my sweet baby boy

An open letter

Dear Mr. President,

[Not that you will ever read this blog entry but I figured why the heck not...] I have a few simple questions for you.

1. If this health care reform is such a "needed" change and a "great" thing for our country, what explanation can you offer for the very passers of this bill being excused from coverage? I am confused as to why they would fight so hard for something, yet be exempt.

2. Isn't it unconstitutional that the number of votes needed to pass the HCR was changed (lowered)?

3. How can you FORCE someone to get health insurance. If they don't want it/cannot afford it, this lovely HCR bill will penalize them for THEIR decision (I mean you claim to care about what the people want... but it's funny, because the majority doesn't support HCR).

4.[this really gets me hot...] For someone who is so pro-choice and it's all about "their" choice.... where is MY choice - why don't you care about MY feelings, especially when it comes to MY tax dollars paying for THEM to abort their unborn babies. I am against abortion and I think it's tragic that MY money will go towards murder. n-o-t-h-a-p-p-y-a-t-a-l-l

I am sure that when you leave office you will look back on your term as successful but I guess it depends on what you define as successful. If you define digging our country into an even larger amount of debt inside of one year of presidency as a success, then I guess you were. It's sad to think that my now 19 month old and 3 month old will be paying off this debt during their working years. But in my opinion, you just guaranteed yourself only one term in office.


- One very unhappy citizen


Our government has failed us (shocker, right?). In what is supposed to be a democracy, our leaders have decided to not listen to what the majority wants. Instead a platform was pushed and tweaked and modified until the bullies on the playground got what they wanted. Healthcare reform was necessary just not in the way that it occurred. Welcome to socialized heathcare, America - the land of the free!

19°

19°... that is the present COBB measurement of P's spine. We found out on Monday that he has thoracic levoscoliosis. I brought him to the pedi because he started with a fever Sunday evening - this was on the tail of that lovely tummy bug. He said everything appeared normal and that P was on the upside for the virus - yey! While there, I mentioned my concern of P's hips/legs always pointing to the right in his carseat and how when I hold him I can feel his body leaning/pulling towards the right. He decided to look at the radiology reports from his xrays from February 26 and February 28 (hospital admit and inpatient xrays) - both noted scoliosis [why we were not made aware of this is beyond us... but that's not here nor there right now].

February 26

February 28

The pedi said if only one report noted scoliosis, he would possibly chalk it up to being positional but since both reports have it noted, we needed to to see a prto specialist. He recommended waiting until April but we decided otherwise. We saw Dr. Frederic Warren at Ochsner Childrens yesterday and a "scoli series" was performed [just 2 chest xrays]. He calculated P's COBB measurement at 19°. He stated that since P is so young and he falls just outside of the "moderate" level, we are now in "watch and wait" mode. P goes back in 3 months for another scoli series and to see if his measurement increases.

We also have an appointment on Tuesday with Dr. Bennett of Tulane - we've heard that he is amazing with pedi scoliosis. I am curious to see what his thoughts are.

I will follow up on Tuesday with a post about his findings/thoughts/etc...

As for me, after discussing things with Daddy, we've decided it's best for me to move forward with the hysterectomy. It is scheduled for April 28. I spoke with the physicians assistant two days ago and he a few questions addressed. She informed me that I am having a total hysterectomy (complete removal of the uterus) not a partial (removal of the upper two-thirds of the uterus). The procedure will last for about 3 hours (typically, it takes 2 hours but I've had 2 c-sections) and I will stay 1 night in the hospital. I will have 5 small incisions.

That's all for now...

tummy bugs, my little GERDling and the "H" word...

A lovely little stomach virus has decided to make my home it's home. It's not welcome here. at. all. The boys have pretty bad diarrhea and are quite cranky little people. P is barely eating - he takes about an ounce every time I offer. It took him 5 hours to drink 3 ounces. B seems to be doing better. I am hoping that by the end of the weekend, they are both on the mend!

Ahh my little GERDling... at times I feel as though we are moving in the right direction and then I have days where it looks like we are beginning to regress. He is on thickened feeds with Elecare, 10mg Nexium BID (twice daily), Levsin drops as needed and 1/2 tsp milk of mag to combat constipation issues - this lovely combination plus the amazing Nap Nanny seemed to be doing the trick up until 1 week ago. I noticed he was beginning to cough. At first it was very infrequent and random and now it's becoming more frequent. He also had two choking episodes - one on Thursday and one on Friday. I spoke with his GI doctor over the weekend because the on-call pediatrician suggested Pedialyte for 24 hours (can't do that because he severely refluxes thin liquids and intranasally refluxes; we also don't know for certain whether or not he aspirates thin liquids) and then using Isomil DF for formula re-introduction (can't do that either because of his milk protein intolerance - it would cause him to projectile vomit the entire feed). Our GI doctor said continue with the thickened Elecare and to watch for signs of dehydration. He agreed that I need to call the office this week regarding P's GERD.

And the lovely "H" word... a hysterectomy that is. I said that I would share my thoughts on it... I think that I am going to go through with it. I truly feel as though it's something in my deck of cards at some point in my life. My mom, her sister and their mom all had complete hysterectomies (with the exception of my aunt having one ovary left). I think I would rather have it done now while my boys are still young.

My history... When I was 17, I had the worst periods - horribly heavy bleeding, clots the size of the palm of my hand, cramps that would have me doubled over in pain. My mom took me to the GYN and I was put on BCP and things went back to normal. In February 2005 I had random breakthrough bleeding with large clots again and my doctor chalked it up to a fluke pack of pills; December 2005 - LEEP for grade III cervical dysplasia; April 2006 - cold cone biopsy for grade III cervical dysplasia - margins were very close but everything was removed; normal paps since. I got off of BCP in July 2007 to TTC; periods were just as normal as when I was on BCP; miscarried in October 2007 at 6 weeks - super low progesterone; got pregnant with B in December 2007 - low progesterone again - RE told my MFM to put me on Crinone (vaginal progesterone suppositories) - pregnancy went well despite short cervix, no cerclage needed - August 28, 2008 we welcomed B at 10:11am via c-section; October 28, 2008 - had Paragard IUD inserted (super painful due to cervical stenosis; had to have local anesthetic); December 2008, uterus expelled IUD; April 2009, biggest shock... pregnant; June 2009 - tiny subchorionic hematoma resolved; August 2009 - laproscopic gallbladder removal; December 18, 2009 - 8am amnio showed mature lungs and we welcomed P into the world at 11:15am via c-section - tubal ligation; 13.5 weeks later still spotting daily with some lighter bleeding mixed in... sooo tired of it.

I am tired of spotting every single day. I had my tubes tied which signifies that we are done having children. I think I have made the decision to move forward with the partial hysterectomy. I just don't want to continually face problems. My doctor informed me that, at times, post-tubal the body reverts back to the way it was pre-BCP... no thank you. I can't deal with that again. I follow-up with my doctor on April 15.

P had his 3 month check up on Friday - he is 23.75" long and 11lbs 6oz - little man is finally growing and putting on some weight!

Now some non-poop/non-uterus/non-GERD updates... B is a wild one I tell you! In the last week he has discovered his love for climbing. So far I have found him on the dining table: one time, eating grapes and the second time just standing in the center of it smiling; and sitting in my sink in the bathroom. I guess the fun has just begun, eh?

Well I am off to try and get some things done before my husband comes rolling in - last night was his best friend's bachelor party... hopefully it was nothing like The Hangover - ha!

Speaking of my husband... ten years ago today we started dating. I had NO idea that he was going to be MY husband and the father of our two beautiful boys. God has blessed me with an amazing husband and father. I love him with every fiber of my being. 10 years later... almost 3 years of marriage and 2 children later and I wouldn't change a moment of our history... I look forward to chasing eternity with him.

Updates

At times, I feel as though the day has slipped by so quickly that I don't know which way is up and which is down... today was one of those days.

I had to be at the eye doctor for 9:15am, the GYN at 10:30, lunch for 12pm and B had a dental appointment for 1:30pm.

Eye doctor went well... my eyes have gotten a tad bit worse but I guess that happens, right? I quickly selected 2 pairs of frames [they were BOGO at EyeMasters!], paid [much more than I had planned on] and left. After we finished our day of running, I went back to pick up my new glasses [x2] and I despised pair #1 - so I am picking my new pair up tomorrow. The second pair, I love like [well, I am learning to love them... they're just different from what I am used to].

GYN... this is where I am supposed to say, if you don't care to read about female issues, click that cute little X in the top right hand of your screen... mmmmk? For those of you continuing on --- tomorrow marks 13 weeks since I delivered P [yes, you read that correctly, 13 weeks!!! Today he actually turned 3 months old - so bittersweet but that's another post, another day] and for the last 11 weeks I have been spotting and having some light bleeding. I haven't had my first postpartum cycle yet. So I called my doctor, who can no longer see since I am no longer pregnant [he is an MFM] so I am seeing the doctor I saw between pregnancies. I told him what was going on and he said I have 4 options... (1) birth control pills [that's a big no {a} I don't like synthetic hormones and {b} did I not have my tubes tied recently to avoid bcp?]... (2) Motrin - 400-600mg three to four times daily [it's an anti-progesterone so it should help control the bleeding... (3) an Ablation - this permanently destroys the lining of the uterus by burning it - I am not a candidate for this because I have had two c-sections. My doctor doesn't know how thin that area is and during the ablation other pelvic or abdominal organs could get burned [not to mention my uterus could rupture]... (4) Hysterectomy - removal of my uterus. For now, I am going to try the Motrin route for 1 month and then follow up with my doctor. [another post in a couple days on my feelings regarding this...]

Dentist - B's teeth look great! On April 13 he is having a frenectomy - they will be clipping his maxillary frenum because it's realllly tight. Other than that, he goes back in six months!

Sadly, I am too tired to continue writing... part 2 tomorrow :)

Heart Hugs for Mia

A friend of mine Jennifer, is 29 weeks pregnant with twins, Mia & Madden.

At 23 weeks gestation, Mia was diagnosed with Hypoplastic Left Heart Syndrome (HLHS).

A fundraiser is taking place on March 26, 2010 at Generations Hall in New Orleans for the difficult journey that lies ahead for Mia and Jennifer.

If you can attend, please do - we will have amazing food, entertainment, a raffle and silent auction.

If you have the means to donate, please do so here.

Most importantly, PLEASE PRAY FOR THE MARRONE FAMILY. Please pray for the earthly doctors that will be guiding Jennifer through the rest of her pregnancy. Please pray for Jennifer and her family to stay strong. Please pray for Mia & Madden. Please pray that God will perform a miracle.

We’re Home!

I guess I should catch you up from the Transfer to us being home! [fair warning... your retinas may become detached after this post]

Mon 3/1 - transferred to OLOL - first time riding in ambulance and we got the bells and whistles sirens and lights - it was quite the bumpy ride and thankfully, my little man slept the entire ride. We arrived at OLOL and the nurses made their initial assessment. They attempted to push a Heparin Lock through his IV and it began leaking (I think the girl used a bit too much force because his IV worked the entire ride to OLOL while his antibiotic [rocephin] dripped into his teeny vein, but I digress). They brought us into our room that we would call home for the next several days... room 3112. We were placed under "droplet precaution" because of the pneumonia diagnosis - basically any one that entered the room was supposed to wear a mask and any time Pierce left the room, he had to wear a mask; and we were only let out for tests/procedures. Three nurses brought us into a procedure room and started a new IV in the top of his right hand and then used a butterfly needle to draw blood from the top of his left hand [where his previous IV was]. I calmed my sweet baby boy down and we were brought back into our room. I asked if they would give me one of the bottles I had prepared and his Nexium and they said I couldn't feed him nor could they administer any meds until we met with the hospitalist [strike #1] mmmm-k...

Enter the hospitalist... Dr. N [a bit pompass {huge dislike of mine}, offers no explanation for his interpretations, and has the nerve to answer his phone at the end of our conversation but before he asks if I had any questions he definitely tried to rebound from that error by saying to whomever he was speaking to "I am leaving the room of a beautiful little baby boy" and then he put his call on hold and asked if I had any questions... possibly but certainly not for you]... moving onto our actual conversation - he informs me that he looked at the xray's and he was not convinced that P had right upper lobe pneumonia. He thought it looked like viral bronchiolitis. He decided to start P on standard bronchiolitis protocol (suction the nose, stay hydrated and that's about it) and he was discontinuing the Xopenex breathing treatments because "evidence doesn't support breathing treatment usage for bronchiolitis or pneumonia." The nurse brought in one of his bottles and I asked about his Nexium and she stated that fabulous Dr. N ordered Nexium once per day via IV... IV administration was fine by me, but once per day and only 7mg?! P's prescription for Nexium is 10mg BID (twice daily).[strike #2]

I think I was fuming by the time our nurse came back in. I told her that I was really upset and second-guessing my decision in transferring his care. She apologized. I asked if we could get a new hospitalist assigned to P's case and she said that every day we would probably see some one new. I told her that under no circumstance was Dr. N allowed on P's case. You have to understand that I have hit a breaking point with medical professionals... I used to never question doctors [heck, I am not the one who went to school for a bazillion years to put two extra letters behind my name - although I have days where I wish I would have {too tangential?}] but after receiving the MOST AMAZING care from Dr. Robichaux, my perinatologist [I could write an entire post on him... every doctor should strive to be like Dr. Robichaux], I have some pretty high standards. Plus, I am P and B's advocate, their voice.

Tu 3/2 - Things began to go more smoothly in terms of health care received, but for poor P, his health began to go down hill pretty rapidly. I fed him 2-ounces around 7-7:30am. When our day shift nurse came in to take his vitals, I pointed out that P was retracting at the base of his ribs [diaphragmatic]. She counted his respiratory rate and it was 58-60. Our new hospitalist, Dr. K, came in to evaluate him. She stated that she was concerned with how fast he was breathing and because his respiration rate was over 60, he could no longer have anything by mouth [NPO orders]. I sat next to him and counted his respiratory rate for a couple hours and the nurse suctioned his nose often - he showed no improvement and was beginning to wheeze. Finally around noon, respiratory therapy came in and did an assessment, he scored a 4 - just enough to receive a breathing treatment with racemic epinephine (and she set him up on a breathing treatment plan). I sat and watched my sweet baby getting worse by the hour... his respiratory rate was steadily 64 and it peaked out at 68; he continued having diaphragmatic retractions and began retracting sub-sternally as well. He slept away the afternoon and by early evening, he was one irritable little man [if you remember, the last time he had anything by mouth was 7ish am]. It's a bit terrifying to sit there and watch your baby working so hard to breathe. P was exhausted and starving (I would imagine from all the calories he was burning in an effort to just breathe). He was steps away from being placed in the PICU because when a baby works that hard to breathe, they eventually poop out. I was on my knees begging praying that God would help my baby boy. Around 6pm, his GI doctor came in to discuss his thoughts and the findings of the pharngogram (videofluoroscopic swallow study) - more to come on that Monday (March 8) after our follow-up appointment. I told him that P was going on 10.5 hours without having eaten and he agreed that it was too long but P's respiratory rate was still in the mid-60s. He said he would recommend an NG-tube (feeding tube). My friends came to visit - I enjoyed their company as they were my only visitors that day and they brought me a delicious birthday cake and a margarita daiquiri [oh the simple things in life]. While they were visiting, the nurses came in and placed Pierce's NG-tube (around 7pm). It was rather interesting to watch except for the fact that they were doing it to my sweet boy. Radiology came to our room, took a quick xray which confirmed that the feeding tube was just outside of his stomach - they inserted it further, re-took the xray and taped the tube to his face. They brought in the pump from which he receive a continuous drip of milk into his tiny belly and at 8pm they hung his first bag of food (11 hours of NPO... poor baby). From 8-10pm, he received 20cc per hour (approximately 2/3 ounce); from 10pm-12am, he received 25cc per hour; and from 12am on, he received 30cc (1 ounce) per hour. Between the continuous feeding drip and the IV fluid drip, P was saturating diapers and his pj's in two hours. I was up all night changing his diaper and clothing.

Wed 3/3 - my 27th birthday. P turned the corner in the wee morning hours. God heard all of the prayers (mine and our family & friends). Dr. K came in for morning rounds and she was seriously impressed with how quickly P turned the corner. His respiratory rate was in the steady 50s; she ordered the IV drip to be stopped (but they left the IV in his hand just in case) and the NG-tube to be removed! A short while later, the door opened and in walked my very sweet husband and B. He baked me a cake and took off of work to come visit for the morning [if you know Daddy, then you know that baking a cake and doing a surprise visit is not like him at all... he melted my heart and made me remember why I love him so much]. The nurse came in and removed his NG-tube. I took B down to the gift shop and bought him a new ball. They stayed a little longer but B wasn't feeling well (on Monday he had a 104.8 fever) so they left early than anticipated. I enjoyed being able to feed P again and he tolerated it very well. When Dr. K came for rounds again, after lunch, she kept remarking about how happy of a baby he was - of course, he was smiling and talking to her! She said that seeing his true personality made her realize exactly how poorly he was doing the day before; in addition, we would be there until Thursday morning because he had to be weaned off of the racemic epinephrine. This was the greatest birthday gift ever. The rest of the day was pretty uneventful in terms of P. Four of the nurses came into our room and sang me "Happy Birthday," brought me a pink and green balloon (my fav colors) and enjoyed the cake from Ambrosia with me. My mom came up later that night to visit. She brought me a lovely gift... a gold brooch with pearls that belonged to my sweet grammie. Overall, turning 27 wasn't too bad but it was definitely one of my more memorable birthdays!

Th 3/4 - Dr. K came in during morning rounds and said that we were being discharged!! We are to follow-up with his GI doctor and pediatrician. He is on Albuterol (neb) for the next five days and then as needed. We patiently waited on our chariot (my mom and B) and told our nurses good-bye [they were sad that we were leaving... us, not so much]. It felt wonderful to be outside of his room and the walls of a hospital (we were on droplet precaution and then contact isolation the entire time). I came home to a VERY clean house thanks to my mom and aunts! I had two very tired, sick little boys on my hands, but it didn't matter because we were at home. together. as a family.

happy to be home!

A very special thank you to the nurses, supporting staff and doctors at North Oaks Hospital and Our Lady of the Lake. And more importantly, to everyone that prayed for my sweet baby. thank you. from the bottom of my heart. thank you.

Transfer

We are being transferred to Our Lady of the Lake Hospital. We will be closer to P's GI doctor (literally, next door). Once we are there, his GI doctor will start running a few tests on him while he is an inpatient to get an aspiration diagnosis. If we were to wait and do our follow-up with him on March 8, we would have to wait approximately 2-4 weeks to get the follow-up VSS. We feel very confident in the decision we've made.

More (on my thoughts) to come later.

We still remain hopeful.