The Rest of Our Story (so far)

Okay, so we left off with Michael's staph infection. He came home and stayed (finally!!). We had a wonderful Easter

Michael's big brother, Ben, just LOVES him!

Michael had several more echocardiograms. However, this one stands out in my mind. (Pic taken during echo on May 3rd)

This was the day we found out Michael's valve wasn't working properly. Dr. D told us that he needed a balloon procedure to try to knock loose some blockage that formed around his valve. They do this by using a cathedar through the groin and weaving it up to his pulmonary valve. They then take a balloon and blow it up. He had this procedure on July 29th. We got to Children's at 5:30 am. This is a picture of Michael sleeping on me before they took him away.

We waited as our son was in surgery. This was a banner hanging up in the lobby. I found it extremely comforting.

They finished his surgery at 8:52 am and Dr. D came to talk to us at 9:15 am. He told us that he ballooned Michael's valve as much as he could but it didn't work. His valve is growing back closed and so Dr. D wanted to monitor him every two to three months for six months or so. We were informed that ballooning would not work for Michael anymore. In other words, his only other option is more open heart surgery. Worst news we could have gotten. After another hour or so we finally got to see our little boy.

Luckily this time it was only an overnight hospital stay. Over the past 10 months, Michael has been through so much. Open heart surgery, staph infection, a balloon procedure, countless echocardiograms, and many days and nights in the hospital. I am very happy to report that he has not been in the hospital since his last procedure. He has over come so much. He rolls over, pulls himself to standing, sits up by himself, and even started saying "mama" on Christmas. I am so very proud of him and even though he has been through so much, I am SO thankful. His condition could be so much worse and oddly I find comfort in that. He's growing up and one day he will be normal except for his scar on his chest. His scar is a constant reminder to me of how precious life is and how blessed I am to still have my baby boy. The doctors and nurses at Children's saved his life and I can never express how thankful I am to them. Without them, my little boy wouldn't be here today, much less be getting better.

That's right, MY LITTLE BOY IS GETTING BETTER!! He had an echo on January 3rd and the balloon procedure is actually working!! The pressures in his heart are going down. I have more confidence now that he can wait until he's 5 or 6 before needing another surgery (yes, he will need more surgery eventually). Thank you all for your love, support and prayers. I love and am thankful for each and every one of you. GOD BLESS!!

Michael's Second Hospital Stay

So, I'm going to continue our story where we left off. Michael came home March 14th from his first hospital stay. On March 20th, he was inconsolable. He cried, and cried, and cried.... I made the observation that he didn't even cry this much when he was in the hospital getting poked and pricked left and right. I knew something had to be wrong. I checked his incision and he had yellowish, redish drainage oozing from it (kinda gross really). We took him to the ER at Children's.
When we got there, we checked in and told them what was going on. After about half an hour or so, they came and got us and took us to a room off of the waiting room. They didn't want Michael in the waiting room with all the sick kids since he had "an open sore". We waited for several hours but we eventually got into a room. They swabbed Michael's incision to test it for infection and traced around the redness. The doctor said that it was definitely infected without running any tests. They told us that he would need to be readmitted for IV antibiotics. Michael wasn't even a month old. This is what his incision looked like at this point (caution it's not too pretty):

The nurses started trying to find a good vein to put in an IV. My poor baby had been poked and pricked so many times that they couldn't find ANYWHERE to put an IV. They asked me if I opposed to putting the IV in his head. I told them it was fine if it was the only other place. And so....

They put it in his head... Once they got the IV in and all set they took us up to our room. This is what Michael looked like at his point:

He ended up having a staph infection. As if having a baby who had open heart surgery less than a month ago wasn't enough of a nightmare, my sweet baby boy now had a staph infection. I never knew my heart could take so much pain in such a short amount of time. 

Over the course of 9 days, Michael slowly got better. The IV in his head failed after a couple days of antibiotics and so the poking and pricking to put in a new IV began all over again. I'm very happy to say that they didn't put it in his head again. This is what his incision looked like after his antibiotics:

Much better!!!! Michael finally came home on March 29th. We were all so happy to have him home. 

Alas, I am out of time for now. I will finish updating our story when I can. Thank you all for reading!!

Michael's Life So Far

On February 21, 2011, my entire world got flipped upside down. I went into the maternity center at 7am to get induced. I had a fairly easy labor except I got so nauseous even nausea meds didn't help and my epidural was stronger on my left side. At 3:30pm, the nurses had me start pushing (before my doctor even got there). After about three pushes, they said (in mid push), "okay okay! Let's wait for the doctor!" My doctor got there about 5 minutes later and another three pushes later Michael Joseph Jones was born. He was born at 4pm, 6lbs 12.4oz, 20.5 inches long, and he was so beautiful! My wonderful mother dragged my step dad and brothers all the way up from Alabama so she could be here for the big day. She helped me with everything and I never dreamt of how much I would need her during Michael's first days of life. She cut his cord and they laid him on my tummy while they cleaned him up. It was love at first sight. They took him away and did the usual newborn screens but they never wrapped him up and brought him back to me. His forehead was blue (the nurses called it a bruise but I knew better). He wasn't crying like they wanted and my motherly intuition told me something wasn't 

right. After about 10 minutes, they took him away to the NICU.

After a couple hours of not seeing my baby, I finally got to go see him. I stayed in the NICU with him for a while. They did his first echocardiogram of many to come. The lady who did the echo wasn't allowed to tell parents what they find so my husband and I sat there for 30 minutes while she took pictures of his heart. Finally, a doctor came in during the echo and told us that the anatomy of his heart wasn't right. They sent the pictures to the children's hospital and a cardiologist finally gave him the diagnosis of pulmonary atresia with intact ventricular septum (PA/IVS) the cause of which is still unknown. They then told us he needed to be transferred to the children's hospital immediately. They let me hold him one last time and even took pictures for us.

I had the hospital call my doctor so I could leave with Michael. He said he didn't see why I needed to stay so he cleared me for discharge 4 hours postpartum. The transport team took Michael at 8pm. After he was gone I was told that I had to wait for a rhogam shot and it would take an hour and a half for it to be prepared. 4 hours later we were still waiting. I finally got my shot at 12:15am and was discharged. I only got to hold my little boy twice during his first day of life.

My husband, mom, and I got to the children's hospital at 1am. We still were not allowed to see him. I was prepared to sit in the waiting room all night if I had to, but my mom and husband told me I needed sleep so we went home around 2am. I got maybe an hour of sleep that night and came back to the hospital at 6am and finally got to see my baby boy.

The following is the notes I kept throughout Michael's first stay in the hospital:

2/23- little Ben meets Michael

2/24- Michael's heart surgery:

-9:40am - took to surgery room

-10:51am - finished prep

-11:24am - made incision, cut sternum

-12:15pm - still in surgery, he is stable

-12:40pm - ready to close

-1:05pm - doctors report

-2:35pm - watching breathing

-2:56pm - putting breathing tube back in

-3:10pm - finally got to see Michael! Hardest thing I have ever seen

2/25- echocardiogram, family goes back to Alabama, my mom stayed with me through everything. I couldn't have made it without her

2/26- 4:50pm - got to hold Michael for the first time since his surgery, started phototherapy for jaundice

2/27- 12:30am took out breathing tube, did good for hour and a half, blood pressure and heart rate dropped so put it back in

2/28- echocardiogram, hubby's birthday

3/1- 6:30pm took out breathing tube, my sister flies home

3/2- took out IV in left foot, got to hold and bottle feed, put in crib

3/3- 7:30am drainage tube and pacer wires taken out, my birthday

3/4- echocardiogram, 5:30pm surgeon tells us they are going to turn off prostaglandins (he needed them when he was born to stay alive) and his heart looks better

3/5- 2:30am turned off prostaglandins

3/6- echocardiogram

3/7- echocardiogram

3/8- 6:15am breastfed for the first time, 9:00am UAC removed, feeding tube taken out

3/9- taken off constant monitoring

3/10- echocardiogram, 2:10pm dr says can go home in a week or so, 4:30pm moved out of NICU

3/13- dr says can go home tomorrow!

3/14- 5:30pm MICHAEL COMES HOME!!!

Michael was home for 6 days. He got a staph infection and had to go back to the hospital. I'll post more about that later. Out of time for now. Thank you all for the love and support through our hard time. I love you all!!

New Blog

Well, I decided that I wanted to start a blog for Michael. As some of you know, he's my precious heart baby. He was born on February 21, 2011 and he was diagnosed with pulmonary atresia with intact ventricular septum a few short hours later. On February 24, 2011, he had his first open heart surgery. He was 3 days old. Michael was in the PICU for a month. He came home for 6 days then was readmitted because he had a staph infection which ended up in another week and a half in the hospital. He had a balloon procedure done in July which determined his only option is open heart surgery.

Michael's Birthday

Day after his surgery

Fastforward to today. Michael is now 10 and a half months old and doing wonderful! He had an echocardiogram done on Tuesday (Jan 3rd). It showed that the pressures in his heart are getting lower. His cardiologist (Dr. D) said his heart looks great and that we could push back the next echo to 4 months. It was the best possible news we could hope for. MY BABY IS GETTING BETTER!!!!!!

Michael today