Pray for Dalton

WOW ITS BEEN A WHILE....

2011-01-12T21:01:00.000-08:00

Dalton is doing great! It is hard to tell that he was ever premature. He walks, he talks, he climbs, he jumps, he giggles and laughs and at night when we go to bed he raises his hand up real high and says "Thank You WORRRD (AKA LORD)"!

He is 2 1/2 now and weighs almost 40lbs, and is 36" tall and solid like a rock. I have to give thanks everytime I look at him because he is the greatest gift one could have in life. I know what people mean when they say "God blessed the broken road". Check out the clown costume....it turned out great!

HE WALKS!

2010-09-27T20:05:00.000-07:00

Dalton walked without his walker and hands free for the first time Friday Sept. 24, 2010! I am so proud of him! He can initiate his own steps and is heel striking with both feet. He gets so excited and gets off balance, but he is unstopable. God is so good, and my prayers have been answered. I have been looking for a costume for Dalton this year and have decided to go with a cute clown. After all he is always clowing.

Getting there slowly but surely!

2010-06-15T22:22:00.000-07:00

Dalton's botox procedure went well with no complications. It was not as bad as I had pictured it and I actualy look forward to the next injection and its benefits. Dalton is the big 2 now and in to every thing :)O. He has graduated out of the infant class at school and just in the few weeks he has been with the big boys his development has changed so much. I am having to learn that I can't always protect him and that trial and error is the only way he will learn. His speech has improved and he is trying to mimic sounds and words more than before. He absolutely loves his Maggie Dog (our Yellow Lab), and goes to the door now and yells for her. I am so desperate to talk with other parents who are experienced and educated in Dalton's type of CP. It is difficult to find kido's that are effected the same way, and my urge to understand what life is going to be like for him is growing more and more. This comes with the daily reminder that this is a life-long condition and that the obstacles have just begun for him. We have seen all of the specialists, we have all of the therapy possible, we get the procedures, but the Cerebral Palsy doesn't GO AWAY! I get aggravated by so many questions about "when do they think he will walk on his own?", "Is he walking yet?" People have no idea of how uneducated and insensitive that questions seems to me right now. Are they not happy that he is alive? Is that all they notice about Dalton, is that he can't walk? Do they not realize how far he has come? I do! I remain grateful everyday regardless of the discouragements and pray for his progress..

2010-05-04T23:07:00.000-07:00

Dalton is doing great. I am able to work full time now and we both love his daycare. He is thriving there and has changed so much, so fast. He has new articulated AFOs and is going for Botox therapy for his ankles on May 11th. Physical Medicine thinks that this is what he needs to get his heels down more. Great part of it is she doesnt want to cast him. He will just have therapy twice per week and ware his braces for 12 hours per day. His second Birthday is just around the corner and I am kinda sad, because he is growing up too soon. We went to a B-Day party and I realized that he is the size of a 4 year old. So strong and stubborn, just like his grandpa. Check out the shades, isn't he cool?

Nancy's Poem...its like she took the thoughts right out of my mind.

2010-01-26T20:11:00.000-08:00

The preemie experience is the shattering of all your dreams

For a normal, healthy delivery,

Of the ability to carry home a beautiful squirming bundle

After a short stay in the hospital.

It is lying there in your hospital room listening to

The happy sounds of whole families joined

Together by the birth of a grandchild, cousin, niece,

Or nephew, and knowing that your

Child is miles away and may not survive long enough

For you to see or simply touch.

It is that first glimpse of a skinny, scrawny, not much bigger

Than a Barbie doll child

And feeling, fear, awe, and joy for such a fragile soul.

It is sitting by your baby’s “bedside” day after day,

Week after week, month after month,

Alternating between the emotional high of “Look, her eyes are open,” or “She’s crying!”

And the lows of “I’m sorry, Mrs. Moore. Something has

Shown up in Lauren’s ultrasound,”

Or even “There is nothing we can do…”

It is hearing the alarms go off for the twentieth time in less

Than fifteen minutes because your

Child’s heart rate keeps hitting zero.

It is watching children dying around you, wondering if

Your child will be next.It is hearing your child’s cry of distress as the nurses

Insert yet another IV and do another

Round of daily blood tests.It is meeting other parents of children who are doing far better

And wondering, “Why me?”

And meeting parents of children who have just died,

And praising God for His mercy

To your child and feeling guilty because your child is alive

And someone else is grieving for theirs.

It is days of nightmarish testing and coping with less

Than positive results to the tests.

It is days of joy at seeing the first eyelash appear,

The child gain a whole ounce in one day,

And two bright shiny eyes look at you and into your soul,

And knowing that your child now recognizes you as Mama .

It is that final hurdle before coming home!

It is the sorrow of waiting for the monitor company

Representative to show you what to do

If the alarm sounds when your child is choking,

Gasping for breath, or simply dying.

It is the joy of just being away from all those nurses

And tubes and wires and beeps, and

Walking into the nursery you hastily prepared because, after all,

The child wasn’t due for another four months!

It is thinking the nightmare is over…only to realize it still

Continues in the form of

Such acronyms as PVL, RSV, BPD, CP and numerous others.

It is the final realization that those developmental delays

Have to be dealt with,

That reflux is a normal and unfortunate occurrence in most preemies,

That the constant fight to gain weight is in direct proportion

To a preemie’s ability to do so.

It is the mental images of a child running and playing

And communicating with others in a

Perfectly normal manner that are marred when you face years of therapy

In order to simply get the child to eat by himself or herself,

To talk or walk and then run.

The preemie experience is a journey…

A journey through your soul in order to find the faith and strength to cope,

A journey of the mind when you face the emotional weariness,

A journey of the heart…to accept that, no matter what,
This child is yours,

And you will love this child no matter what.

MY LIL ELF IS GETTING BIG!

2010-01-26T19:30:00.000-08:00

Dalton done GREAT!! He had the heart cath. and his PDA is CLOSED. His lungs sound so much better and he barely has a scar. He has developed so much in the past couple of months. He is transitioning now and can change from crawling to sitting. He wants to let go when he cruises but hasn't built up the courage yet. He also has taken up holding his own spoon, and he can feed himself from a sitting position. It is crazy how fast they can change and I am reminded everyday how much my baby is growing up. He called grandma from my cell phone yesterday all by himself and I heard him jabbering away...lol...she said "he said his piece and then hung up".

Back in from Houston again..he needs a procedure!

2009-12-11T13:11:00.000-08:00

Dalton had to go see the Cardiologist this week and what I thought would be the final visit turns into a night in ICU! So I am a little obsessive about lil man and his health...ok I will accept that. Turns out, the one thing that I thought the least about was his PDA (open vessel that should close at birth or soon after). He had an Echocardiogram done right after discharge and it showed that the PDA was very "small". I was told come back in a year and we will take another look, but it should close. Yesterday the follow up Echo. shows that it is "moderate" size and Dr. Rao feels that it is time to get it closed. So on Jan. 06 he will be admited back into Hermann in Pediatric ICU and they will close the valve for good. They will insert a catheter into the artery from the groin into his heart and place a devise to plug the flow. It is an easy procedure with little risk, but I am still devastated that he has to go through anything else. Just when you think the hospital stays and procedures are behind you, reality slaps you in the face. Please pray that everything goes smoothly and let this be the last procedure that he needs. I took the picture above, apparently you never get too big to snuggle with Grandma!

Gait Training

2009-12-07T11:25:00.000-08:00

Over the weekend Dalton got to go outside with his gait trainer. He seems to be doing well with it and PT said the uneven ground will build the strength up in his legs. I have been noticing some odd behaviors and I am concerned of coarse, but hopefull that it is nothing. He has been banging his mouth on the floor and he plays with his ears alot. We are going this week to get follow up vaccanations and final visits to Cardiologist. Pray for a safe trip and good results. God Bless!!

HE SITS!!!

2009-12-01T10:17:00.000-08:00

When I got off work yesterday, the babysitter called and asked where I was. I said I am about 5 minutes away. She said "don't knock, just come in quietly and look at your son". When I opened the door my boy was SITTING in the middle of the floor all by himself drinking a bottle of chocolate milk (apparently he has to be persuaded). At 18months actual age, some may think so what, but Dalton has never been able to sit unassisted because of his high tone. This is huge for us, now we just have get around to the walking and dreaded potty training. Check out the picture of him eating chicken and dumplings on Thanksgiving...lol..apparently dumpling juice makes good hairdress.

Just In From Houston and Venting!!

2009-11-12T21:00:00.000-08:00

We just got home from Houston. This time we had to go to Synagis for his vaccanations and to his Opthamologist. He got his RSV, H1N1, and Flu vaccs, after alot of leg work on my part. It amazes me how complicated it is in this country to get crucial vacs for children "LIKE Dalton". All they need to know is that he is a former 24 weeker and they should be throwing them at him, but NO lets make it as hard and as expensive as possible. Forgive me but I am really taking time out to vent. I have heard alot of things in the last few weeks and it hurts and makes me mad all at the same time. People can be real nasty with thier opinions of how you should be a parent. I have been called "momma munchausen" and things I probably don't want to know. I have been told that I am "over compulsive" about Dalton's development and his health and that "he is not sick anymore, he is fine". Thing is, Dalton appears to be "perfectly normal". He is chubby, alert, strong and overall seemingly healthy. He doesn't fit the typical description of a special needs child so people can't understand why I would say he needs special treatment. "Why do you make so many trips to Houston, he looks fine to me?" "Why is he still on the bottle, he is too old for that...his teeth are going to rott?" "Why is he still on formula, that isn't necessary at his age?" "Why don't you let him go to public daycare like other kids?" It is really hard to answer questions like that without going in to this long drawn out spill about how former preemies are not the same as other kids, no matter how much they look the same. By the time you explain it , most people have allready drowned you out anyway. They just act like you are wanting pitty. These are the people who didn't hear a handfull of Neonatologists telling me how "your life is never going to be the same after having a micropreemie", and "if he makes it" your baby's future depends on how protective of him "YOU" are as a parent. These people also have no clue what silent aspiration, ataxia ,IVH, PVL, BPD, low immunity, intestinal perfforation, corrected age, and sensory and motor problems are. They don't have to schedule thier life around handfulls of therapy appointments each week. They themselves were blessed with term, healthy babies. They don't schedule doctor appointments for much more than checkups and snotty noses. Forgive me for sounding angry, I am jealous! However, I am proud to say that I have self educated and I am very protective of Dalton because that is what is in his best interests. He is doing "better than most" and I am very proud of him, but I cant lose sight of the fact that he is not the "same", as term babies despite others efforts to sway me. I have had to accept that other people pass judgement regardless of the facts, and I will have to be forgiving. Thank God for preemiemomsblog.com and others who can relate, without them I would truely feel all alone in my world of preemiedom. Please continue to pray for Dalton and my sanity.
Sincerely,
Momma Munchausen

Results

2009-11-08T02:04:00.000-08:00

The MRI showed what they would expect of a preemie with a Grade II I.V.H.. There is P.V.L. (withering of the white matter), but nothing to be overly concerned about. The Swallow study showed that he does still have some silent aspiration when drinking thin liquids, but not when thickened with nectar. NO MORE REFLUX!!! We also seen a Physical Medicine doctor and she had nothing but wonderful things to say about my lil champ. She doesnt want to use oral meds for his tone and she said he doesnt need Botox injections either. She said just keep wearing the braces and doing the therapy and he is going to do just fine. She couldnt believe how strong he is in his arms and legs and how he is talking in sentences. I think after a long couple of months and some dreaded doctor visits, I am just going to enjoy my son and the Holidays. I discovered Halloween night that Dalton loves hay rides..lol....look as his face.

DIAGNOSED

2009-10-13T08:43:00.000-07:00

Dalton was diagnosed with Diplegic Spastic Cerebral Palsy on Sept. 17th. Despite the news, he still amazes me at how capable he is. He can pull up to a standing position, and he tip toes around the couch without me helping. He doesn't mind the braces for short periods of time, but he is not exactly crazy about them. He has the funniest laugh, and is chatter-boxing like crazy. My friend has a little boy with a speech problem and she understands alot more of Dalton's chatter than I do. Just the other day he said "put me down mama" I didn't catch it but she did, and when he said it again it made since..lol. He eats like a grown man. He likes mash potatoes and gravy, beans and rice, scrambled eggs with cheese, avocados, spinach, and his favorite snack is wheat crackers. I have really lucked out on the feeding aspect of having a preemie. I blog with other micro-preemie moms and feeding problems seem to be one of the major issues with former preemies (once again Dalton has to be different). We go for the MRI in the morning and I am nervous about the sedation due to his history of apnea. My aunt (who is a Pediatric RN) keeps reassuring me it will be fine. We also are having a Nuero Physiology test done so that we know what areas of his development we should devote more time to, and a Barium Swallow Study because of his refluxing. So we have a busy couple of days coming up, and once again I am reaching out for prayer. Please pray for good results for Dalton this week. God Bless!

GROWING UP SO FAST!!

2009-08-15T12:06:00.000-07:00

Dalton is 15 months now and weighs about 30lbs. He has glasses that he is wearing to prevent a crossed eye. He is such a determined little boy and gets into everything. He does seem to have some developmental delays due to the tightness in his muscles (that has kinda been a concern from the begining). He is being fitted for braces on his legs, and I am hoping that will correct some of the problem. He is crawling and pulling up, but not trying to walk just yet. He has such a personality and has my trademark attitude...lol. He is the light of grandma's life and my whole world. I think back on all we went through when he came into this world and I cant imagine what life would have been like without him. I can still see the little Hispanic lady's face every night when I am putting him to sleep. She was truely an angel and I am so grateful that we crossed paths that night. I have recently signed up to work with the March Of Dimes in thier walk to prevent babies from being born like Dalton . Please help me reach my goal www.marchofdimes.com/dalton1lb11oz .

2008-12-11T04:40:00.000-08:00

Sorry it has been awhile since update...Dalton is doing so great. Since we were released he has gained 5lbs which puts him at 12lbs! He has learned how to roll and is starting to crawl. He has such a personality, and spends alot of time snuggling with grandma. November was kinda rough...he got a virus and we ended up back at the hospital. A week after we were realeased for that he came down with RSV (even with the vaccination). He did really well though and only spent two more days in the hospital. I dont take him in public and thier are not any kids in my family so I think he got the RSV when he was at the hospital the first time. ECI comes to the house and they think he may be behind in his developmental goals. I have to make an appointment with a nuerologist to follow up with the one he had at discharge. He does alot of the things that the therapist is concerned about when she is not there, so I am not worried that there is a problem. He just dont like her...lol. I am excited about his first Christmas and have spent too much money allready. I am back online and will try to stay updated more often. Hope you have a HAPPY HOLIDAY!!! GOD BLESS!!

GOING HOME!! THANKYOU JESUS!!!

2008-09-28T09:35:00.000-07:00

We are going home today. Dalton and I finally get to start our life together. God is so good! The MRI showed that everything looks good (no bleed). They think his PDA has closed because they cant hear the murmur anymore. He passed his hearing test and he is being circumcised before we leave. He is being released without any medication and with a monitor that only I felt he needed. My son is living testimony that with prayer and faith anything is possible. His primary nurses come to wish him off. This is a part of their job that must be very hard for them. There is no way I could ever repay them for the love and support that they have shown Dalton and me. I love you ladies!! This one day has made the last four months worth it. I am so proud of my lil man! Thanks for all of the prayers. God Bless everyone!

NO TUBES....NO IV!!

2008-09-16T23:46:00.000-07:00

We are on the 8th floor. Thank You Jesus! He is nippling all of his feeds and taking three ounces at a time (he is such a lil piggy). He still has the occasional brady, but they are getting less and less. Now when I look at him it is hard to believe that he was so tiny in the begining. He looks like a normal, healthy baby. He seems developmentaly correct, but I am still nervous about the MRI that he is due for. He has some tightness in his muscles and I am worried about CP, but I know God will pull us through anything. Please continue to pray for my lil boy.

Moving Along

2008-09-07T20:48:00.000-07:00

Dalton is doing great. He recovered from his surgery and he is slowly but surely going back up on his feeds. Hopefuly soon he will be off of IV fluids and we can move to the 8th floor. He still drops his heart rate (brady) from time to time, but he should grow out of that soon. He has started nippling and is doing good. He has to be paced because he tries to drink too fast, but I have learned a few tricks from a level 2 nurse and they seem to be working. It is still so hard to believe that anything so strong came from me. I know that God has been so present in our lives, and he continues to reveal his plan to me everyday. After 31/2 months I am so tired, but I thank God everday that I am still here fighting. Things could have been alot different for us, and I could have went home alot sooner without my boy. Please continue to pray. Godbless!

Kangaroo Care!

2008-08-29T21:29:00.000-07:00

My son was a month old before I was able to hold him. I would say that was probably the happiest day in my life. I was so full of emotion I had the Chaplain come and pray just to thank God for this gift. I think that was the first time I really started feeling like a mom. It is so hard to bond with a child you cannot hold. We couldnt swaddle him because he was too tiny. We had to do what is called Kangaroo Care. This is where the baby has to be skin to skin on your chest. My body heat kept him warm outside of his isollette (I call it a bread box). He could hear my heart beat and it soothed him and made him feel like he was back inside the womb. The nurses ask that you hold your baby for atleast an hour because it is alot of trouble getting a baby that tiny out with all those wires and tubes. The first time I was able to hold him was for six hours. My eyes were floating I had to pee so bad, but I was on a mission. I was determined to bond with my son. Now he is so spoiled he thinks I should hold him all the time, but he deserves it.

2008-08-28T22:17:00.001-07:00

2008-08-28T21:01:00.000-07:00

I remember the first time I saw him in the NICU. It was so hard seeing him like that. He didn't look like a baby. His ears were still platted to his head . You could see through his skin, and he was skeletal. The doctors, and even the nurses sounded so negative. I heard everything from "babies like him rarely make it", and "the odds are not good" to "I will be very surprised if he makes it". I understand their reasoning now, but at the time it felt like they were thieves coming to rob my hope. He was mine and I was determined that somehow, God willing we would get through this.

Everything went smoothly for the first week and a half. His Ventilator settings were low and he was on room air most of the time. That was until Sat. June 01, this is the day that I will never forget. Dalton was acting very sleepy, and started requiring more oxygen. Silly me I just thought he was tired and worn out from the day before. We had a hard time getting him to stool, and they had sent him for a barium enema. I had no idea that he was septic and clinging to life.

His blood pressure had been very low, and at one point they couldn't get a blood pressure at all. He had been on a medication called Dopamine to help his blood pressure in return helping him pee. All day Sat. I kept saying "aww that baby so sleepy" , but he wasn't he was lethargic. I noticed that his nurse would look concerned when trying to get a pulse out of his foot. All that night I sat right by the incubator so worried that he was sick. Sunday morning his nurse practitioner came in and noticed a blue spot on his stomach and ordered an x-ray. This showed that there was air in his abdomen, but it was outside of the stomach. This meant that there was a rupture somewhere and the air was escaping. He was going to have surgery and I couldn't believe that a baby so tiny could live through that. They closed the pod and did the surgery bedside, because it would have been too hard on him to be moved. It seemed like forever before someone came to tell me what was going on.

The attending doctor and the surgeon called my mom and me into a conference room. This is where they told me that they had to remove 8 inches of intestine. There was 4 tablespoons of stool inside of his abdomen, and that he was extremely septic. I understand that they are professionals and that they have to be honest but what they told me next was by far the hardest thing I have ever had to hear. They said that he was critical and that things looked very, very bad. The stool inside of his body was poison and that the infection would take over his body and it was very likely he would die "I needed to prepare for the worst". "It would be a matter of hours, and he would start to require more life support and would swell and looked disfigured''. At a time like this when doctrine has done all it can, God was all I had left to give me hope.

There was a lady in the hall of the Ronald McDonald House and she could see the hurt on my face. She asked me to step into her room and pray with her. She was Hispanic and I barely understood a word she said. All I heard was "please God", and "save this baby". I felt so defeated and she was helping me overcome it. She made me promise to leave it all in God's hands and that in time I would see his plan. I felt such a peace come over me and actually layed down and slept for a while. When I woke up it was about 1am and I went to see how he was. My mom had sat with him while I slept, and when I opened the door I could see the smile on my mom's face. He was doing good! He was peeing all the fluid off, and he was stable. They were able to get blood pressures and he was not requiring ANY oxygen. The doctor would come by and stare in disbelief. God was revaeing his plan right in front of our eyes. It was then that I knew my son was going to live, and as long as I left it to God we could get through anything. I never saw the lady again, but I know that God sent her to me to save my son, and to save me too.

Dalton has had to have three other surgeries on his stomach since then. We just battled what will be the last one this Monday. Once again he has amazed me at how strong he is. He will actually go home without an ostemy bag, just like any other baby. He has faced so many other obstacles besides just that. He has a PDA, and he had a grade 11 IVH.We have been blessed with his eyes because so far we have not had to have laser. I believe that is due to my wonderful primary nurses who watch over him so well. Im told my son is a little celebrity in the NICU, and I see other nurses coming to take a peek at him. I know God has plans for Dalton and that with prayer and faith he will one day move mountains. I am so proud to be his mom. Please join me in prayer that soon I will be taking my baby home.

Our Beggining

2008-08-28T19:54:00.000-07:00

My name is JoLynn and I have a former 24wk micro-preemie. This story begins early Jan. 2008 when I found out I was expecting, and after 10yrs of infertility that was a miracle in itself. I began dreaming of bringing a chubby, little healthy bundle home and beginning a life as a new mom. Sixteen weeks into the pregnancy I got a call from my OBGYN that there was concern with my blood work. It showed my AFP levels at risk for a Down-Syndrome baby. I spent a month worried about that, and finally after a level-2 ultrasound my fear was relieved (HE was healthy). At 23 wks I was feeling some pressure and went in to be looked at. I was told I was just "paranoid" and that everything was fine. A week later I was in Labor & Delivery and my paranoia had become a reality. I was in pre-term labor.

I was hooked up to a fetal monitor and had been told not to get up for any reason. The heart rate was strong, but from time to time I would hear it fade out. Being uneducated I did not realize that his heart was stopping. Once I had been made aware of this, it felt like an eternity between pulses. The doctor rushed in and told me that they had to "take him now or have no chance". After having a miscarriage the year before I felt like such a failure. Why was it so hard for me to be a mom? Within 10 minutes I was being wheeled into OR and signing consents for surgery. I was in such a daze of emotion that all I can remember about the OR was the cold steel table. I didn't know that a baby so premature had a chance, and when they took him out I was so scared to look. I didn't want to see another lifeless baby. Then all of as sudden I heard the faintest little cry, and the Neonatologist yelled "he is breathing momma, he is breathing all by himself".

When I opened my eyes and looked up there was a crowd of doctors standing around a warming table. I heard one say "I think we got a chance here", and "heart rates stable". It was then that I felt a glimpse of hope. They let me see him for about two seconds before they rushed him out of the room , and I had never seen anything so tiny and fragile in all my life. Shortly after he was life flighted to Children's Memorial Hermann in Houston. This is where our journey and our constant struggle for life began. Join me on our roller coaster ride through the N.I.C.U..