Things 1, 2, and 3...

July 26, 2014:

Today was the big gender reveal day.  Not that we are one of "those" people who have a special cake made, or have a party, but we did have an ultrasound done to check on the babies...yes, I did say babies.  My denial phase is still intact, and every visit to the OB or ultrasound, I am sure something is going to change, but not as of yet.  In fact, the last OB appointment, my doctor said, "you may want to begin accepting the fact that there are 2 babies...." So, I am working on that.

The twins are sitting "head to head"

Etta was a little less than patient during the scan, but Spencer did manage to at least keep her in the room without too much screaming, with the help of her favorite snack, red grapes.  This scan really helped me begin to accept that I really would have 3 kids under 3, and possibly 3 kids under 2, depending on when they would be born.  The stenographer painstakingly scanned each limb, internal organ, and couldn't find a defect in either baby.  I guess I have just seen too much in working at Primary Children's Hospital to automatically show optimism.  I seem to always remember the critically ill patients, and not the ones that did recover.  Anyway, this scan helped put my mind at ease a bit, except for the fact that we will be having 3 GIRLS!

Twin A:  Never stopped moving during the scan, and even "waved" to us.

Twin B:  A little less excited to meet the camera, and sat mostly still until she startled when hearing her own heartbeat and turned away.   

Etta helped us announce our pregnancy with her "Thing 1" shirt:

Perhaps you've heard rumors; and this one is true. That soon we will have a Thing 1 and Thing 2. But, wait just a minute, what's that we see? Not only Thing 2, but also a Thing 3!!

It worked!

May 4, 2014:

Today was the day that I got the call from fertility clinic...not the one I typically expect of "well, we will try again next cycle," but "It worked!  You are pregnant."  They also said that my HCG levels were very elevated, about 850 above the normal pregnancy number, so I would need to schedule an early ultrasound to make sure everything was OK.  They also said it "could mean multiples...."  The pregnancy news was met with excitement, but also some pretty strong reservations.  As we were beginning treatments again, my sister, Whitney, had her baby Jude after only 5 months of "cooking," and I was nervous for that possibility, as well as handling pregnancy with a spunky 18 month old.  And then there was the possibility of more than one.  I had jokingly said many times that I would like to have more than one baby at once so I wouldn't have so many rounds of fertility treatments.  As this became more of a reality in my mind, I reasoned with myself that it was hard enough to get pregnant with one, that two or more was just out of the question.

But, I have long since realized that I don't typically get a say in these type of matters, so I decided to choose optimism (with just a little skepticism).  That was until the "morning" (or all day & night) sickness hit.  I was pretty sure I might die, or invert my stomach from so much vomiting.  But, I am here writing this, so it didn't happen.

Adding to the nausea and sickness, I went to my first 6 week ultrasound appointment.  I guess I am a little tainted when it comes to optimism about having kids, and am usually sure they will find something wrong.  The doctor began the ultrasound and had trouble finding anything.  He said a couple of times that he just couldn't see anything in my uterus.  I was sure this was the case, and began my grieving process on the exam table.  However, a couple of seconds later, he said "oh...what have we done here?"  Now, what is THAT supposed to mean?  He ended up finding two yolk sacks, and said the probability of twins was high, and he would consider me pregnant with twins at the moment.  He also cautioned us, saying that sometimes, even though there are two sacks, things don't turn out.  I was happy with possibility of even just one, and so my denial of two began...

Released!

Sunday morning, around 7 am, the surgeons came around for the usual rounds and said they were sure Etta was ready to go home.  She had slept very well through the night, barely waking up for her vital checks.  And to be honest, I was just as "out" that night.  Thanks to my Mom, I was able to sleep more soundly.  She selflessly offered to sleep at the hospital with us, so I could get more sleep.

We walked out of the hospital around 10 am.  I felt so excited to get her home and begin recovering where she could really heal.  We have been so blessed throughout this ordeal and have seen some amazing "tender mercies."

Etta continues to do well and is basically off her pain meds.  She is wanting to get back to her "life" and ate her first full serving of rice cereal today.  She also spent quite a lot of time in her Bumbo seat, actively playing with her toys.  I'm beginning to see glimpses of the fully healed Etta.  Keep those coming!!

And the poop came...

Hopefully, if you are reading this for the first time, you kinda know some background about my daughter, Etta, and her recent surgery to eliminate her Stoma, due to Heirshprung's Disease.  If not, the title of this entry is a little weird.  

Etta had a rough night, and seemed to be uncomfortable most of the night.  But I didn't think it was due to actual surgery pain, but her bowels beginning to wake up again and the trauma of taking a scalpel to guts.  So, I decided to hold her last night to help ease her discomfort.  It seemed to work, and she began burping and squirming.  After the surgery, we haven't been able to hold her much, as it seems to make her more uncomfortable.  

We were rewarded at 6:05 this morning, as I was nearing the end of my rope trying to comfort her hurting tummy with a bowel movement.  This step is huge in the process of healing from this surgery because it indicates the bowels have begun to heal and are ready to process food again.  :)

Although Etta has been cleared to take clear fluids every 3 hours, she is not interested in eating and promptly boycotts the idea by sealing her lips together a letting out her "warning" yell.  So, I have been warned, but will continue to encourage her to eat.  

Future in Medicine

After receiving the order that the Anderson tube could be removed (the tube going down Etta's nose and into her stomach to suction fluid), the nurse got her supplies ready, gloved up, and started to talk about how happy Etta would be when the tube was removed.  She warned us that Etta may hate her for a moment, but would be grateful to have the tube gone.  Admist this "boring" adult conversation, Etta literally take matters into her own hands, and snuck her right hand across her face, grabbed, and pulled.  Before we could react, Etta had removed her own Anderson tube.  And the nurse was right...she is much happier!!

The night I became "that Mom..."

This morning at 6 am, following a pretty dramatic blood draw, I began to realize I had turned the corner to becoming "that Mom..."
You know, the one that the nurses turn on their best "customer is right" smile and attitude in response to "Momma knows best."  When I worked at Primary Children's, I remember seeing Moms doing things that just seemed a bit "crazy."  One particular instance I remember was one of the sickest patients I ever got to help.  He needed quite a few interventions to breathe, and was not doing well.  I spent many sessions with this kid and Mom utilizing relaxation techniques for them both.  One day, I came in and she was standing bedside, straining her back and neck, tirelessly holding up his head.  She held this position for days.  I invited her several times to come and sit down, and she tersely replied, "No.  Can't you see this is helping him."  I thought, "Actually, no, can't you see that he breathes the same no matter his head position and you are adding undue stress to your back?"  Of course I DID NOT say that, but didn't really understand her "crazy" at that moment.  I am proud to say I now understand...
When your kid is hurting and there is absolutely nothing you can do, you begin to "find things" that you are ultimately sure make them more comfortable.  Although to the outside observer, these things make no difference, and honestly seem a little neurotic, it is our way of coping with being unable to take away the pain and discomfort.  So we pretend that our crazy little measures of comfort are of medical necessity...things like blanket position, length of time the mobile plays, the dimness of the lights, how loud your husband is watch TV, and many other small details.  And you better be on the lookout if you happen to be the one who changes any of these things...Don't mess with my baby!

Recovering...

Etta's surgery was complete today around 1 pm.  The surgeon said everything went well, and she did well under anesthesia (one of my greatest concerns).  They called us twice during the process to let us know everything was on track and she was stable.  One of my strong points definitely IS NOT waiting...I would rather just ACT and get a move on things.  I guess I will learn someday....

Here we are waiting again.  She is very stable and we are "waiting" for her to become more alert.  However, this waiting I am more than OK to prolong.  The charge nurse working today said that this particular surgery is one of the more painful she sees, so if Etta is comfortable, I am too.

She officially has lost the "poop shoot," as Spencer has named it and has the incision to prove it.  Instead of being able to complete the surgery lapriscopically, they did have to open her stoma site for greater access to "pull down" the good intestine and connect it.  The surgeon seemed like this surgery was a walk in the park and very common, but it sure is a big deal to us!  Getting rid of the stoma is a great feeling.

After Surgery

It has been so nice to draw on connections with friends and family while here.  My sister, Whitney was working in the PACU today, and was able to see her right when she came out of surgery.  My niece, Nicole works on the unit she is staying on, and comes to see us regularly   Some of my old colleagues have stopped to say hello and offer support.  Overall, I think is doing well right now, her pain is being controlled, and she is sleeping peacefully.

My Kid Rocks!

So, I was super nervous checking in to the hospital for bowel prep...Etta just loves to eat, and wouldn't be allowed this luxury for at least 24 hours.  I can safely say she is the strongest, most tolerant, and of course, spunky kid I know.  She took most of the procedures in stride, and slept most of the night (unlike me).  She  is such a trooper. 

So, the poor thing had to endure 4 hours of being fed this Golytely stuff, through the above pictured NG tube, that cleans everything out within a matter of minutes.  Or more accurately, you think everything is cleaned out until it's not...anyway, she did this on top of being unable to eat, having vitals taken every couple of hours, and lots of unfamiliar people prodding and poking her.  She quickly learned that if she found the NG tube behind her ear, it was a lot of fun to try to pull out.  My time was spent trying to keep all tubes, IV's and monitors in place.

I swear sometimes babies can understand you...just after they placed her IV, and she wasn't done letting them know her feelings, I picked her up and said, "You tell them."  "Just give them a good kick..." She responded by replacing her screaming with laughing and we both "belly" laughed for a good couple of minutes.  The IV team said they had never seen such a reaction after placing an IV.  Leave it to my kid!

They took her to surgery around 8am, and just called with an update.  They are just biopsying the intestine to make sure she has the coveted nerve cells before re-attaching.  More to come...

Part 2

Just because I am horrible at blogging and don't make the time, I tend to only do it when something "big" is happening....so, the "big" event is Etta will be going to hospital tomorrow morning to begin preparations for her corrective surgery to eliminate the stoma.
Life with a stoma was incredibly overwhelming initially, and was the "main event" of the day-to-day functions of my life.  I literally had to plan her changes when I had help.  In the beginning, diaper changes could take up to 20 minutes and require 6 hands.  We have it down to a science now and both Spencer and I can somewhat handle things on our own.  It is a good time for the Stoma to go, however, as Etta is aware she has this bump on her side, and likes to pull on it...YIKES!
We really won't be mourning the passing of the Stoma phase, as we have learned they have a pretty awesome projectile power and cause some major skin breakdown issues.  We, are, however, somewhat hesitant to re-enter the hospital setting and see our baby incredibly uncomfortable again.
She will go in tomorrow for "bowel" prep, which basically can be translated to lots of fluids and none of which are Etta's coveted formula.  I think this is the part I am most nervous about for tomorrow, as those of you who know Etta can attest to her "love of the bottle."  She will also be receiving some pretty powerful laxatives, which will enable that awesome projectile power of the Stoma...her poor nurses.
Getting to this point has also been stressful because last minute, her surgeon's son died, leaving us with a later surgery date than desired.  Many of you have not met Etta, and us keeping her under house arrest the past 5 months was in preparation for this surgery date.  To have it moved back was not really an option.  SOOOO, I dug through my contacts at Primary Children's and begun the search for a new surgeon.  We found a specialist in "gut" disorders who actually had openings for the original surgery date of 5/15, so here we go!

To keep the ostomy bag on, they suggest adding heat...Etta sporting her heat-packed belly.

I will try to keep this blog as up to date as possible, and truly appreciate the support we have already been show through this stressful time.  Thank you!

Even Better…

12/19/12

We haven’t dared hope that Etta would be able to be home for Christmas; we didn’t want the disappointment.  We decided that New Years would be a “safer” timeline to expect.  It is so interesting how many ups and downs babies in the NICU can have.  One of Etta’s neighbors was told she could go home in two days.  She caught a respiratory infection and had to postpone her discharge by at least 2 weeks and is still working on getting better.  Many other babies have done similar things, “crashing” right before discharge.  You just never know how things will go…

But this morning promptly at 7:45 the rounding neonatologist called me to talk about discharging Etta Thursday, December 20^th, pending her completion of 24 hours of taking full feedings.  So exciting!!  So I am here at the hospital today and requested the nurses let me take full care of her for the day to make sure I am comfortable.  They just came over and offered me a room to stay here for the night...l think they like it when I do their job!  Etta has done very well today.  She has taken more than the required amount of milk for every feeding and I have some idea what it will be like to take care of a 2 week old baby.  It is 4:30 and I am about spent!  I got to change her Ostomy bag, get her dressed, feed her all feedings, change all diapers, and rock her to sleep for naps.  Although it has been a lot of work and exhausting, I wouldn’t have it any other way.  Now, just to remember how grateful I am for these opportunities when we are awake most of night…I guess that’s why I’m writing this down.  

Reality Bites

12/17/12

It is a common reality that kids get sick...even while in the NICU it is possible for kids to get common childhood illnesses.  Things were going very well after surgery and Etta was content.  She was eating fairly well and progressing toward going home until the addition on Thrush.  Her nurse noticed that she was having issues eating an entire bottle and was more fussy than usual.  While screaming in protest to basically every aspect of the day, her nurse noticed white spots in her mouth and cheeks.  She began a regiment of anti-fungal cream immediately, but continued to struggle eating and was very vocal with her discomfort.

Meanwhile, Spencer and I attended a class at Primary Children's Medical Center on Stoma care.  Man, am I happy to be taking care of a small, cute little Stoma....we saw the size of some adult Stomas and, I'm not going to lie, were appalled at the baseball sized site.  Although it may sound a bit discusting to think of the intricate details of a Stoma, we will just be glad to get her home.

While we were attending the class, Etta efficiently boycotted sleeping from 2am-3pm, keeping the nurses on their toes with incessant screaming.  It is these types of days that can drive parents to the crazy house...not only do you hear your baby screaming, but the vitals monitors are constantly ringing and beeping because her heart rate and respiratory rate is too high. When you go home at night, the silence of the house is somewhat of a welcome relief.  Here's hoping for a better day tomorrow...

Looking Better…

12/18/12

After a really rough day, I was almost afraid to call the nurse to check on Etta.  It is so hard to hear when she has had a rough time.  Since I have become nocturnal well before bringing the baby home because I am pumping milk for her, I usually call during the night.  Her night nurse stated that she had taken all her fluids orally and was calm.  Such a relief!! 

When we went to visit her in the morning, we found her wide awake seemingly waiting for us to feed her.  Her feeding went well today and she successfully nursed, as well as took a supplemental bottle of breast milk.  Spencer feeds her the bottle and she just kept wanting more.  She ate almost 3 oz in one setting.  It’s amazing how a good day can really brighten the week.

She officially has grown a mullet

Steps forward

After such a trying day on Monday, we were somewhat hesitant to go back to hospital the next day.  Dr. Downey did elude to doing surgery today, so we were both nervous for that and excited.  After speaking with him, we found out that the pathology reports were not ready yet and surgery could not happen until they were 100%.  This was frustrating, but he also ordered that Etta's suction tube be removed and she begin eating until her surgery took place.  Although  we felt progress was stunted because the surgery was delayed, we were excited to hear that we could feed her.

Spencer began her first feeding, and she seemed a little bit confused because this was the first time she had actually tasted milk.  She drank half of her portion and was very tired from the effort.  They placed a small tube down her nose to continue the rest of her feeding.  She quickly got the hang of things and was receiving about 3/4 of the amount a typical newborn would eat and was taking it all orally.  She became content and happy, consequently, so did we.  

Count Your Blessings...

"When upon life's billows you are tempest tossed.  When you are discouraged thinking all is lost.  Count your many blessings name them one by one; and it will surprise you what the Lord hath done."

Monday, December 10th, was one of Etta's worst days thus far.  She was extremely fussy and seemed so uncomfortable it nearly broke our hearts.  We could do next to nothing to comfort her, and had to resort to sedation medication a few times to help her calm down.  When we would try to hold her, she was rooting around for something to eat, which she couldn't have.  It was so hard to realize that holding my baby made her uncomfortable and more fussy then when she was lying in that sterile baby bin incubator.  Spencer and I were both extremely frustrated and upset throughout most of the day.  On the way home from the hospital  we were listening to a conference talk by Jeffery B. Eyring where he spoke about recording the Lord's hand in our lives.  Something he said really struck me, motivating this post:  I recorded daily the Lord's hand in my life so my children could rely on this later.  I knew that it was time to begin noting and recognizing the tender mercies of the Lord, so I began a list:

• Looking around at Etta's neighbors, I know things could be a lot worse.  Etta is comfortably breathing on her own and is the considered the "fat" baby in the NICU, even though she has lost a whole pound since birth.  She was born at 40 week, 6 days with fully mature lungs, a functioning circulatory system, and is not easily overstimulated. I can hold her, touch her, and sing/talk to her whenever I please.  I spoke with another mom whose baby has been in the NICU for 2 months,  born at 23 weeks old who has no such luxuries.
• I'm very grateful for a wonderful husband who is not afraid to let people see him cry, hear him sing to Etta, or watch him make silly voices and faces to amuse her.  In fact, when he does these things, especially singing, I happened to look around to see the entire pod of nurses watching and  I overheard some conversations about wanting to be working on the pod with the "Dad who sings."  
• Etta could have easily been born early, since I developed high blood pressure about 6 weeks  before delivery.  However, the issue resolved itself and was normal after about 2 weeks.  If she had been born early, respiratory issues would have been likely, making her bowel surgery impossible until those were resolved.
• My recovery has actually been quick and relatively painless.  I couldn't imagine recovering from a C-section and having Etta in the NICU.  I have been able to manage my pain with Tylenol once a day and seem to be recovering without complications.  
• I have a wonderful support system.  Many family members and friends have stepped in at a moment's notice to help us and offer support.  I am grateful for the power of the priesthood and the blessings I have received from Spencer and my Dad. 

Although this list is nowhere near finished, I realize that although I may feel "discouraged and feel that all is lost," that our family has not been left alone and that Lord is mindful of us.  

Surgery Day

12/13/12:  Today was the "big" day for Etta to begin moving forward.  Dr. Downey was confident in preforming the surgery today and was ready for the possible challenges.  The purpose of the surgery is to place the Stoma so Etta can get on with coming home.  Although it may seem placement of a Stoma is a relatively fast and easy process, placement in Hirschsprung's disease patients is critical because the surgeon has to find the area of the intestines that has stopped working by biopsying the tissue and having pathology check for nerve cells.  Although the actual procedure does not take long, but  involvement from the pathology team does take time.  In order to ensure Etta was safe during the surgery, she was intubated with a small tube through her mouth to help her breathe.  Etta's surgery was almost 3 hours long, but well worth the wait, as the placement was successful.  Following the surgery, Etta was extubated about 7 hours later and is currently doing very well.  Her breathing and respirations are good, her pain is under control, she is somewhat coherent, and her color is great.  Dr. Downey has ordered feeding to begin as soon as the doctors think she can tolerate milk again.  Yea!!

Diagnosis and Waiting...

After beginning to settle into being NICU parents, including constant visits from various doctors, long periods of waiting, and the incessant beeping and alarms ringing in the beds around us, our surgeon, Dr. Downey, pronounced his hypothetical diagnosis of Hirschsprung's Disease.  This disease is a congenital condition which involves a blockage of the large intestine due to improper muscle moment in the bowel.  Usually, 2 surgeries are required to correct condition.  The first surgery is placement of a Stoma, or colostomy bag, to ensure the patient's digestive system can function.   The second surgery is the actual repair of the section of the bowel that does not work.  During the second surgery, the ineffective area is removed and everything is connected again and the Stoma is removed.  Dr. Downey predicts that Etta will have the Stoma placed any day, and will require a return surgery when she is about 6 months old.

So, for those of you who know how patient Jessica can be, this waiting game has become super annoying and frustrating.  The most frustrating part is the necessary involvement from the Pathology department.  In order to proceed with surgery, the pathology report for gangelion nerve cells has to be 100% correct.  Pathology at our hospital did not agree with the 100%, so Dr. Downey transferred the biopsies to Primary Children's Medical Center for a second opinion.  After receiving confirmation, surgery was scheduled for 12/13. 

Day 2

After the initial shock of what seemed like "insta-baby," we began to settle into having Etta around.  She quickly had her daddy wrapped around her long little fingers and was a very content little girl.  After trying numerous times to feed her, with no avail, as well as an issue she was beginning to develop with throwing up, mom kinda went crazy on the nurse, who said that Etta had just swallowed a lot of amniotic fluid during birth and was fine.  This somewhat embarrassing outburst at the nurse yielded a call to the pediatrician and an order for x-rays to examine her stomach and bowel.  We quickly found out that Etta had an issue with her small and large intestines and could have a blockage, which was causing her to throw up all of the time.  After consulting with the pediatric surgeon, he quickly mandated she be transferred to the NICU for care and more testing. This news was very shocking, and not what we wanted to hear, but we wanted to make sure we took care of her health issues.

 After being admitted to the NICU, a tube was placed through her mouth to help suction all the fluid she was throwing up so she could rest.  She also was hooked up to many monitors and an IV for fluid medication.

I don't think we really ever appreciated the things that parents can go through...we were quickly awakened by the love we feel for Etta and helpless we feel over her condition and hospital stay.  It is so frustrating to love someone so much and see them go through so much within the first few days of life and to not be able to do a single thing to change the circumstances.

But, we have seen many blessings and have been touched in so many ways by those offering to help and the many prayers in our family's behalf.  

The Beginning...

We thought it would be a good idea to document the happenings in our life in order to keep our loved ones up to date on the "baby news."  First of all, we love all of you and have been deeply touched by your love and concern.  It has been quite a roller-coaster ride, that we continue to hop on each day.

December 6th was the "big"day.  We were told previously from the doctor that our baby would need to be delivered via c-section because labor was not progressing as it should, so we arrived at the hospital promptly at 9:30 am somewhat ready for the big surgery.  We just tried to focus on the fact that we would meeting our baby in a few short hours and would be missing the whole prolonged labor thing instead of the surgery part.  During the check-in, the doctor began to "hmm...." and soon suggested that we may be able to do a traditional birth instead of the scheduled c-section because all of the sudden, labor was progressing.  So much for having a plan...

So, after a couple of doses of labor enhancing drugs, Etta was ready to be born.  After only about 35 minutes of pushing, she entered the world with a bang without nurses or doctors (the nurse stepped out to find the doctor, thinking it would be at least 30 more minutes.)  Right after she left, Etta decided it was time to come and surprise everyone, most especially her mom.

Etta Rae Lloyd entered the world on December 6, 2012 at 10:22 pm, tipping the scales at 8 lbs 11 oz and measuring 20 inches long..  And the journey begins....