Thursday, December 1, 2005

Luke's birth/PICU/NICU pictures

1st night of his birth....weighing in at 9.5 lbs, 21inches long; severe edema and on the vent (feet and hands were mildly contractured ---later to be determined as positional contractures due to the constricted womb from mom) - globally hypotonic.
3rd day of his birth...still on the vent at Children's and showed to be very symptomatic of a IDM CHILD. (infant of diabetic mother) -- Severe edema, weighed 9.5lbs at birth, broad shoulders and respiratory distress.
Luke was vented, had the belly button line, NG tube for feeding and monitors to support his oxygen rate and heart rate.
4 weeks old---still in NICU and fully extubated off the vent. Breathing room air.

At this point, his glucose levels were finally stabilizing out with medication.

At 4 weeks old Luke had an eccocardiagram and the hole in his heart was very large therefore causing respiratory distress AGAIN. He had to have emergency heart surgery at Medical Plano. HEART PDA ligation. Luke was a tough stick with an IV..therefore we decided at this point to do a broviac line.
7 weeks old and he was hypotonic all over; diagnosed with Laryngomalasia; aspirated thin and thick liquids and aspirated his reflux as well. At this point, we decided on surgery.
Muscle biopsy; fundo nissen; gtube surgeries.
Post OP pics
Side view--his chin was set back and his mouth was drooped on the right hand side
Luke at 2mths old...still in NICU
*his mouth would open wide when picking him up. He was floppy all over and needed full support when holding.



In the NICU at Plano Medical - Our child had a few 'episodes'.

  1. He would choke on his own secretions post op from the gtube.
  2. He refluxed his formula and desatted to the 3o's and choked. Therfore, this is why we opted for a fundo nissen.
  3. After the many episodes of choking, Luke started taking Robinul to help with the secretions. This helped tremendously.

Going home from NICU after 94 days...

Overall, our 94 days in the NICU was exhausting. We still had no clue what exactly was wrong with Luke other than I was Gestational Diabetic. Our discharge orders included our Robinul secretion medication; motrin for the gtube/fundo site and continuous feeds on similac infant formula. 100% gtube fed.

I must confess, we were unprepared for our Luke being on a gtube. I found out the hard way and I really believe many special needs parents are not adequately trained to deal with a special needs child. The biggest thing was not being educated about the state's services for parents like us. I have had to advocate and find out myself. It's been a huge journey.

Monday, November 21, 2005

Luke's birth story

Luke was born 37.5 weeks gestation and considered term on Nov. 21st, 2005. Immediately after birth Luke went into hyper insulin shock and went into respiratory distress therefore was put on the vent in the PICU at Children's downtown.

I (the mom) was gestational diabetic and not treated properly for this during my pregnancy. Hence, why Luke's glucose levels were all over the map. They had to treat him to stabilize his glucose levels as well as keep him vented for 2.5weeks in the PICU.

Consequently, there were 2 failed extubation attempts and then after 2.5 weeks....extubation successful and Luke was breathing on room air. During the 2.5week PICU intubation period, Luke was diagnosed with severe hypotonia throughout his entire body and poor suck/swallow. He also was born with severe edema and had contractures in his hands and feet.

He was also diagnosed with Larynomalacia by the ENT and was ordered to sleep on his side and we were ordered to not let him cry if possible. His throat would collapse if he cried on his back therefore causing him to desat and then he would code. This advice from the ENT saved our son's life many times as we learned very quickly that GRAVITY was Luke's friend. He slept and cried on his side and this really helped.

At this point, Luke had been tested for SMA and many other MDA disorders and all were coming back negative. A modified barium swallow study showed the Luke aspirated both ways (refluxing and liquids going down his throat) therefore we opted for a gtube and fundo nissen surgery to be performed by Dr. Hermann.

Also, during this surgery Dr. Hermann performed a muscle biopsy for Dr. Iannaccone at 3mths of age. The muscle biopsy came back inconclusive and favored that I was gestational diabetic. diagnosis. Overrall Luke was in the NICU/PICU for 94 days.

As parents we were given the diagnosis of hypotionia and Laryngomalacia and we were told to come see Dr. Iannaccone after he was 6mths of age. (to which we did) Dr. Iannaccone, Dr. Gelfand (pulmologist), Dr. Tseng (Ent) and Dr. Conger (primary Pediatrician) were all followed up with during the 18mths of Luke's pre-diagnosis.

At 18mths, Dr. Iannacone scheduled an EMG showing that Luke's condition was specified at Congential Myasthenic Syndrome. 6 weeks later, we were at the Mayo Clinic taking blood tests to determine exact strand of the CMS gene mutation.

At 19mths of age, Luke's gene mutation was confirmed as the Rapsyn gene and therefore he was put on Mestinon medication and responding very well.

Birth pictures below ----minutes after birth
To be bold...this picture below scares the 'hell' out of me. Knowing that my child could not breathe upon birth and to have this picture is frightening. God saved our child for sure.
Oxygen going in on his face.
Me holding him 24 hours later for the first time at Lewisville Hospital and then moments later...Children's picked him up and transferred him to Children's downtown.

Luke is 24 hours old and when I saw him for the first time..he stared right at me intently. I will never forget the moment. He knew I was momma.

Tuesday, November 1, 2005

Pregnancy facts pre-Luke

I get asked all the time about my pregnancy with Luke. So, I wanted to recap my pregnancy.

Here is the summary:
  • I failed my first glucose test at 23 weeks. I had to take a 4 hour test from that point and I marginally passed. I've been told that I would have been treated by most OBGYN's had they seen my glucose score.

  • I also had horrific heartburn. I'm talking...seriously bad. I begged my OB to give me meds as I was taking 1 bottle of Tums per week. (not kidding) She would deny me medicine and again..looking back, many would have treated me. (I'll explain more later about my past OB)

  • I was always thirsty. I'm talking seriously thirsty. I would drink 'a river' everyday. I had to go to the bathroom up to 30x a day. If not more. Nighttime was a nightmare. I got zero sleep as the heartburn combined with frequent urination was killing me. I was utterly miserable during my pregnancy.

  • YES! YES! YES! I felt Luke move in the womb constantly. I get asked this question all the time. He was a kicker! He kicked me constantly and the only thing I can remember about decreased movement was more in the last 3 weeks. He was so large and my womb was only so big. He literally was 'stuffed' in my womb towards the end. HENCE, the positional contractures. ****Interestingly enough, our Mayo Neurologist asked if Luke could always kick his legs post birth. YES! He's always been able to kick his legs. (so, we are thinking his legs were the kicking I felt instead of arms? We just have no clue?)

  • I had 1 sonogram at 17 weeks and 1 sonogram at 23 weeks. The sonogram at 23 weeks was because I kept feeling a tightness in my chest and it was very scary. All turned out 'normal' and nothing was flagged.

  • Thanksgiving was rounding the corner and Luke was originally due on Dec. 7th. I was so miserable that my OB said we would induce on Nov. 21st. My current OB told me that she never would have induced Luke at 37.5 weeks gestation as little boys need more lung growing time. She was right! Luke had to be intubated immediately. (*being an IDM child did not help)

  • My OB induced me as scheduled on Nov. 21st and and Luke was born at 7pm (ish) that night via C-section. He was immediately intubated.

The remainder of Luke's story is on the link called: Luke's birth story

Here are the pictures of me right before delivery--as you can see..I was huge and Luke was turning my stomach sideways.

It's important to note that my OBGYN during Luke's delivery 'fled the scene'. She never checked on me when Luke went into the NICU but 1 time and that was within 12 hours of his birth. I went back 2x for follow c-section questions and concerns and she was conveniently "out of the office". I was forced to switch OBGYN's when Luke was 1 month old.
I later found out that she has a history of neglecting her patients and has been in 3 civil lawsuits that we know of.