Tuesday, December 25, 2007

Alex's first chirstmas

I have taken one picture of the boys. I let them decorate the tree. I have no Christmas spirit. I just want it over, and the tree down. Christmas Eve was spent getting an RSV shot. This is not what I had hoped for.
I sitll havent old anyone about RTS. I still dont believe it. I know it, but I dont believe it.
I love this boys so much, I want to share him with the world.

Sunday, December 23, 2007

My Child

Please ask me about my child, the one that has been through so much. He has special needs, and life right now is rough. I wont be offended with the questions that you have, it hurts more when you keep silent, and pretend he doesnt exist. I need to talk about him, and know that we have been missed.-Jessica Pruitt
(Inspired from the writings of Emily Dent)

Saturday, December 1, 2007

pretty poems

There is this poem written about being a mom to a special needs child called Welcome to Holland. It makes all this seem pretty, and happy. What is pretty? the tubes, the therapy. What is happy the doctor visits, his pain? This isn't Holland its hell.

Tuesday, November 27, 2007

Cheri

Two days ago we got out of the hospital.
Today we went to Koke Mill medical center to see a speech therapist. Our pediatrician recommended her and said she focused on getting babies off of feeding tubes.

She walked into the room and peace followed her. She asked me the question, the question no one has asked me since Alex was born. How are you doing? I couldn't answer her without completely breaking down, so I told her I couldn't answer, and just wanted to move on with our appt.
She held Alex, knew how to hold him to help control his reflux, it was like magic. I haven't seen anyone look at him with such love. He smiled at her, so I think he likes her too.

Saturday, November 24, 2007

November 24, 2007

Our first thanksgiving with Alex in the hospital. I cant think of much to be thankful for. Adam stayed with the older boys to keep things as normal as possible for them. I sat here in our hospital room with Alex. No one has called, visited this entire time. This is so isolating. I am so angry right now. Do people really believe I want to be left alone? I'm too tired to reach out, I'm to angry. I cant live in hospitals anymore. I have two other boys that I have not spent any quality time with since August.
I'm screaming out to God for help, but I do not hear him, see him.
I look out the window of this hospital room and I am so envious of the people walking past, driving by. Going on with their normal lives. I am froze in this hospital room. No answers, and no more hope.

Tuesday, November 20, 2007

November 20, 2007

Alex didn't seem right today. Fussy, and then he started to grunt, then the fever. I called the doctor, and they almost told me just to watch him, but I knew things weren't right. Its funny a few days ago I had this feeling things were about to go wrong.
We have been admitted to the hospital with pneumonia. They think that Alex has been silently aspirating his bottles. Exactly one month ago we came home from the NICU, things were supposed to get better.
Where is God? I honestly don't know anymore. How can He let this 2 month old baby suffer like this. I'm tired of praying, hoping, believing. Where is He?

Monday, November 5, 2007

November 5, 2007

Everyday seems to flow right into the next. Bottle feed, tube feed, I want just simple baby time.
Where did all my friends go?
Everything has changed. I was just supposed to have a baby and come home. My entire life changed in an instant, and no one sees it.

Tuesday, October 30, 2007

October 30, 2007

I'm so thankful to be home, but the truth is I felt safe int he NICU. Everything is about medicine there. Now that I'm home the reality of how abnormal things are drowns me. I should be showing Alex off, but I feel like hiding away. I have never felt more alone. No one knows about RTS. I'm not sure why I don't want to tell anyone, I guess denial that it is real. He seems so perfect to me.
Everyone is living their normal lives around me, the world just keeps on spinning. My life has stopped, I am stuck, scared, and no one knows it.
This is bigger than I thought.

Sunday, October 21, 2007

October 21, 2007

We are home!!!!! We arrived with our bundle of joy 6 weeks, and one day later than planned, but we are home. We give God the glory for bringing us this far, and know He will continue to get us through the next steps ahead. Alex has about 7 follow up appointments from now until January, so we will be vistiting our first home at Cardinal Glennon alot in the next few weeks. We are so thankful to be home, Alex has been sleeping much deeper than he ever has, and continues to eat better and better, we know that soon we can throw the feeding tube away, keep praying for us.

Saturday, October 20, 2007

Top 10 medical issues with RTS

At the 1998 conference, recommendations were made of what medical examinations needed to be done after a diagnosis of RTS is given. The following areas were covered: (Remember not every child will have every issue, these are just issues to be aware of, and I repeat your child will NOT have all of these issues.)1. Undescended testicles in the males - orchipexy should be done as soon as possible.


2. Kidney & bladder tests should be done to check for reflux or any defects.
3. An MRI for Tethered Spinal Cord is now recommended. An Ultrasound may be done before one year of age. New advances with the MRI allow them to see the spinal cord move during the MRI, creating a better picture. If any parent should notice complaints from their older child on leg aches, regression in bowel/bladder control, more walking difficulties, they should consult with pediatric orthopedics to have an MRI if one has not been done in the past to check for the Tethered Spinal Cord.
4. Onset of puberty and growth also can make the orthopedic problems of walking, scoliosis, knee problems, and hip problems worse.
5. A complete cardiac exam needs to be done as well as pulmonary tests.

6. Anytime surgery or anesthetics will need to be used, an Anesthesia Consult is recommended because of possible tracheal collapse, cardiac arrhythmias, or refluxing.
7. An eye exam is recommended at birth and regularly from there on by a pediatric ophthalmologist because of the high frequency of eye problems in RTS.
8. Pediatric Dental visits need to be started as early as possible.
9. If GE reflux is present or suspected, tests should be done to determine the extent of problem. It is recommended to have a PH test done, an endoscopy, & testing for the reflux and associated esophagitis.
10. Corrections should be done to alleviate the problems with the thumbs and toes, depending on the extent of the defect and how the child can use them without surgery.

Copyright © 2006 Special Friends Foundation -- All Rights Reserved

Thursday, October 18, 2007

October 18, 2007

Things have been going well over the past couple of days. In the last day Alex has started to more consistently eat more on his own. If this trend continues then it is very likely that Alex will be coming home soon. Jessica and I will have to learn how to put his feeding tube in and learn how to run the machine that delivers the food via that tube. We got strict orders to get flu shots, which Jessica and I have received already and Noah and Joel will have done in the next week. We've already been through this once but we have to get the house cleaned and ready to bring Alex home. I'll let everyone know once he is home! Hopefully that will be one of the next couple of updates I do.

Monday, October 15, 2007

October 15, 2007

Alex has a UTI. :-( They started treatment for it yesterday. He has to get 1 shot a day for 5 days.
At 1st they thought they would have to put a direct line back into his neck in order to administer the medication. Jessica was very upset yesterday when they thought they would need to put the picc line back in. She sat and watched the last time they had to put one in and it took three hours and three different nurse practitioners to get it in. Alex's nurse called me yesterday and said I better drive down and sit with Jessica, she was falling apart, but is doing better now.They also thought that they would need to do it for 10 days. You can imagine how relieved we were to know that they would not have to put the direct line back in and that it would only be 5 days. He has been doing ok with his eating but not quite as well as Jess and I would like to see him do. He'll get there though. Seems the longer this goes the more mentally draining it is. We are holding in there and we know that it won't be much longer.

Friday, October 12, 2007

October 12, 2007

Just got back home from visiting Alex tonight with Noah and Joel. It was the 1st time that they have ever really seen their brother without all the tubes and machines. Sorry I have not updated in a few days but I have added a few new pictures. Everything is going well. Alex has remained off of the breathing machines and his breathing is doing great without them. He had a fever this morning and it was believed to be caused by a Urinary Tract Infection. They did do a spinal tap just to be sure it was not caused by something more serious. Common operating procedure for babies under 6 weeks old with a high fever I guess.
He had no fever tonight and seemed to be doing well. When we got there it was feeding time so Jessica gave him a bottle. He ate pretty good while we were there but then they finished off the bottle by giving it to him through his feeding tube. They want him to eat approximately 75 ml of milk on his own through a bottle. He has normally been taking around 10 ml from the bottle. But after the boys and I left tonight Jessica called and told me that he ate 25 ml from the bottle around 9 pm. We're thinking that he finally decided to give this eating thing a good shot. Once he is taking in the right amount of milk he should be able to come home. If his overnight and morning feedings continue to improve I will definitely let everyone know tomorrow.

Tuesday, October 9, 2007

October 9, 2007

AWESOME NEWS EVERYONE!!!! Alex is no longer using the nasal cannula. He does not require any more breathing assistance. This is a huge victory! I cant believe how far he has come.
Our last obstacle is eating.
He is being given Pepcid for the acid reflux but it will take a couple of days still to see the full effect of this medicine. They have also been thickening the milk which has helped a little. His sucking reflex is getting stronger too so it is all just a matter of time before he masters eating as well. And before I know it I will have 3 teenage boys in my house eating me out of house and home. I'll keep you all updated on how the eating goes.

Monday, October 8, 2007

October 8, 2007

The latest update is that Alex is still on the nasal cannual. However, he is breathing the same amount of oxygen as you and I are. The amount of flow through the nasal cannula is 1 liter. I don't really know what 1 liter means but I do the next step down is 1/2 a liter and then a 1/4 of a liter. So he is very close to being off of the breathing equipment. He has ran into a little trouble with the eating. Seems he has acid reflux and it is making things a bit difficult. Today the doctors will decide if Alex should be given Pepcid or some other drug to treat the acid reflux to make it easier to eat.

Thursday, October 4, 2007

October 4, 2007

Alex has been eating milk! A little at a time, like 5cc's but Jessica tells me that he is doing well. This is excellent news but it makes it even harder for Jessica to leave him in St. Louis to come home and be with Noah and Joel and get some rest. She is on her way home tonight and will get to spend the day with both boys tomorrow since they have the day off from school. Alex is still on the nasal cannula but they keep slowly turning down the amount of gases they are giving to him. He keeps maintaining the same stats when they turn them down. Slowly but surely he is working his way towards coming home. Jessica and I are both so proud of him and the great progress he has made.

Wednesday, October 3, 2007

October 3, 2007

Alex has been moved into a crib instead of a special monitoring bed. He is still on the nasal cannula but they have been reducing the levels of oxygen they have been giving him and he has been holding steady. Jessica was able to get him to suck on her finger for about 30 minutes yesterday and then he would suck on a pacifier. Today they are going to try feeding him milk! Remember that in his 3 weeks he has not had milk, only TPN. Jessica has also been able to hold him a few times since the surgery. Things are going great. Jessica and I are really thinking that he will be able to come home soon. Only steps we have are getting him to breathe on his own without the nasal cannula and eat on his own.

Sunday, September 30, 2007

september 30, 2007

Jessica and I went down to see Alex today.
Jessica will probably be staying with him most of the week.
I told her that she should become a nurse after this is all over. She does a great job!
Alex was doing well but a little grumpy today. I would be too if I just had surgery two days ago. He has had a bowel movement and peed since the surgery which are both good signs. They also took him back off of the ventilator this morning. He had to be back on it for surgery.
I sent Jessica with a digital camera so hopefully later this week we will get some new pictures to put up on the carepage. This week should be full of resting and healing.
Hopefully Alex will be able to start having milk as well. I'll be sure to keep you all updated on how things go this week.
Everyone has been so helpful and wanting to do anything for us to help out. I jokingly respond that the one thing that could be done for me is to go to work for me. Honestly though, prayers are that one thing. The biggest and best thing that can be done for Alex right now are prayers. And throw in one for Noah and Joel too. I know it has been hard for them to go for long periods without their mommy. Thank you everyone! Your prayers are such a great part of a strong foundation for our family right now.

Saturday, September 29, 2007

September 29, 2007

Alex went through surgery yesterday like a champ! The malrotation has been corrected and while inside they also removed a urachal cyst from the bladder. They thought that the cyst might be there but were not sure until they got inside. This was most likely the cause of the cyst on the umbilical cord. They also fixed up his belly button. It turned out to be a 3 in 1 surgery. He's going to recover for a few days and hopefully start eating soon, he has had no milk in his belly since he was born! For three weeks! It was a great day and I am so thankful that Gods hand was thereguiding the hands of the surgeons

Thursday, September 27, 2007

September 27, 2007

On my way home from the NICU this afternoon the doctor called and said that Alex will be having surgery to fix the malrotation of his intestines tomorow, early afternoon. This is great news because it means he is strong enough to tolerate the major surgery.They also did an ultrasound of his spine and think that it is teathered. This will mean another major surgery, but not until Alex is at least 10 lbs, and maybe not even until he is a year old.
I was planning on spending the day with Noah and Joel, but I will be headed back first thing in the morning to be by Alex. I am thankful that we are one step closer to bringing him home, and believe that the surgery will go as planned.

Tuesday, September 25, 2007

September 25, 2007

Alex and Jessica had a great time today. Jessica has been able to hold him a couple of times and she gave him a sponge bath and washed his hair. Any X-rays and blood gases that have been taken are good. He is still on the nasal cannula but they have been reducing the amount of oxygen that they are delivering through it. As everything contiues to go well tonight the doctor would like to start looking at the malrotation of the intestines tomorrow. It should all be preliminary stuff in order to prepare for the eventual surgery to correct it. It has been an outstanding day. Thanks for checking in and most importantly thank you for your genuine prayer and concern for our baby boy.

Monday, September 24, 2007

September 24, 2007

All is going well in St. Louis. Around 2:00 pm today they took Alex off of the ventilator. They did the camera scope and found nothing out of the ordinary. The 1st check of the blood gases after this all was done came back with great results. He is getting oxygen through what is called a "nasal cannula". If you do a Google image search on that you will see that it is much less invasive. He was a little grumpy after all of the procedures so Jessica asked if she could hold him and he calmed right down. It has been an awesome day for Alex full of answered prayers.

Friday, September 21, 2007

September 21, 2007

Alex is back on the ventilator this morning. :-( I will be awaiting info from Jessica this afternoon. She is expecting to hear from the Doctor doing rounds this morning at about noon. I also informed Jessica last night that she cannot come home. Noah got sick last night and was throwing up. She has to stay away from the sickness because I do not want her taking it back to the hospital with her. She understands but I think she is getting a little home sick. She also had to watch Alex be intubated last night.
UPDATE......I spoke with Jessica a few moments ago and even though Alex is back on the ventilator she was able to hold him for about an hour! I was so excited to hear this. It was exactly two weeks until she was able to hold him. She said that it is quite an ordeal to get him out of the bed and into her arms because of the tubes and other devices connected to him. She also said that he loved it. He looked at her for a little bit and went right to sleep. On Monday the doctors are planning on sending a small camera through his mouth and down towards the lungs to see if there is some sort of blockage or constriction, etc . . . which would be causing the breathing problems. Last X-ray showed that the pulminary hypertension was gone so this is the next step to determining the issue. I know that a lot of you were praying that Jessica would be able to hold him and that came true today. Please pray over the weekend and thank God for his healing hand in Alex's life.

Thursday, September 20, 2007

September 20, 2007

Alex is back off of the ventilator! He is breathing on his own again. The nurses brought a rocking chair into the room, but Jessica has not been able to use it yet. You know that means the time to hold him will come very soon. Jessica had the option to go to the Joyce Meyer convention in St. Louis tonight and see T.D. Jakes speak. I am glad to report that she took that opportunity. It'll be good for her to her an uplifting message. The doctors are still monitoring the levels of oxygen and carbon dioxide in his blood to ensure that all is going well. At last check around 5:30 it was. They were doing another check tonight at 9:00. I pray that this upward swing continues and we will be able to hold and embrace Alex very, very soon.

UPDATE......Jessica was on her way back to the hospital after the conference and called to check on Alex. They told her that he was having trouble breathing on his own again and that his blood oxygen level had dropped to around 60%. They were thinking about putting him back on the C-PAP machine. We are both saddened by this but will not give up hope. We know Alex is a strong boy and a fighter. Gods hand will heal him and take any sickness away. "Reckless words pierce like a sword, but the tongue of the wise brings healing." Proverbs 12:18

Wednesday, September 19, 2007

September 19, 2007

Alex did wonderful throughout last night and today. Even though he is back on the ventilator the Doctors and Jessica think it is the best thing for him right now. Since he has been on the ventilator and they were able to suction the gunk out of his lungs he has been improving hour by hour. His blood oxygen levels have been great and the carbon dioxide levels in his blood have been perfect. Jessica is back in St. Louis keeping a close eye on him tonight. They are slowly going through the process of weaning him off of the ventilator again. He has been a little agitated by the tube in his mouth and has been chewing on it. Doctors believe that is because he has been coming off of some pain meds. All in all things have been going very well for him in the last 24 hours. There is no way for me to tell everyone just how very thankful I am to you all. I know that God will bless each and everyone of you for keeping my son in your prayers. I have also been overwhelmed by everyones generosity. THANK YOU ALL!

Tuesday, September 18, 2007

September 18, 2007

Well last night and throughout this morning Alex had some trouble breathing. He was put back on the CPAP (Continuous positive airway pressure) first where he still pretty much breathes on his own and then it was decided to put him back on the ventilator. He has had some gunk in his lungs and after he was put back on the ventilator they were able to suction a lot of it out. It has been sent off for testing to see what it is. Most likely it is there from an infection or just congestion. Doctors are pretty sure that it is not an infection because he has been on antibiotics since he arrived there. It's just going to take a little more time before Alex is ready to breathe on his own for good.

Monday, September 17, 2007

September 17, 2007

Alex is still doing good. The doctors started him on steroids yesterday to give his lungs a boost. The amount of carbon dioxide in his blood is still a little high. Doctors like it to be in the 40's and he is currently at 61%. That is the best level that it has been at so far though. He has also been off of the breathing machines for over 2 days now. Alex is so thankful for all of your prayers! Jessica is still longing for the day she gets to finally hold her son. I know that day is coming real soon.

Saturday, September 15, 2007

September 15, 2007

Just spoke with Jessica and she said that the Dr. is preparing to take the breathing tubes out in about 30 minutes. Please pray that the removal of the tubes will be successful.......
UPDATE:
Just wanted to let everyone know that Alex is off of the breathing machine. He still has a tube in his nose (cpap) to provide him with pressure to the lungs. His blood oxygen levels have been good but the doctors were slightly concerned with the amount of carbon dioxide in the blood. It seems as though it is not getting expelled like it should be. Alex has made a tremedous step! Let's pray that the carbon dioxide levels go down so he can stay off of the machines for good.

Friday, September 14, 2007

September 14, 2007

Things are going great for Alex today. At last check with Jessica he is down to 35% oxygen and they are taking him off of the pain meds. She has been told that he should be off of the machines this weekend sometime. I know that she is hoping to get to hold him in the next day or so. The tests came back on the umbilical cord cyst and they said it was only a cyst. It was not filled with urine or any other internal fluid. It was only a cyst. Alex has been asleep since Jessica got there today around noon. He is resting up and getting healthy like a good boy. Today was also his 1 week birthday!

Wednesday, September 12, 2007

September 12, 2007

Last night around midnight Dr.Sadiq came in and because of all the great blood gases, and numbers decided to take Alex off the oscillator. It was a scary few moments, but Alex did great. He was put on the vent, and is slowly being weened from O2 and nitric oxide. Things are looking much better today.
The reduction of his oxygen level has been going well. At last check with Jessica he was down in the 70% range on oxygen. He was on a full 100%. They are still reducing his blood pressure medicine as well. All of his signs are stable. Jessica got the results back from a sonogram that was done on his heart and was told that everything look good. His heart was just working hard because of the Pulmonary Hypertension. I'm not sure many know but he also has a malrotation of the intestines. We were told today that he would need surgery before he eats any breast milk. So once he is breathing on his own that will be done. Thanks for the messages and virtual gifts. This care page has been very therapeutic for me. It's great to be able to spread the good news about my son!

Tuesday, September 11, 2007

September 11, 2007

Today is day number 5 for Alex. He is trying to move around and look at me. The pulmonary hypertension has not resolved so the doctors still want Alex to be sedated so he was given morphine to keep him still. His heart rate is still very high in the 170's, we need this to come down. Things seem to be improving little by little. He is still on the oscillator. Dr. Sadiq is on the floor tonight and his specialty is in pulmonary hypertension.

Monday, September 10, 2007

September 10, 2007


Today with all the new construction going on at the hospital the power went out in the NICU. With this Alex's oscillator shut off. This machine is very loud as its purpose is to almost shake the CO2 out of the body. Suddenly there was silence. I immediately jumped up screaming for help, his nurse was right there, bagged him, and he was fine. I however, threw a fit. This isn't supposed to happen, this is his life support. Some guys came in and hooked a back up generator to the oscillator. Shouldn't that be standard????
Things are fine now. Lets not do that again.

Sunday, September 9, 2007

September 9, 2007


Last night you flew to Cardinal Glennon. After we picked your brothers up from school we drove down to see you. I am going to stay. today they have opened a new NICU unit, and I can stay in your private room all the time. What a blessing! You still aren't well, your CO2 is high, and your Sat's are low even with the nitric oxide, and 100% O2.
You are on morphine so you are still. The oscillator machine is loud and shakes your body. You have ear muffs on to keep it quiet, can you hear me talking to you? Do you know I'm so close?
I love you Alex. I'm hear now.

Saturday, September 8, 2007

September 8, 2007

You are a day old, and you aren't well. You have been placed on an oscillator, and you continue to go down hill. Your intestines are malrotated and you will need surgery as soon as you are strong enough to tolerate the surgery. You have pulmonary hypertension, and you cant get enough oxygen to your blood. Your lungs are white, and your CO2 is climbing.
You have been flown to Cardinal Glennon in St,Louis in case you need ECMO.
I love you so much, and I want to hold you so desperately!

Friday, September 7, 2007

Happy birthday


You were born at 12:31 via c-section. You made a loud squeal when you were pulled out of me. Then I could tell that you were having trouble breathing. You were taken up to the NICU, and put under an O2 hood, but it doesn't seem to be working.
They put you on a vent, but you still aren't improving. The doctors say you have pulmonary hypertension. Your thumbs are angulated, but I think you are just perfect. i want to hold you , and nurse you. I love you Alex. Will you be ok?
We named you Alexander Jon.