Brennan's Story

[Written 04/03]
Some background:  My hubby and I married in July of 1989, after being together for almost seven years.  He was 35 and I was 28 (one month shy of 29).  We started our family late, as most people would say, but we
got married and planned for children at a time that was right for us. (Of course, as time went on, we thought maybe we should have married and started our family sooner, but that's just not the way it happened.)  We
had our first child, our beautiful daughter Jasmine, two years later in July of 1991.  Trying for our second child was not easy.  We tried for three years, suffered a miscarriage, and was later told that we had a problem termed secondary infertility.  Eventually, in 1996, we began ART(assisted reproductive technology) and was able to conceive through IVF(in-vitro fertilization) our second child, our beautiful son Weston, in June of 2000.  That experience in itself was a whole different story (ormiracle).

So when we found out that I was pregnant with Brennan, we couldn't believe it.  After all we went through to have our second child, we didn't even think we could have another one by 'accident'.  At first we were stunned, then happily surprised but my feelings were mixed.  I thought about my postpartum depression (or "baby blues") after having Weston, how I was still trying to lose weight from that pregnancy, mine and my husband's age, what would our daughter say, and so forth.  But then we knew that things happen for a reason and we should be happy for
being so blessed as to have another child.

This is Brennan's story........
His ETA was 1/23, but we scheduled a C-section for the 11th since our other two were delivered by C-section, although I did attempt VBAC the second time around but that failed to work.  Anyway, my pregnancy was
uneventful and the babes decided he wanted to come out sooner, so our beautiful son Brennan was born on Tuesday, January 8, 2002 at 12:05 p.m.  He weighed 5 lbs. 5 oz. and was 17-1/2" in length.  I felt relaxed
after having Brennan.  He was so tiny (smallest of our 3)...I felt he needed me to just hold him and things would be all right, and the nurses simply adored him too.  I managed to get up and around more quickly this
time, I didn't get so swollen.  He didn't cry so much and I looked forward to seeing & cozying up with him whenever the nurses brought him to my room.  His Apgars were within normal limits.  He was given hearing
tests twice and failed a percentage.  The person who conducted the test said that it's probably because he's so little, his ear canals are very tiny, and he probably has some fluid in there from birth.  She told us it was a particular frequency he wasn't responding to.  We were a little concerned and hoped it wouldn't be anything serious just something minor, so we scheduled to return in two weeks' time to re-test. Everything else seemed to be just fine and dandy-- Brennan was as cute as could be and we looked forward to bringing him home.  I was admitted Tuesday and on Friday was discharged from the hospital and excited to be going home with the newest member of our family snug in my arms.

Brennan hadn't gained any weight while in the hospital and it was thought that maybe he wasn't latching on well or his suck reflex wasn't strong enough.  We took him to his pediatrician's office the following Monday for a check-up.  His appt. went pretty smoothly.  He saw the nurse practitioner, he was as your average baby with all the normal reflexes.  But she wanted us to return in three days to check for weight gain, as it had dropped a few ounces.  On Thursday-- Brennan saw his ped's associate and was still not up to par in the weight dept.  They
asked me to try the SNS (supplemental nursing system) and to come back tomorrow to see how that worked, and for another weight check.  I tried the SNS at home and, aside from the fact that I didn't like it, it just
didn't seem to change anything.  The next day, we're on our way back to the doctor's office wondering how much difference is a day going to make?  As usual, the medical asst. took Brennan's temp and weighed him and we waited for his doctor.  And then another asst. came in and took his temperature and checked to see what he was wearing.  She then told me to place Brennan under my shirt to warm him up against my chest.  Of
course Glenn & I am wondering why, but I comply.  Finally his doctor comes in and tells us that his temp is very low and that most people worry about high temps but a low temp can be just as serious and could
mean an infection.  The thing is, on the outside, Brennan didn't even feel or look cold but his rectal temp showed 93.1.  He also wasn't regaining any weight.  She started to tell us that we need to take him o the hospital right away because it could mean meningitis or.....  and my eyes started welling up with tears.  His doctor gave me a hug, and I wondered--how serious could this be?  Before we left, she did a lumbar puncture on our little boy and we took the fluid sample to the hospital with us so they could run some tests.  Her office had already called the
hospital and we were instructed on where we were to go when we got there, and they would be expecting us.  I felt my heart sink.

We drove to the hospital.  When we got there, I tucked Brennan into my acket to keep him warm.  We went up to the Pediatric floor and checked him in.  Like the doctor mentioned, his room was right across from the
nurses station so they could keep a close watch on him.  From then on everyone else took over.  They poked and prodded him, not being able to withdraw significant amounts of blood.  Glenn and I couldn't do anything
for Brennan, so we just stood or sat watching and waiting.  Whatever tests they ran came back pretty much within normal limits.  The only diagnosis given at the time was hypothermia and they kept him warm in an
isolette.  It was decided he should be fed by both bottle and NG tube for now, as it seemed he was still not feeding very well, and  I could still express breast milk for him if I wanted.

Not until the following Monday did we finally find out what was wrong. A couple of young assistants came into the room rolling in an ultrasound machine.  We noticed that the girls were taking awhile, and kept turning
their heads to glance at us.  Seems as though they were a bit confused and called in someone more experienced to scan and look at the u/s.  I asked if someone would be seeing us today to go over the results and was told yes-somebody will definitely be coming in to talk with you today. When Brennan's ped arrived she looked concerned.  She told us they couldn't find anything on u/s because there was hardly any brain tissue
there.  She also said it wasn't the best picture and it may not be showing everything, so she wants to order a CT scan today as well as do an MRI tomorrow for which she'll call in a neurologist to look it over. Well, of course we were shocked.  We were hoping the CT or MRI would prove something less severe and show more brain tissue than what was seen on u/s.  We just couldn't understand any of it.  The following day, after the MRI, his ped and the neurologist sat us down and we were given Brennan's diagnosis of hydranencephaly.  The neurologist told us that it's likely Brennan had either a stroke in-utero, or a blood clot, which occurred during the second half of pregnancy, or it could have been caused from some sort of maternal infection.  He didn't directly come
out and say it but from what was expressed in terms of Brennan's future-the word "vegetable" did come to mind.  He also said that it's up to us but he really didn't think any more tests should be done, as Brennan had already been through enough, and we could keep him at the hospital until we decided on what we wanted to do, and just to try and keep him comfortable.  He didn't actually say how much time Brennan had, but you could tell they weren't expecting him to make it out of the hospital at all.  Deep down in my heart I knew that our son wasn't about to leave us just yet.

Brennan stayed in the hospital for two weeks and, I have to say, we were all treated very well by everyone there.  The nurses took very good care of him (they spoiled him) and their optimism made it a little easier for us to cope.  We worked on increasing the amount of time he spent outside of the isolette to slowly get his body temp acclimated.  We had a physiotherapist work with us on positioning and taught us how to make it easier for him to take the bottle, she also instructed me on how to stretch his limbs.  One of the nurses taught me how to place an NG tube-yikes!  It seemed that everyone who helped with Brennan's care fell in love with him-and why not-he was precious, calm and adorable.  They brought gifts for him, took pictures and also presented a care package for Brennan and for us as we prepared to leave the hospital.  We did have to deal with a lot of unexpected information in a very short period of time, and a social worker came by everyday to talk with us about different issues.  We even signed a DNR then because none of us knew any better.  My husband & I were fearful, tearful and numb, but also grateful for the loving care our son received.  Brennan was not going to be placed anywhere, and on Feb. 1, 2002 we brought our boy home with us to be where he belonged--with his family.

This is what I believe and also what comforts me, and I've explained the situation to our other two children this way:  God delivered us a beautiful, innocent soul to be a part of our family - an angel with a broken wing - to love and take care of, and for us to never give up on. Because of his disability, we will learn a lot of things...about
ourselves, about others, and especially of what unconditional love truly means.  Brennan is a blessing in every sense of the word.  And when the time comes for him to return to our Father in heaven, his body will be
whole again, and his spirit will soar....and he will certainly keep watch over us.

We were fortunate to have an isolette in our home for about a month, which Brennan eventually outgrew.  He received hospice care at home (basically for vitals and weight check), but after six weeks I told his
ped I didn't think it was necessary anymore and we discontinued the service.  Brennan was doing well, being fed by bottle and slowly gaining weight.  He had a shunt placed at 7-1/2 months--his head circumference
had begun to increase, off & on, in the months prior.

We hadn't taken him to have his hearing retested, but we know he does hear.  He responds to sounds.  And when we talk to him, one-on-one, he coos and even mimics at times.  He still has a startle reflex, where his
body will jump to loud noises or quick, sudden movements.  He receives occupational therapy at home once a week and infant stimulation therapy once a week.  He enjoys doing his stretches, and likes when we fuss over
him.

At 15 months old, Brennan is a pretty happy little guy.  No serious illnesses to date other than a few colds and the stomach virus.  We had a hard time feeding him solids at first because of oral hypersensitivity, but his OT has helped us in this area and he is eating much better. He does have favorites like applesauce or pears!  He's able to lift his head and keep it up long enough to look around, from his right to straight ahead then to his left side, while laying on his stomach.  He moves around by creeping and he pivots while on his back. He recently started rolling over from his back to his stomach!  (I honestly doubted whether he'd be able to do that or not.)  He is full of surprises!  He loves being surrounded by his family, we usually know what makes him smile and giggle.

The initial shock & sadness we felt when we first found out about his condition is slowly fading and being replaced with reality and gratefulness.  It's not easy taking care of anyone who may be totally
dependent on you, as it is very challenging, but as with the rest of our children, we have grown to love and appreciate everything about him more and more each day.  Brennan completes our family in more ways then we
thought possible, we simply cannot imagine not having his presence in our lives.

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[Updated 11/03]  At 20 months, we took Brennan to see a pediatric ophthalmologist.  After his exam, I asked her if he could see.  Her response was yes, there is no question.  She doesn't know if he's actually focusing in or concentrating on what he's looking at, but he can see.  The optic nerve in his right eye is smaller than in his left
eye.  His eyes do track together, but he follows people or things inconsistently.

Brennan is now almost 22 months and is very mobile in his own special way--he is all over the place on the floor or bed!  He rolls over everyday now (both ways).  He enjoys lifting his head and chest up while in the prone position.  He sat unassisted for close to a minute--woohoo! (just another thing we never thought he'd do).  He babbles a lot and has his own little verbiage going on (did he say mama?!).  He loves to blowraspberries.  He reaches and swats at his play gym.  He spins his toy
ferris wheel.  And his older sister always manages to make him laugh. 

His brother loves to play with him and is definitely his brother's keeper-protective.  Brennan's doctor have said that he always manages to
surprise us (by his accomplishments and well-being).  He has no seizures
and is on no medications.  At this point, he feeds orally.  We can only pray that he continues to do well.

It's still troubling at times, all the unanswered questions.  But no matter--we push on, and am grateful to God for this precious child...our blessing in disguise.  He has such a beautiful smile that lights up the entire room--it's very contagious. :-)  Just to hear him laugh and knowing that he's happy brings us much joy.  And, most of all, he has really shown us all the true beauty of unconditional love.  ThanksBrenny, you are so loved.

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[Updated 02/05]  A couple months after Brennan turned 2--he began to have a mild, absence-type (petit-mal) seizure.  He was placed on medication and it's been working well for him.  Aside from a few ear
infections, colds, tummy bug, etc., he's done alright.  We drove to Nevada and Utah in June of 2004, and then flew over to Hawaii in August, to visit with family.  Brennan did great, and our family had a wonderful
time.

 From Dec.'04-Jan.'05 Brennan was hospitalized for 26 days.  We took him to the local ER due to labored breathing and abdominal distention.  He received neb treatments.  They ran a few tests, x-rays and so forth.  We
were told it looked as though he may have sigmoid volvulus.  We were then transported to the children's' hospital.  The next day Brennan underwent exploratory laparotomy surgery.  He had a bowel obstruction,
and his colon was enlarged.  Because they thought he might have Hirschsprung's disease, they did a partial colectomy and placed a temporary colostomy.  He then contracted RSV in the hospital and went
through a rough period with that.  He also had his left VP shunt externalized and eventually removed and replaced with a right VP shunt.

Needless to say, it's been a very scary time for us.  But despite the many challenges, Brennan has managed to pull through.  He's proven himself to be one tough li'l' guy, and we are so very proud of him. 
Brennan continues to amaze us and is doing wonderfully at this time.