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.