Quick Update

I'm going to be honest with you...
I'm in a bit of a funk...
hence why I've not blogged lately.
Too much is going on lately...
it's impacting me deeply...

But here are a
few updates...

B
was approved for
Early Intervention
He's "significantly delayed" in
communication and cognition
(although I disagree with the cognition area)
He's doing well post-surgery
He has a teeny cold
I love him

P
was scheduled for an
Endoscopy with a 24 hour pH probe study
for today but
it was cancelled upon arrival because
last night he
was retracting: sub-costally and sub-sternally
and wheezing
and breathing really, really fast - high 50s
We'll go back
in two weeks to attempt the edg/pH again
I love him

My boys make it
worth waking up every day
I could kiss them a
million times

They give me hope
They are my everything

New Angel

*updated*
One of my best friends, Holly, went in to be induced last night at 39w5d.
They began hooking her up to the fetal heart monitor and they couldn't find a heartbeat.
They brought in an ultrasound machine... two techs later... still no heartbeat.

Garrett Michael
April 21, 2010
10lbs 9oz
2:30pm

Sweet baby boy,
you will be greatly missed.

Please pray for Holly, Guy and their children, Bryanna, Gena and Gavin.

My heart is broken for her.
I wish I could take away her pain.

Please pray for a peace that fills the room when she welcomes sweet Garrett's body into her loving arms.
*Holly was able to hold him for awhile and she said it was very peaceful.

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. " Psalms 139: 13-16

B & P

B had surgery 1 week ago today.

He had a PE tube placed in his left ear, a maxillary (upper-lip) frenectomy and a sub-lingual (below tongue) frenectomy. We arrived at North Oaks at 6am and shortly thereafter, we were taken to B's room. The nurse went over his medical history, gave us a gown for him and administered a dose of Versed to B. Oh my... I can't even begin to put into words what the Versed did to him. I felt slightly bad for laughing at my 19 month old but he was l.o.o.p.y. to say the least. He barely had head control and he was smiling and laughing and just plain goofy. The RN brought Daddy and I into surgery holding with B. We met with anesthesia and Dr. Peltier (such an AMAZING ENT). And then it was time... time to hand my baby over... so difficult. He went into the arms of his surgery nurse screaming and crying and I walked away with Daddy’s arm around my shoulders, him telling me that it would be okay while massive tears were welling up in my eyes. That walk back to the waiting room was tough for me. Daddy left for work and I was left there with my mom and MIL. At 8:02am, we were brought to the conference room because his surgery was over and he was on his way to recovery! Dr. Peltier came and spoke to us - he said that he only had to place a tube in his left ear and he performed both frenectomies. He placed 1 suture below his tongue and 3 on the inside of his upper lip. He said that I should expect for B to be cranky/fussy for a few days because of the oral surgery. Then he brought me into the recovery room and B was still asleep - they were working on arousing him. And they succeeded. And he was less than thrilled. He kicked, hit screamed, flailed, threw his body backwards... full on tantrum... all with his eyes closed... for a good 15 minutes. This reaction is quite normal for small children after anesthesia. And this continued the entire time we were at the hospital. My mom and MIL were insistent that he was in pain even though I kept reassuring him that he was not. Dr. Peltier administered a local anesthetic at both frenectomy sites; he said that he would be numb for a couple of hours. They had also given his a dose of Tylenol with Codeine in recovery. Our nurse discharged us and once we were home, the nugget was pretty happy. The crying stopped. He ate a small meal, took a nap and was a little cranky on/off for the rest of the day. And B was back to normal the next morning!

We've already noticed a few changes since his operation. When he points to his/my/P/daddy's eyes, he says "eyyyy" and he has said "nooo" once when he pointed to his nose! And the biggest change is that B is FINALLY sleeping through the night! B has never slept for longer than a 6-7 hour period. On an average night, he was waking 2-4 times. But big man sleeps all.night.long. - we now believe that his ear has been bothering him all along. Oh this was such a blessing in disguise!

Yesterday, P underwent general anesthesia for his first time... at 4 months old... for a brain MRI.

We arrived at OLOL at 7am (and thankfully P only lost it for about 30 minutes from being NPO after 3am). We were wheeled down on his bed shortly after 9am. I met L who was absolutely amazing. I had one last consent to sign (for contrast) and I handed my sweet baby over... again... really difficult... had to fight back tears... but I knew that he was in good hands with L. She came out a few different times (1) she said he was asleep and they were going to start his IV; (2) his IV was started - top of the hand - got it on the 1st stick - he has really good veins; (3) he was intubated - got it on the first pass; and (4) they had started the imaging. Another RN came out and said that things were going well and we could go grab a bite to eat and she would call us when he was headed to recovery (I gave my cell and my mom's cell numbers). We had breakfast and decided to walk around the gift shop. While in the shop I decided to look at my phone for the time... they had called me... twice... and I missed both calls. We went straight to the surgery waiting room and told the receptionist what happened. She called recovery and he wasn't there yet. Mom and I waited in the hall because the waiting room was pretty packed and I am too much of a germ-o-phobe to sit immediately next to a stranger if it's unnecessary. Out of nowhere I heard a very familiar I.am.really.angry sort of cry and sure enough, I saw P, 2 RNs, and his bed whisk past us in another hallway. A few minutes later I was called to go into recovery.

L was back there and she said that everything went well. I thanked her again for being with him. They gave him 2 ounces of sugar water because the poor guy was starving! They said to go ahead and get his bottle ready because he was still screaming. And then my sweet baby was placed in my arms. I started feeding him and one of the RNs did a "blow-by" because his O2 sats were in the low 80s. After a few minutes, she had him into the mid-90s. He ate 25cc and lovingly gazed into my eyes. P busted out of recovery really quickly! He was oh.so.different from B in regards to his post-anesthesia mood. P was happy and smiling and giggling. Because he was responding so well, we were discharged at 12:15pm.

On the way home, I called the pedi's office to see if I could get him in for his 4 month well-visit. I went home, picked up B and we were off again. P’s stats were: 13lbs10oz, 24" long and 17.5" head circumference. Dr. Leumas came in and I asked if it was okay for him to get his vax because on the MRI with contrast under anesthesia. He said yes because everything should have left his system by then. He asked what P had an MRI of and why. I said "of his brain" and "because Dr. Alberty took several measurements of P's head - all came back larger than normal and his suture lines were wider than expected and his soft soft as well." Dr. Leumas said it was a good call on Dr. Alberty's part because P's head circumference was concerning. At 3 months old, Pierce was barely below 50% and now at 4 months he is 90%. Dr. Leumas also stated that we have to be very aware of P's developmental milestones because when you see many sub-systems (his GI tract, spine, possibly his brain) being affected, you have to look at the big picture and ask "why" and "could something be causing all of these issues." We spoke a little more in depth about P's scoliosis. Dr. Leumas advised me on a few different points in regards to questions I need to ask from here out. He was a little concerned about how much radiation P has received... inside of two months, P has had:

• one - 3 film chest x-ray
• one - 2 film chest x-ray
• one - Upper GI series
• two - pharyngograms (VFSS)
• two - single film chest x-rays for Ng tube placement
  

At the earliest, we will have MRI results later today and at the latest, Thursday. I would be lying if I said I wasn't concerned. I initially was more concerned about him undergoing anesthesia than what the actual MRI could potentially show. But after our pedi appointment yesterday, I am a little concerned. I will update once I hear from our GI doctor.

I don't know what to think. I don't know what could be the bigger cause for all of these sub-system issues. I don't dare Dr. Google it because I know I could be overwhelmed with every potential issue out there. And in all honesty, I wouldn't even know where to begin.

I feel like I am continually trying to remind myself to put one foot in front of the other. To breathe. To stay strong. I have to.

But it's hard. I despise not knowing answers. I am afraid of the unknown.

I have moments where I feel like I am cracking under all of this pressure. I have moments where I would love to do nothing more than to kick and scream and cry until all my tears are gone.

I have been deep in prayer. I pray for my boys continually. I pray for strength and wisdom in advocating. I pray for patience in dealing with others. I pray.

Thanks for keeping us in your prayers. We need it. I need it.

ps. Please keep Kip & Angie in your prayers. On Sunday, Hogan went to heaven at two weeks old. He fought a very courageous battle with Trisomy 18.

MRI

I spoke with this lovely lady on Tuesday evening about P. She heads the conscious sedation team for Peds at OLOL! L informed me that after further reviewing P's medical history and because of his weight/size, they feel it would be better for him to receive general anesthesia. With IV sedation, the patient is expected to breathe on his/her own the entire time. With general anesthesia, P will have a secure airway, just in case. She also said that small babies tend to unpredictably metabolize the IV meds. We feel good about this decision. I am excited to meet my Twitter friend IRL now!

No word yet on a time for Monday...

We are off to go run a few errands in preparation of P's baptism on Sunday!

Have a great day :)

Rollercoasters

I feel like I have been on a rollercoaster since we decided to conceive --- so many ups, downs, unexpected turns, flips and loopty-loo's. [for those of you that want the Cliff's Notes version... B had surgery today for tubes due to mild speech delay and mild hearing loss but this post originated from the fact that sweet P needs an MRI of his brain and quite possibly an endoscopy/pH probe as well --- I just became a bit tangential... but read on if you care to know why].

Six months and one miscarriage later, on December 27, 2007, a little stick told us that we would be parents. After my initial bloodwork and an ultrasound at 6 weeks, my fantastic doctor confirmed that our dream of being a mommy & daddy was coming true.

I avoided morning sickness... I was on Crinone (progesterone suppositories) until my second trimester... I was monitored closely due to my short cervix... I narrowly avoided a cerclage... started contracting at 22 weeks... I dealt with hydronephrosis of the right kidney... I gained 29lbs... I was scheduled for a c-section on August 29, 2008... somebody decided that he couldn't wait any longer in my warm, loving, yet out-of-space womb and on August 28, 2008, my water broke [I discovered it had broken around 2:50am - one day I will post his birth story] and at 10:11am, we welcomed a 7lb4oz baby boy by the name of B into our loving arms.

[complete side-note: On September 1, 2009, a lovely hurricane by the name of Gustav hit LA and we were without power for 1...2...3...4...5...6...7...8 days --- yes you read that correctly, 8 days with a newborn!]

In the days following B's birth, Daddy was married to a marshmallow and the father of a yellow baby with equally yellow eyes... for me it was postpartum looking-like-the Michelin-man syndrome (aka edema in my legs) and Mr. B wanted to be yellow like the sun (aka jaundice) but we both recovered rather quickly!

Breastfeeding was not the natural, nurturing, bonding, blahbidy-blah-blah-blah experience that the hospital lactation team made it out to be. I went through every breastfeeding problem known to man (ok... I didn't have an abscess... so almost every potential problem)... sore/bleeding/cracked/wanted to fall off my body nipples, double intraductal yeast (thrush) infection, mastitis a couple times, clogged ducts every time I breathed the wrong way, low supply, etc. After 6 weeks of nursing, I made the emotionally painful, yet physically what-I-needed-to-do-to-be-healthy-overall decision to stop lactating. I beat myself up. I hated that I was giving my baby formula. I hated using bottles. I hated it all. And then one day, I woke up and was over it. I realized that I was happy. I realized that formula wasn't poison that was going to kill my baby... heck, I am a product of formula and I tend to think I am a pretty smart chick. Life was good again.

B was a chunky little nugget (70% from 2 - 12 months old).

B got really sick on February 9, 2009. According to his pediatrician, Dr. B, he had bronchiolitis [90% of the time it's caused by RSV... we fell into the other 10%]. He was put on an inhaler (ProAir) with an opti-chamber. We suctioned his little nose, used our nifty little cool mist humidfier and just prayed. Then every few weeks, Brice had some sort of virus leading up to August 2, 2009 and a visit to the ER. B had been running high fevers for several days... it finally hit 103.7* and the on-call nurse said it wasn't a big deal. I felt differently and we went to the ER. Turns out the nugget had pneumonia. After switching pediatricians, to Dr. L, she ordered another chest x-ray and bloodwork on August 14 (same day my grandfather passed away)... pneumonia was notated along with a really high wbc and low Ig levels. After more bloodwork, a couple appointments with an immunologist, a few weeks of waiting/praying/worrying that our baby had an immunodeficiency, we found out that all was well. Praise God. Dr. L started treating the nugget for Reactive Airway Disease --- pulmicort daily and xopenex as needed for wheezing.

But let me rewind for quick second...

April 26, 2009 --- for the third time in my life, a little stick told me I was "pregnant" --- SURPRISED was an understatement. I kept saying "I know how this happened, but really, how did this happen?" B was 2 days shy of 8 months old... I wasn't ready to have another child... I wasn't ready to be miserably pregnant again... I just flat wasn't ready... but He was [it's so hard to remember that my plans aren't the ones that really count in life...].

I called my MFM and said "Guess what... I'm pregnant again" after some laughing and congratulations were exchanged, I was scheduled for my initial bloodwork panel and an ultrasound at 5.5 weeks... my hcg levels came back really high, but only one tiny bambino was occupying my womb according to my second ultrasound... I avoided progesterone... I was still monitored closely... started bleeding heavily at 13 weeks because of a tiny subchorionic hematoma... my gallbladder decided to revolt and at 21 weeks gestation, it was removed laproscopically... started contracting at 17 or 18 weeks (I can't remember)... had an amnio at 8am on December 18, 2009 which confirmed mature lungs... walked into the OR and at 11:15 am, we welcomed a 6lb15oz baby boy by the name of P into our loving arms (and Cheerio filled hands).

I just knew breastfeeding would be different... well guess what... it wasn't. P's poop didn't transition until he was 8 days old. Lactation thought it was me - which it very well may have been (little did we know that we'd still be battling poop issues today) - I was told to start supplementing with formula (I cried and cried again). At 10 days old, I took him to the pedi for a weight check and he had blood in his stool. I was told to remove ALL dairy from my diet (SO stinkin' hard) and to start supplementing with Alimentum because P appeared to have a milk protein intolerance. Fast forward through another pediatrician change and 4 more painful weeks of nursing and at 6 weeks old he was on Alimentum (no more boob milk for him - he quit it cold turkey, lol). In addition to his poop issues intensifying, his reflux was as well (at 4 weeks old he was placed on Zantac). We were referred to a GI specialist. Dr. A (GI doc) placed him on Nexium 5mg BID (GERD), 1tsp milk of magnesia (constipation), Levsin prn, and EleCare formula (for milk protein intolerance; it's amino-acid based painfully expensive). In P's 4 short months of life:

--- February 18, 2010 --- Upper GI series (ruled out pyloric stenosis, esophageal stricture, malrotation of the intestines) and an abdominal ultrasound
--- February 21, 2010 --- ER visit for blue episode post-feeding
--- February 22, 2010 --- saw Dr. A --- ordered a stat pharyngogram (no aspirations noted); met with Cardiologist (Dr. B) for a stat EKG and ECHO (VSD ruled out; II/IV functional murmur; overall, structurally sound heart); bumped P up to 10mg Nexium BID and thickened feeds
--- February 26, 2010 --- 101.5* fever; pedi ordered bloodwork and chest x-ray; admitted to North Oaks hospital for right upper-lobe pneumonia
--- February 28, 2010 --- follow-up chest x-ray showed pneumonia breaking up but heavy bilateral infiltrates (viral bronchitis); on-call pedi worried about micro-aspirations
--- March 1, 2010 --- transferred to OLOL in Baton Rouge via ambulance to be near Dr. A; initially not impressed with hospitalist service
--- March 2, 2010 --- pharyngogram#2 (no aspirations noted; intranasally refluxes thin liquids); Dr. K said this is either an isolated illness or could be the start of Reactive Airway Disease in Pierce [given family history]
--- March 3, 2010 --- respiration rate in the mid 60s so NPO; Ng tube placed that evening
--- March 4, 2010 --- overnight, AMAZING turn around... DISCHARGED!!!

Overall, March continued to suck health wise for my boys. They both dealt with some rough respiratory problems (lots of Albuterol, Pulmicort and Xopenex were neb'ed in this house) and towards the end of the month, a nasty stomach bug. P had awful diarrhea for about 6 days and then went to the polar opposite with horrible constipation (which, in all honesty, he already deals with chronic constipation - the kid can't poop without his daily doses of milk of magnesia).

--- March 25 --- met with pediatric orthopedic specialist (Dr. W) for thoracic levoscoliosis in Pierce (we will follow-up in June our second "scoli-series" x-rays)
--- March 29 --- met with ENT (Dr. P) to discuss B's maxillary frenulum; while there we discussed B's propensity for left ear infections (1st - October '09; 2nd - January '10; 3rd - February '10). He advised that he would not recommend tubes because (1) he is conservative and like to see 4-5 ear infections in six months and (2) B was getting to the age where they typically begin to outgrow ear infections and we are out of "ear infection season" (aka cough/cold/flu season). We further discussed his frenulum and I asked him about B being tongue-tied - more specifically, if that could be the culprit for his lack of speech. He asked me to further explain to him what I meant. I informed him that B says about 2-3 words (mamamama/mama/ma and a very distorted version of kitty/mickey and eaaa [eat]). Dr. P said B had a mild speech delay and wanted us to have a hearing test. Upon examination, he agreed with clipping the maxillary frenulum, was up in the air on the tongue-tie and saw fluid in B's left ear. We had a hearing test. The speech therapist placed something each ear to test the the movement his tympanic membrane (ear drum) - she said both were more rigid then they should be (which could indicate fluid). The next step was a hearing test in a sound-proof booth - various sounds were made from different corners of the booth. He scored below normal. Dr. P said, given his mild speech delay and mild hearing loss, that he wanted to put a tube in B's left ear. His surgery was today (April 13... more to come on that in a different post).

Yesterday, P had a visit with Dr. A (GI) because we've seen some regression with his GERD. Dr. A seems to think P's constipation is under control but he was worried about the regression. He said that usually when a doctor places a child on medicine, he can predict the way things will go; and typically, by 7-9 months, children outgrow GERD. 95% of children will respond to standard medical therapy - the other 5% are serious acid producers. Dr. A said that 10mg of Nexium BID (2x/day) should be plenty for a child of P's size. He took several measurements of P's head, felt his suture lines (where the bones of the skull fuse together) and his anterior fontanelle (soft spot)... he stated that those measurements were all on the larger side. He initially wanted to do an ultrasound of P's brain but decided to go straight for the MRI because ultrasound imaging has a hard time looking at the cerebellum. He said it could be something as simple as hydrocephaly (I know, I just said simple... not quite simple, but in the realm of potential issues, it is simple). If his MRI comes back clean, we move onto an endoscopy with a 24 hour pH probe. Typically a pH probe is done for reflux confirmation but seeing as how we already know that Pierce is a refluxer GERDling, it's being done for a different reason. Dr. A wants to see if the Nexium is holding him based on his adicity levels over a 24 hour period. P will have a probe tip in the upper portion of his stomach and in his esophagus as well.

I received a call today from our GI nurse. P's MRI with sedation is scheduled for Monday, April 19 at 9:00am.

And for the heck of it, I'll finish with the other thing we've been dealing with in regards to our children... we met with Early Intervention regarding B... long story short (because this really bothers me/upsets me/makes me feel like I've failed as a mother/blog coming soon to a webpage near you about this guilt)...

--- March 31 --- Initial meeting with Early Steps (EI); B qualified for meeting with a speech therapist
--- April 8 --- meeting with speech therapist; ended with her saying "I can't promise you anything but I am pretty positive he is going to qualify"

In the next week or so, we will have a follow-up meeting to discuss his results, etc. I am happy that we caught this early and I am happy that he will get the treatment he needs but at the same time it's hard to swallow the idea that he has a "significant delay" --- more to come later --- I am tapped... emotionally and physically.