleep for her is not what Mom and Dad were accustomed to, but we are happily adjusted to a 3 or 4 AM wake up call to the happiest baby in town.

Anyway, the last couple months have brought us a new change nearly every week.  KelliAnne had her four month check up recently and the doctor was thrilled with her! She is hittig all but one of her four month milestones...and she is only supposed to be hitting those of a six week old.

Enjoy some pictures from the last few weeks.

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

The weekend and leaving the hospital...

Over the weekend Robin received tons of flowers and gifts from our friends and family, including lots of pink clothing.  We really didn't have any clothing for KelliAnne other than some gender neutral stuff.  Robin kind of anticipated on handling that later, as well as getting some stuff at showers and what not.  The St. Louis shower was cancelled while Robin was on bedrest, and I believe will take place some time later in the fall.

KelliAnne did great over the weekend, and she began to move around more and more.  We became more comfortable with the hand containment and learned more ways on how we can express ourselves to the baby through touch and sound.  We also started reviewing the info they gave us explaining the developmental benefits to this interaction.  It is remarkable how big of an impact it can have.

The nurses' job is not only to care for KelliAnne, but to make sure we are part of the care they give her as it is part of the bonding with parents.  They want us fully prepared to leave their NICU and take care of her like she was a term baby that had no health issues.  We are just trying to soak it all up.  On Saturday they had us changing diapers, checking temps, and learning how to help control the temp of the isolette.  They also asked us to be vocal with the nurses regarding care for KelliAnne.  The nurses are on shifts and change out frequently so we will actually start picking up many clues to what she needs that they are not familiar with.  One such clue that we advised our Sunday nurse was that she has better stats when laying on her right side, so she rotated her. The reason was supported by the x-ray that showed her left lung was still not inflating all the way.  We knew this but the new nurse did not, so they actually listened to us and let us feel more involved.

Later in the day on Sunday, we left the hospital. They kept Robin there an extra day longer than the normal c-section because we had the baby staying behind.  Next to seeing how lifeless and sick KelliAnne was on her first day of life, this was extremely tough.  The baby was supposed to come home with us in our plan.  We headed home where Robin's parents and my mom were waiting to help us get settled.  Robin's mom found our cleaning supplies and restored our home to a condition we had not seen it in for quite some time.  We were stunned at how clean everything was.  It was one less thing to worry about.

We were back at the hospital within a couple hours and stayed there until late that night.

Friday.... big day

On Friday, KelliAnne had remained stable and was actually taken off the respirator on put on SEAPAP.  She handled this like a champ, likely due to the steroid shot she received for lung development nearly a month prior while we were in the hospital in Springfield.  That turned out to be a very big deal potentially as she was breathing better than many '28 weekers'.

She also began her trophic feedings by a feeding tube directly into her belly and had no resistance.  5 days of this are needed before they can begin to increase her food intake by 1 mL every 12 hours if handling it well.  They will do this until she is receiving a normal serving of breast mile with each feeding, while decreasing food delivered by IV.  Her dependency on the breast mile and acceptance of it, will be a huge factor going forward as it has developmental nutrients you can't duplicate artificially.  I have done the research on this... it's true.

I have focused mainly on the development on KelliAnne so far, but while this is going on, Robin and I have pretty much just sat in the chairs near her isolette and watched her, done some hand containment, and read to her as much as possible.  Thanks to my sisters from bringing us lots of books to read to KelliAnne.

We have also tried to catch up on sleep.  Robin has a better excuse than I considering she had major surgery just two days ago.  I just don't sleep well any more.  Robin also is awake every 3 hours to get 'milked' as well so no real continuity in our napping any more.  That is preparing us for when baby comes home!

Day 2

Day 2 in the NICU had a lot less drama.  Robin was feeling better, the baby was wiggling around and acting more like she should, so we were starting to settle in to what things are going to be like for us until KelliAnne can go home.  She had some issues with acid in her blood that they were working on the day before, and the medicine they were giving her actually got the acid levels back into an acceptable range by the end of day 2 (May 17th).  She was showing signs that her lungs were also in better condition as they were able to reduce the usage of the respirator and let her pick up some of the slack.  Much of this day was spent by me asking tons of questions regarding all of the numbers on the monitors, learning what ranges we wanted to see them in, and we also spent a lot of time doing the hand containment.

They explained to us certain milestones they want to see out of KelliAnne to be demonstrating progress.  First, less dependent on the respirator so they can work her up to a SEAPAP machine (exactly like what people use for snoring or sleep apnea), then a canula (not sure on spelling).  Other movement they wanted to see was a couple days of stability in her other organs (heart, brain, liver, kidneys) before they would start feeding her.  Day 2 went well for this category, so she was getting closer to receiving trophic feedings.  1 mL of breast mile every 3 hours.  Trophic feedings are to coat the stomach and let the antibodies from Robin help protect the baby from infection.

I am not a real doctor, but I could play one on TV at this point.

Milk Man

Robin also started to make milk or 'colostrum' for the baby late on day one that we would deliver to the NICU every 3 hours and they would store in their freezers.  When Robin's nurse saw how successful this was so early she explained to us how good this will be for a 'preemie' baby to grow and develop faster and if we have milk sooner than later, it only helps.  She had Robin pumping milk every three hours, and I delivered it to the NICU throughout our stay in the hospital.  On the first night especially, I would deliver the milk and then spend time with the baby hoping to see her move.  At 3 AM on KelliAnne's first night, she started twitching and moving her arms a little bit, and it appeared the effects of the magnesium that had sidelined mom for most of the first day were wearing off of KelliAnne as well.

It was 3 AM so when I started to celebrate in the NICU, I was pretty much all alone but I didn't care.

Magged Up

The baby was born at 8:03 AM and by  noon, mom was awake enough in the recovery room to get wheeled in for her first look at our baby.  Just a couple minutes before that I went to the recovery room and discussed finalizing a name with Robin.  We had two names ready for a girl, and I had become tired with continuing to call our daughter 'it', 'baby girl' or 'baby Race'.  We decided on KelliAnne.  Thanks to the magnesium, Robin did not remember this until we discussed again later.  Luckily for me, I proceed with sharing this info with everyone and Robin still liked the name when she was more coherent later on.

The baby was also pretty magged up according to the nurses, which explained why they were not  seeing much movement from her.  Throughout the entire first 19 hours of KelliAnne's life, I talked to her and tried to get her to move.  I was convinced her eyes moved more when I spoke to her.  The nurses told me she probably recognizes my voice and that it would be important to talk to her as much as possible, as well as do 'hand containment' so she can learn my smell.  Hand containment is a way to hold a baby that you can not actually lift out of the isollete by putting pressure on their hands, legs, head or bum to make them feel secure and like they are still in a tight womb.

Robin was pretty out of it all day and in too much pain to really visit much that day, but did manage 1 more quick trip to see the baby when she was really coherent later that first day.  Robin forced herself through some pain to sit up in a wheel chair just several hours after a major surgery so she could 'hold' her baby the first time.  Mom didn't mind much that the baby could not move, just really felt the connection being with her.

Cathy... our 2nd Angel

In the NICU I quicly met Cathy, our first nurse.  She was assigned to 'baby girl' for the day.  That is what they were calling her because Robin and I had not yet decided on a name.  Cathy was intense and nice, and kept me informed her entire shift.  'Baby Girl Race' had a very tough day one, but Cathy never left her side, except to literally jog to the restroom if needed.  She refused lunch when the other nurses offered to take over.  This was the start of the amazing care the NICU has provided for us and our daughter.

She spent the entire shift getting her hooked up to the right machines, making sure they were working properly and adjusting as needed based on the baby's reactions.  There was no movement from our baby the entire day other than breathing and slight eye flutters.

Remembering the 'Hail Mary'

Within a few minutes Robin's team of doctors at this point were running into the room, because the baby had fallen off of the monitor.  They advised that an emergent C-section was necessary and that they would need to put Robin under, so I would not able to join them in the room.  They had her wheeled out of the room and toward the OR before I could really think of any questions.  They didn't have time to answer them though any way.

The plan that Louise had presented the night before was not going as she thought because they had Robin moved out so fast that they did not remember to have someone take me to the NICU to wait for my new baby.  I stood in the hallway outside the OR until what had to be the only nurse not involved in Robin's c-section saw me and asked if she could help me.  I just let her know my wife was in surgery and I don't know what I am supposed to do now, but I wanted to be wherever the baby would be asap.  She took me back to the room we stayed the night in and said that she would have someone come in there shortly to get me over to the NICU.

I sat there and waited and tried to pray the rosary.  I could not remember all the words to the 'Hail Mary' so I said a different version of it through the first half until I finally figured it out.  About then, Louise walked in.... with the news.  She explained why everthing moved so fast, and that within 1 minute of Robin being put to sleep, they had our baby girl out.  She did not have a heart beat and was not breathing, but they quickly got her breathing, stabilized, and she was on her way to the NICU.  We had a baby girl and that is how I found out.  Louise did not know this was a surprise, and almost lost it as well when she saw my reaction.  

At this time, though, I remembered our ultrasound tech from the day before that put her lunch off to see Robin.... we have angels.

She took me to the NICU where I was waiting when our baby girl was brought in to her temporary home.

Preparing.... in case this baby comes

I will backtrack briefly to the first night in the hospital.  The doctors advised they would have someone from the NICU come speak to us about what to expect should we have the baby early.  A NP named Louise came in at nearly 10PM and went through a ton of information that had us spinning. The info included where I would be during delivery (if needed) and where the baby would go, when we would see it, and what to expect the baby to look like.  This also added to our anxiety going to bed.

The next morning we woke up about 6AM when a nurse came in to check Robin's vitals.  She said the baby looked pretty good through the night and the contractions had spread out and become less intense. All good news.  She left us to catch up on sleep as we did not get much through the night.  About 45 min later a couple nurses came in and said that the baby was experiencing more dips on the monitor and that the doctor would be coming in.  The doctor came in and said they are keeping a close eye on it and that they would also get their 'high risk' doctor involved.  20 minutes later someone from anesthesiology came in and asked questions regarding previous surgery and allergies and said they were preparing 'just in case'.

Within the next 30 minutes, 'just in case' became reality....

Let's keep Robin pregnant...

When we arrived at Saint Luke's they explained to Robin their goal would be to keep Robin pregnant as long as possible, even if she was there in the hospital until she reached 34 weeks gestation.  They would do this by limiting her movement... i.e. super-strict bed rest as well as continue to monitor the baby and pump Robin with more magnesium to keep the contractions spread out.

We settled in, not knowing what to expect, but we felt good about 1) being in the hospital in our hometown (unlike Springfield), and 2) Saint Luke's has a great NICU in case we did have our baby early.

Robin's parents came in from Saint Charles this night and visited us along with my parents and sisters.  Everyone went to bed that night hoping we could keep that baby in Robin a while longer.  Robin and I didn't sleep much, just watching the monitors as we could see when she had contractions, and we could also see that the contractions would decrease the baby's heart rate considerably each time they came.  The doctors said that this was likely putting pressure on the baby's cord causing the slight dips, but as long as they come back up, we are all good...

May 15, 2012

Fast forward a few weeks....  Robin was on bed rest for about 3 weeks and had a very calm go of it.  I was able to work from home as much as needed to help her out and make sure Mom was not up and moving around more than necessary.  My job was awesome at letting me work virtual and my team, boss, and other supervisors really picked me up during this time.

On Tues, May 15 Robin was scheduled for a routine visit (she now had weekly check ups on the baby due to the bed rest) to check on the baby's heart rate, growth, amount of fluid etc...  Luckily we showed up to this appointment about 30 minutes early as we were already in the building for another doctor appt.  By strange luck, the ultrasound tech decided to go ahead and get our imaging started and forego her lunch break.  This may have been the biggest sign that God was looking out for us as things were not so great, and every minute counted to help out KelliAnne.

Robin had virtually no amniotic fluid left, but she had also not felt her water break.  The tech also noticed the baby was really not moving that much.  Her heart rate was fine, but the tech immediately contacted a doctor who had us rush over to labor and delivery.  Over at L&D, they let us know that Robin's water had broken, and she was experiencing mild contractions and had started to 'labor'.  Robin couldn't feel a single contraction, but nonetheless, they immediately started her on Magnesium to help reduce the stress on her uterus, stopping the contractions.  They also informed us that they needed to get Robin stable enough to transport by ambulance to Saint Lukes on the Plaza as she was likely going to deliver the baby very soon.

This did not cause panic for us because the doctor took her time to explain why/how things would end up better for the baby (still unknown gender at this time), but she also shared some risks and things to expect with a 28 week baby.  About an hour later, Robin was on an ambulance on her way to Saint Lukes on the Plaza.  I met her there....  Luckily my parents had arrived in time to drive me down there as I was not in great condition.

In the beginning...

Let's have a start from the beginning... before KelliAnne joined us in the real world.  Robin had some complications during her pregnancy that caused her to be on bed rest starting in late April.  Bed rest stemmed from a trip to the hospital while we were on a 'Babymoon' at Table Rock Lake.  We spent four days at Cox South in Springfield and that is when the good care of KelliAnne by professionals (on top of her mama) began.  The nurses and doctors in their Perinatal Care Unit were outstanding.  Even when there were nothing but question marks as to what was going on, they made us feel comfortable and confident in a good outcome.  Unfortunately, they did not have much of an idea about what caused our need to visit their hospital, but when they were confident that Robin and the baby were stable they sent us home with a map and list of every hospital between Springfield and KC.  That was a nerve wracking drive home, but we made it safely.... with tons of flowers that had been sent to Robin while in the hospital (thank you to all who sent us flowers and gifts).  Also, a thank you to everyone that thought and prayed for us during the 'scare' we had back in April.