Busy Busy...

The crazy chaotic life which is that of a CHD/trach/vent mommy. We have been busy lately, and getting to my laptop is pretty well impossible 99% of the time.

In BIG news.....

WE ARE PREGNANT!!           Baby 3 is on the way!!!

As excited as we are to be having anouther bundle (which better be my girl!), it is killing my nerves waiting on our fetal ECHO. I'm just praying for a heart healthy baby.

In BIG David news, his cardiology appointments are now every 6 months! Yep, 2 years of ICU life, less than 7 months at home, and already on 6 month visits!!! He is progressing so well.

He is up to 4 minute sprints off his ventilator! Now, 4 minutes may now sound like much, but for an almost 3 year old with BPD and pulmonary fibrosis, that has been on a ventilator since birth, 4 minutes may as well be 4 hours!! So, yea this is HUGE for David!

Now, in physical and occupational therapy, he is prop sitting for about 5 seconds at a time unsupported and interacting more with other children!! He now says HI, NO, and UH-HUH!!

With RSV/Cold/Flu season setting in he has been a bit sick lately. Sleepy and very mucus filled, but all in all he has been great!!

Little brother Tony is growing fast!

And has become quite the big helper (as seen filling bubbies humidifier lol!)

SO, this was my little update!

Lack of night nursing may have actually come in handy after all!!

(MAYBE I will get Davids Journey updated next....?? who knows!!)

Heather

Wearing clothes!!

Now, anyone with a baby who spent any amount of time in the NICU, knows how the very little things can be THE most exciting. Things like sucking on a pacci for the first time. Drinking from a breast or bottle for the first time. The first audible cry. Turning off the warmer bed.

Off the warmer!!

Finally wearing clothes

Sleeping in a crib

A face free of obstruction

Things that most new parents don't even consider a big deal, are huge milestones to a parent of a NICU baby. It will take David much longer than your average child to reach typical milestones. Like rolling, holding up head and neck, sitting unsupported, crawling, eating solids, using a sippy cup, walking,  etc. He is two years old and cant do any of those things. But I know that when David does do all these things, I will appreciate it in a way, that only a parent of a special child can!!!

Lets get on track.

The morning of Davids first OHS

I want to apologize for being so "jump aroundish" with my blog. So, I'm going to attempt to get things back on track.

David has not been in the hospital 2 years because he was "kinda sick". David, up until about 3 months ago was always critically ill. David has spent about 85% of his life sedated, and about 45% of his life paralyzed.

After Davids trache operation, we had a few good days, but that didn't last. David was on a drug called Prostiglandin (PGE1) from the moment he was born. The purpose of this drug was to keep his PDA (Patent Ductus Artery) open. Now in a healthy infant, or in another CHDer with non compatible defects, keeping the PDA open is life threatening. Its funny that this little duct is what Davids life depended on. David Interruption in his aortic arch did not allow blood flow to travel to his lower body. The PDA kinda "bypassed" that interruption. When David was about 3 weeks old, the PGE started to no longer be effective, and the ductus started to close. This was a BIG problem.

David went in for a heart catheterization when he was 42 days old and was scheduled for OHS at 48 days old on January 29th 2009. His lungs were getting flooded by blood because of the PDA being opened and it was really effecting his respiratory status. With the PDA narrowing it was restricting blood flow to his intestine and kidneys. David had absolutely no bowl sounds or movement for 8 days. He also was retaining fluid like crazy because of decreased kidney function.

At 7 am on the day of surgery, we handed our baby off to the surgeon, Dr. Kamal Pourmagadaum. The procedure he was having done was called a Hybrid. This consisted of placing bands around his pulmonary arteries to restrict blood flow to his lungs and placing a stint in the PDA to keep it open. Yes, David was born with Pulmonary artery stenosis, but they were not narrow enough to restrict flow sufficiently.

David also was born with a VSD and ASD, so his blood was mixing oxygenated and un-oxygenated. This was actually working to Davids advantage. They did not want him saturating above 75-80% because he would be over oxygenating his lungs seeing as though oxygenated blood should never enter the lungs. So in addition to the hybrid, during surgery they went in and actually made the VSD a bit bigger. This helped to bring his saturation's down with out the use of Nitric, which David had been on for 2 weeks.

The surgery sounded simple enough but when they started the banding part of  the procedure David went into cardiac arrest........for 48 minutes. The surgeon performed chest compressions for 22 minutes. His dedication to not letting David go, amazes me to this day. Most surgeons would have called time of death after a few minutes, but not our surgeon, 22 minutes with his hand in Davids chest pumping his heart until he could get it to start on its own. After the first 22 minutes Davids heart would sporadically stop and require compressions again.

During the surgery my husband and I were pulled from the waiting room into a smaller consultation room. When we walked in we saw the social worker and the chaplain sitting on the sofa. I started crying instantly. I thought they were going to tell me my baby was gone. Instead they told us about what had happened and told us that Dr. Pourmagadaum was pouring his own heart into keeping Davids heart pumping. They prepared us for the fact that David may not come back from the OR and then we sat and waited.

After about another 6 hours The OR nurse came and told us that David was stable yet critical and that he was on his way back from the OR. They had accomplished all they planned to do, now it was all on David.

Fresh out of the OR

It was after midnight before we were able to see David.

The doctors and nurses told us to be prepared. That David may not make it through the night.

That night was hard. His pressures dropped all through the night, he spiked temperatures several times and his heart rate shot up over 200 a few times that night.

Over the next few days David made slow progress, and actually recovered amazingly well :) Davids recovery lasted about 2 weeks, then he was moved back to the NICU. For about 2 weeks, things were going well. That again, didn't last.....................

Almost Home



Davids Birthday

  I will always remember the feeling I had, the first time I saw David after his birth. It was horrible seeing so many things covering his poor little body, me not knowing if he was in pain.



12 hours old

  All I could do was cry. I just kept thinking "Will he be ok?" and "Why him?"



After Transport



  The last two years have been hard on us all. Especially David. 

After Tracheotomy

  After many surgery's, " I don't knows ", sleepless nights, and being scared beyond belief numerous times. David is doing well.

After two years of hospital life, David is finally almost able to come home. We are set to be home next week. We have lived in hospital ICUs for two years, and I'm wondering how it will be at home. Will I know what to do? What if I mess up? Will he like it at home? Will my family be as supportive as they say they are going to be? I am ready for his homecoming, but a little nervous.

WELCOME "ALMOST" HOME DAVID

I'm ONE !!!!!!!!!!

MY FIRST BIRTHDAY!

 As Davids 2nd birthday is fast approaching, I feel compelled to share his first birthday. Davids birthday was not by any means a "typical" first birthday. It was celebrated in the PICU. He was just getting over a very nasty infection that had him on paralytics and sedation for 4 weeks, and he was still on a slow fentonyl drip. He was quite sleepy and a bit agitated that day, but he was still surrounded by many family and friends, and also by MANY doctors and nurses. The wonderful staff at the hospital threw David a "surprise" party, all though the surprise was really more for me and my husband! We walked in that morning to find balloons all over Davids room, cards from staff, and a beautiful cake and ice cream on his counter. I cried! They didn't have to do this, how selfless of them all to try and make Davids day as "normal" and a special a day as possible. The staff made that day so special.

Me and my husbands favorite part of that day was the look on Davids face when he got his very first taste of any thing other than calcium, and neo-sweet. I was so surprised when the doctor told me to give David a taste of the icing. His cleft pallet allows food to get into his airway, and it can get into his lungs. Being vent dependant on top of that has never allowed David to eat by mouth.The look on his face was priceless. His lips smacked, his tongue rolled, and every time my hand went back towards his face with more he practically DOVE to my finger! He enjoyed it so much. The staff at the hospital had gotten him a few gifts. A couple blankets, t-shirts, and a stuffed toy or two. The staff there is what got us through that day smiling. We were so devastated that our little miracle had to celebrate his birthday in the hospital. We quickly came to realize that no matter where we celebrated with David, we were just grateful to have him here to celebrate with.

David had dozens of gifts from our family, I had the bright idea to have David "open" all his gifts, its just not the same if we open them for him. This look about 5 hours! He has very little reserve so after about 10 minutes of opening gifts he would get mad and take about a 20 minute nap and then be ready to go again.! Like most children, Davids favorite gift that day was the packaging! He fell in love with a bundle of colorful ribbon and actually slept with it that night. We tried taking it, but he wasn't having that! We had a wonderful day, David smiled and laughed soooo much that day and that was all I needed. So after cake, ice cream, and opening gifts, we ordered a pizza and watched Finding Nemo!!!!!!

The best birthday party I ever attended was HANDS DOWN my Little warrior Davids first birthday celebrated in the PICU! How strange will that sound to the "average" person? It was a wonderful day full of laughter and wonderful memories, and a couple new experiences for David!

My first Taste of "real" food!

David will be two years old on December 19th! I'm praying we will have him home for his birthday, but If we have to celebrate in the PICU again, that will be OK. We will be together, as a family, celebrating two years of life for a child whom we were told wouldn't make it past 5 months! Watching him laugh and smile, making sure it is a day like no other!!!!!

My favorite present!!!!

Messy face! :)



To cute huh?



My banner!!

The cake the staff got me!!

A Breath of Fresh Air

I left of watching my baby begin driven away from me, off into the blinding snow. Me and my husband followed the ambulance as far as we could but eventually went our separate ways. I was so devastated. I couldn't wait for the morning, for the roads to be clear for the drive down. We went to my mothers for a while and talked about David for hours before finally heading home to pack our bags and get some sleep for our trip the next morning.

At around 8:30 the morning of December 20th we left, the 2 1/2 hour drive seemed to last a lifetime but we finally arrived at the hospital. I was so excited to finally be with my son but nervous at what the doctors may tell me. When we got into the NICU I was so relieved. He looked wonderful. He was awake and looked so happy. Even through the breathing tube and all the IVs he seemed just perfect. I just didn't understand how he could look so amazing but be so sick. The nurses talked to us about Davids night and said that for the most part he had a great night. But at one point during the night his breathing tube came out, they left it out to see how he did, but it only lasted a few minutes. He stopped breathing and almost fell into cardiac arrest. They ran into the same problem as the transport team did, his breathing tube would not go into his airway.

The doctors came out a short while later and explained to us that Davids chin was severely receded and that it was causing his tongue to press against his airway, almost closing it off entirely. They then started talking about a Tracheotomy. This would give David a permanent and secure airway so that issues like this would not occur again. I was not to sure about this at first, but after a few days spent with David, I was quickly convinced. He was constantly tugging at his tube, I felt terrible always pulling his hand away, but I was so afraid of the tube coming out.

Finally on December 30th, at 11 days old, the day had come. My husband was at work, so an aunt and uncle came down to keep me calm during the surgery. His time ended up getting changed and he didn't make it to the OR till 3:00 pm. My aunt and uncle left hours before. he was originally scheduled to go at 8:00 am and they were not able to stay. So there it was, David and I, waiting. I cried while holding his tiny body against mine, praying to god to keep him safe and bring him back to me.

I didn't want to let him go when the OR team came for him, but eventually the nurse talked me into placing him back in his bed. I gave him one last kiss and whispered "I will see you soon baby, Mommy loves you." and he was gone. I went to the waiting room and tried my best to rest, but I was to nervous. Eventually one of the NICU nurses came out to check on me and noticed I was very upset. She called the chaplain to come talk to me. He helped me out so much, more than he may ever know. Before I knew it 3 hours had gone by and the ENT surgeon came to talk to me. David did GREAT! Not an issue at all! Praise the LORD! She said that the incision was clean and nice, and the trache tube went in without a problem. She told me it would be about another 30 minutes for the nurses to settle him in, but then I could go see him!

I COULD SEE HIS FACE!! All of it, he was so handsome! He had a bit of swelling, and 4 bits of string taped to his chest, in case the trache came out, these would be used to hold the stoma open until they got a new trache in. After a week the strings would be removed because the site would be healed enough that we wouldnt have to worry about getting anouther trache tube in easily. I was not able to hold him but to kiss his cheeks was wonderful. Awwww the simple things. We now had a secure airway. No more worries about his tube falling out!

Our first surgery done and over. Little did we know it would be the first of many. But, for the time, things where good. We had a safe airway, a true breath of fresh air!

Our new airway!

Here comes David!

Davids premature birth I guess you can say was "expected". I had an excess amount of fluid during pregnancy that put me at risk for preterm labor. When I was about 28 weeks pregnant I starting having a lot of issues with not feeling David move, and having mild contractions. After several doctors visits and hours on a fetal monitor, which did determine that David was moving I could just not feel it, we were sent for an ultra sound. The doctors where concerned with my size, I was VERY big for 28 weeks, but we found out, it was just extra water! This explained why I couldn't feel David move, he was swimming! It also had me placed on bed rest, but they allowed me to rest at home.

Selfishly one day I decided I was sick of staying at home and begged my husband to take me to the park near the river where we live so I could feed the ducks. All was fine until we were about to leave and I was walking to the garbage can to throw away the bread wrapper.  At 2:50 pm on December 19th, my water broke! My husband rushed me to the hospital where they confirmed my water had in dead broke. I was 33 weeks and our local hospital has no NICU, so they got me ready for the ambulance ride to the hospital where David would be born.

I remember crying so hard, I was so scared for my baby. I kept saying he isn't ready, he is to little, he needs more time. Well, David had plans of his own! After a 20 minute ride we reached the hospital. The nurses where gentle and understanding and for that I will forever be grateful I was so afraid for my baby boy.

They immediately started me on Pitocin to increase my contraction frequency and strength. After 12 hours our handsome baby boy made his debut, weighing 3 lbs 13 oz and measuring 16 1/2 inches long! He was beautiful. The nurses took him and cleaned him up and allowed me and my husband to give him a quick kiss and they raced him to the NICU for evaluation.

After a 6 hour wait the doctor and a nurse entered my room, looking nervous. Me and my husband glanced at one anouther and I started to cry. They explained to us that David was born with a CHD. Wait, what? No not my son, sure he is small but other wise healthy, they must be mistaken. Unfortunatly, I was the one mistaken. They explained that Davids heart had several defects, but didnt give us details. All we knew for sure is that within the next few hours a transport team would be arriving from a childrens hospital to take our baby away for long term treatment.

Not exactly what a first time parent expects to hear. We both fell apart. My husband called our familys and gave them the news. About 30 minuites after the talk with the doctor they finally let us go see our son. It was such a horrific yet glorious sight. So many lines and tubes. He was on a ventilator to help his tiny underdeveloped lungs breath, so we couldnt even see his entire face. My tears turned to smiles when the nurse said "Do you want to hold him?" OF COARSE! It was the most amazing feeling in the world but it at the same time broke my heart. My helpless little bundle of joy was so sick. Was he in pain? Why couldnt they fix his heart here, now, TODAY? I just wanted to never let him go. Me and my husband took turns holding him and where then asked to leave as the transport team had arrived, and needed to get him ready to go.

I told the hospital staff I would be leaving the moment he did, and to my surprise, they did not argue. I went to my room changed my clothes and my husband took my things to the car. I then eagerly went back to the NICU to wait for my son to be ready for us to leave. I was then informed that I would not be able to travel with David in the ambulance. My heart sunk again. I wasnt ready to hand my child over to complete strangers. It was to much to ask of a new mother.

My concerns quickly went from Davids trip to David well being. The transport team had to change the type of breathing tube on David to a full intubation tube and they could not get it into his airway. He went into cardiac arrest. My heart stopped beating with his, he was blue and completley limp. Please GOD dont take him away, give HIM a chance.

The team finally got the tube in and after a few chest compressions, he was pink again! THANK YOU LORD. At only 12 hours old my sweet innocent baby was ready to go, more than 120 miles away, to the hospital that would fix his broken heart.

The day David was born we had a terrible snow storm. The tires on our car where bald, and it had numerous other problems. We would not be able to follow our son, not be able to make the trip with him at all, if even just to follow. Me and my husband stood there helpless in the snow and watched a team of strangers drive of with our son, take him away, into the blinding white snow.