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D-Day arrives...

I woke up on Wednesday morning feeling very peaceful. It was a very dreary day, rainy, misty and cold. I frantically started cleaning the house almost as if I was bringing a new baby home :-) The receptionist phoned the previous day saying that we have to be at hospital at 12h30 (the story changed with them every day), and Jodie was to have her last feed at 7am that morning. So she cried from 9am until the doctor arrived at 15h00..... I threw my toys out the cot at 13h00 and phoned the lady at the doctors office, and yes, I was really rude.... I just couldn't bear my little baby screaming anymore, so I definitely wasn't nice to her, while I was having my very rude conversation I started feeling terribly guilty. When I put the phone down my hubby said "Vickie, that is not what a Christian is suppose to do". So... 15minutes later I phoned her back and apologised. We were first told she was going to get anaesthetics, then we were told he is going to take the tube out while she was awake. We didn't know what to expect. At exactly 15h00 the doc arrived, he was going to give her a local injection to numb her tummy and then pull the tube out, if that didn't work he will take her to theatre. The chances of the ball in her tummy breaking off was about 99%. That day my hubby and I prayed "God, Please let the tube come out with one pull" And the Lord answered our prayers... So once again GOD CREATED A MIRACLE! She was screaming when he injected her and then he JERKED the tube out. I have to say even the surgeon was surprised... But hey God surprises all of us every day!

My Wife, My Friend and My Soulmate by Marcel du Plessis

This blog might be about my litte miracle Jodie, but this would not be possible without God and the love of my life Vickie. Jodie is so blessed to have a mommy like Vickie chosen for her by God. Sure times have been tough but with her unwaivering faith ( 99.9% of the time) and commitment, Vickie is able to provide a healthy environment for Jodie to grow and develop.

I love you my "Bokka" and I am sure that God will bless your blog and the way you are touching peoples hearts. What you are doing for Jodie is absolutely amazing !!

God Bless

Hubby

My call to the surgeon

I left numerous messages for the surgeon to call me, Jodie is still drinking (Hoorrray), although still coughing and the 4th set of neumonia not cleared up yet..... His assistant phoned me back today, we can remove the tube on Saturday or wednesday, we just have to pay the doc. PHEW... I am actually stressing, now I am too scared to take it out. It has been causing viral infections, and I think it's just a way of God showing us that it's time to take it out. Jodie doesn't do too well under anaesthetics as well so I guess I wont be sleeping for the next couple of nights.

A visit to the paediatrician again....

We went to the paediatrician again today because Jodie is ill ..... Her coughing is keeping her and us up all night. She is still, with God's grace drinking 90mls orally (Yippee). The visit to the doc went well, she smiled at him a couple of times and hey he couldn't help but to smile back. (I have to admit I have never seen him smile) I am so happy we changed her to Dr. Halkas, he is absolutely brilliant, God definitely led us to him as I can see the compassion in his eyes when he looks at her. Well, she is ok, her neumonia is better but still there, the viral infection from the gtube has still not cleared up. And of course after 6 months she has fluid in her right ear, which at a later stage (very later stage) will need gromets. He also mentioned that a little bit of fluid might be pushing up from her stomach to her lungs and it would be a better choice to remove the tube. (The tube also made the reflux worse) I am feeling really happy today for a change as my little baby is feeling better and the g-tube will come out soon. Financially we dont have money to remove the tube, after waiting six months but we know that God will provide.

Thank you...

My hubby and I would like to thank our familes for their support during the last six months...
Our son Devon (5yrs) - Thank you little one for your prayers, you are only five years old, but in the last 6 months you had to grow up really quickly. It has been a tough time for you, but now you can see that God has answered all your prayers.
My Mother Adri - she kept me on the right path faith wise, and all her prayers
My Daddy Barry- All his tears, I can remember when they drove through to JHB when Jodie went into theatre and the first time he met her, we were standing next to her bed and he couldn't say anything he just cried. I will never forget the text messages at 5am in the morning just when I needed them
My Mother in Law Engela - Thank you for crying with me....
My Father in Law Koos- Thank you for your advice and helping us financially
My sister Debbie- The best sister ever, thank you for your prayers and daily text messages
My brother in law Jaco - Boet jy's fantasties, dankie vir jou gebedjies
My brother and his wife Ernie and Sophie - Thank you for your calls and prayers
My sister in law and her hubby - Karen and Leon - thanks for your prayers
My Ouma - Thanks for the prayers, the messages and the calls. Jodie is blessed to have an Great Grandmother like you
My Best friend Linette and her family - thank you for being there for us
THE WHOLE FAMILY - thank you for your text messages, phone calls and prayers.
My Friends - Morne, Frans, Trinette, Anel, Elize - thank you for your kind words and assistance
Jodie's "little angel" - Morne - Dankie jy besef nie hoeveel jy vir ons beteken nie, mag die Here jou ryklik seen.
Our Pastor George - Thank you for your visits and your prayers
Pastor Louis Ras who sent me text messages and prayed
My Hubby's colleagus at Standard Bank - Vuyo, thanks for the visit at the hospital, it ment a lot to Marcel. Kevin, your support is amazing and we appreciate the time off when needed. Annelize, thanks for the flowers. The rest of team - thank you for the kind words and thougths.
My son's school - Drieks and Franciska thanks for the sponsorship and taking care of Devon in this difficult time
Anneke - We dont even know you but you paid for Jodie's removal of her g-tube thank you and God Bless

Jodie's little friend... Sam the Conqueror!

I can't remember when exactly I made contact with Nicky in Cape Town, but boy is she an angel from God. Her precious little Sam was diagnosed with RTS and is now 6 months old. Isn't he just a beauty. How is it possible that a person can be so close to someone they have never met. It is such a blessing to have a friend like Nicky, we have shared our fears, accomplishments, dreams, emotions and last 6 months with each other without even meeting. Nicky you are a blessing, we have a great family and it is wonderful to have someone like you. You have reminded me many times how good God is.

1 November GOD CREATED A MIRACLE!

On the 1st day of November our six and a half month nightmare ended. My mother came to visit and on Sunday morning we were supposed to go to church but Jodie was still ill and we couldn't go. The day before our Pastor said we must email him photos, he would like to put it up on the big screen in church, so that they can pray for her. At 11am that day Jodie drank 80mls orally. I cannot explain how it felt, with every little ml she drank I kept on praising God. My little baby was drinking, I don't think people realise how a simple little thing like a baby drinking can change your life. For six months I had been crying, praying and just trying to MAKE her drink, then God HAPPENED. My Dad once told me "Vickie, God is in control, and He will heal in His time", if he had only knew how his words carried me through the last six months, everytime I struggled I remembered his words "God is in control". Devon was so happy, he would now be able to hold her and touch her tummy!

Week 15 back to hospital again Measles?

We've been home for a week after a ten day stay in the hospital. Jodie had little red spots on her head and within hours it covered her whole body. My mom in law came with me to visit the doc AGAIN.... Jip he confirmed it looks like measles. Due to Jodie's veins being so terrible he said that I would be able to "doctor" her at home BUT if she struggles with her breathing she will be admitted. An hour later I had to do CPR again at home, jumped in the car and rushed to hospital. Well, I can now safely say Jodie didn't have measles or any of the other 21 childhood illnesses the doc tested for, at the end of the day it was a viral infection due to the gtube.....

Weeks 12 Back to Hospital...Neumonia

Week 12 started off with Jodie struggling to breathe. On Sunday night my hubby and I rushed her off to casualties and she was admitted, the dreaded neumonia again. So... another 10 days in hospital. During this time we did a milk scan which showed Jodie was not aspirating but just normal reflux. We also did a barium swallow which confirmed the milk scan results. Was she still aspirating? Well the doc says the nissen stitches are completely loose and her reflux is still severe but he does not think that the fluid is going to her lungs.

Week 10 She's drinking again...

Week 8 and 9 Jodie has neumonia

It took me 8 weeks to teach this little baby to drink, we have reached 50mls orally. She now once again has neumonia and has stopped drinking. Every time Jodie gets ill, I have to start from scratch again, with a number 1 teat and exercises.

Week 7 A visit to the family....

My hubby suggested that I visit my family for about two weeks, just to get away and "relax" :-). My sister also havent seen little Jodie so I thought it was a really great idea, I so missed my family. Now you have to understand my mother is a "no-nonsense" lady when it comes to babies.... When I gave Jodie bottle I would give her a few sips and take the bottle out to enable her to breathe, she could not breathe through her nose with the teat in her mouth. Thank goodness my mom took over from me the one day, and to my suprise she just taught Jodie to breathe through her nose... So the drinking started, Jodie took 60mls and was doing great. It was so nice to wake up in the mornings with my family around me, with my dad shouting "Good morning! God is going to create a miracle today" and my sisters loving smile. I even couldn't wait for Diarco (11yrs) and Diandrie(9yrs) (my sisters kids) to jump on me in the mornings. I have to tell you about Diarco - He is such a precious little boy - he said one day he wanted to pray for her but alone... So we gave him some time with her... Diarco, Diandrie i just want to say thank you and remember to hold God in your hearts everyday.

Week six at home.... A light in the tunnel

Thank you Lord... God gave me more and more strenght every day, I slept for about 2 hours in 24 hours and in the mornings when my day started, I prayed, "Lord, thank you for giving us another day with our baby, thank you for letting her breathe". Jodie was now drinking 25mls every two hours and I gave her 55 through the tube. Well, at least she is now drinking, we will remove the tube as soon as she hits 80mls! It took me six weeks to teach her how to drink, but we are not there yet.

Jodie stopped breathing....

During the 5th week at home I was doing the "normal" feeding with Jodie and once again she refluxed... BUT this time it was really bad, the milk kept on coming out of her mouth and suddenly she just went "floppy" with eyes rolled back. Jodie wasn't breathing, I turned her upside down, blew in her face (that took about 20seconds), but nothing..... I started doing CPR (thank goodness I had training), I dropped down to the floor with her flat on her back, started CPR but it was not working. "God, please I cried, help me to save my baby" I knew that if I jumped in the car and drove to hospital she would not be alive by the time we got there. "Please Lord, Let her breathe..." After 2 minutes, Jodie started breathing.. I sat for two hours on the floor just crying. Little did I know that this would happen another 9 times

Week 3 and 4 at home

Jodie's stitches in her stomach must've stretched a little bit, because every time we feed her she would reflux. Just to explain, her reflux was so severe that it caused neumonia in NICU, and if we didn't stop the stomach contents from coming out she would get neumonia again... So every two hours when I fed her, I made sure the tube stayed open for at least 20minutes. So feeding took an hour, I had an hour of "rest" inbetween. The other problem we faced was that when she refluxed we had to run and put the syringe back on, open the tube so that the contents will push up into the syringe and not to her lungs. With the vomiting continuing and her struggling to breathe with every feed all we had left was to pray.

Week 11 Heart attack

My husband phoned from work saying that the ambulance is taking him to hospital...chest pains. My heart stopped and I prayed "God, please not again, please Lord what will I do without him, I cannot be without the husband you have chosen for me, I will not be able to raise two children without him" Upon arrival at the hospital the doctor confirmed it was the second heart attack for the year.

Day 87 We are home NOW WHAT?

After 87 days of waiting we are home at last. We were shown in NICU how to feed Jodie with the g-tube (although the nurses there said they are not sure how to use it). I have to admit it was really scary. In NICU she cried every time we gave her milk through the tube, little did we know we were feeding her wrong. They told us that feeding will be quick and easy, it is just like the nasal tube, you just pop the milk in and everything will be fine BUT the g-tube is 5 times thicker than the NG tube and the milk went into her tummy within 2 minutes. I wonder how painfull it must be to have food pumped directly into your stomach within 2 minutes...... My hubby and I then started the big research on how to feed a baby with a g-tube AND MAN DID WE DO IT WRONG!!!! The milk was suppose to run into her tummy for a minimum of 20 minutes, and we had to make sure there was no air pumped into her tummy as well... Needless to say after two weeks of crying, screaming, praying we got it right. Hey, I can now safely say I am a g-tube feeding expert, and at last can help any mommy out there with advice. Jodie wasn't able to burp or vomit because she had a nissen fundo done.... The second day of us being home, my hubby and I were feeding her and within seconds she vomitted...... We just stared at each other..... How did that happen.... Just remember that when we got home Jodie didn't even want to touch a bottle, she had dysphagia (this means that she has trouble to swallow, and cannot stand anything in her mouth). We had a speech therapist in hospital that taught me how to do exercises in her mouth to let her get use to a bottle. So I then started the big exercises, every two hours. She didn't even drink 2mls.

Day 86 Our angel is coming home...

It's been 86 days in NICU... and our baby is coming home. We don't know what her future holds, we just know GOD saved Jodie's life and He is healing her every day.

Day 71 to 82 Recovery

I don't know if these couple of days were for Jodie to recover or for me... I just couldn't stand the g-tube. She was doing fine, just in a huge amount of pain and cried alot.

Day 70 The day of the GTUBE

I dreaded this day, but it's the only way I could take her home.... The operation was scheduled for 7pm that night, the anaesthetist came in and we explained that she might struggle under anaesthetics. The surgeon explained the operation again, and said it will take an hour. When they rolled her into teathre all we could do was pray. An hour and a half later she came out..... I was shocked, she was given morphine for the pain. My husband stood next to her bed, and tried to pull me closer but I could not even look at the pipe. I almost fainted and wanted to vomit. This is not what I wanted, God I asked for a baby not a child with a plastic pipe in her body. We left at 11pm that night, little did we know what was going to happen.... At 2am, the nurse wanted to give her glucose through her pipe, but when she lifted the blanket the g-tube was outside Jodie's body, the balloon deflated. So the operation wasnt successfull, my sister even said that it was the wrong tube, it wasn't suppose to last God didn't want that tube inside her. We had to operate again, and place a different type G-tube in her tummy. Now please I want you to realise this is a 50 day old baby... she's gone through hell and back BUT she is still fighting. On day 52 the tube was replaced. By the way, the reason why the first operation took an hour and a half was because the surgeon couldn't find any veins. Also the drip that tissued in her left calf weeks ago now made a big flesh wound and will leave a terrible scar.

Day 57 to 69 I am still refusing the G-tube operation but Jodie is still not drinking

Jodie is still not drinking, if I knew what I know today, Jodie would've never had the g-tube. Look I am no doctor, but the barium swallow was a sign, Jodie drank 60mls that day, the liquid was thick and the bottle teat was large.... I really just want to get her out of NICU at get her home, I even thought maybe I must sign a waiver and just run :-)

Day 56 I Hated the world

Boy was my faith tested this day..... I didn't even want to go to NICU, if one more nurse would mention RTS I would crack! I stopped praying, yes me the big christian. I took my Bible and threw it in the cupboard... God has left me. I told my husband that I dont want to pray with him anymore... That didnt go off too well.. My mom even sent me a text message saying "I Love you" and I replied, "Love wont heal my baby". After hours of a one way discussion with my hubby to get me back on track and me just staring at the wall, he said " Vickie, in the 34 years of your life has anything bad happened to you? God has protected you for 34 years and now when something comes your way that is difficult you forsake HIM. I felt horrible, what am I going to do....

Day 55 The Geneticist Arrives

I have never felt so humiliated in my life. The geneticist arrived, camera in hand. She asked me to undress Jodie and of course everybody was staring. She was there for an hour and took about 30 pictures of all the "problems" she thought Jodie had. Flat thumbs, large fontanel, down slanting eyes, high palate, natal tooth, columella extending below nares, even her birthmark at the back of her head (which my son and husband has) was a problem. After an hour she took us into the office and sat us down and then the story started with Rubinstein Taybi. She confirmed that she thinks with Jodie's clinical features that she definitely has RTS. I couldn't breathe, I wanted to throw up.... How is it possible, has God forsaken me? We didn't say anything on our way home.....

Day 54 Trying to change paeds

So after 32 days and me being really frustrated with Jodie's paed, my hubby said he will have a chat to the doc. Devon and I waited outside when he walked into NICU, I just couldn't face that doc again. I tried to look through the window and felt very proud when I saw my hubby walking in.... He will sort the doc out in no time. He told the doc that we will be getting a second opinion as we are not happy with the situation. Can you believe that the policy is that you are unable to change doctors whilst in NICU, no matter how terrible the service was. Well, we got our second opinion, the second doc said she'll get a geneticist to have a look at Jodie and tell us if she thinks Jodie has Rubinstein Taybi. During day 32 I also exploded when the sister on duty placed the wrong child's name on Jodie's blood sample, this wouldve meant that she would receive the wrong bloodtype. I have to admit 32 days in NICU tends to stirr up all kinds of emotions and I made sure that nobody did anything wrong with Jodie, when they did i would really throw my toys.... It even got so bad that one of the nurses took her handbag and left because she told me not to waste oxygen on Jodie's nappy rash.....

Day 52 and 53 The tests start...

Isn't it wonderful and mysterious how God shows His power.... On day 31 I felt like a zombie, no feelings, no physical strength to carry on. My mother phoned and said, "Vickie, just remember, that little girl is alone and have no-one but you and your husband. She is fighting, she wont give up unless you give up. Well, that got me started again... In the last 31 days my mother prayed with us and sent me text messages to keep me from drowning in this nightmare. I didn't know what to pray for anymore, do I beg? Do I praise, or do I I thank? I was totally lost.
The doc arrived being very moody (again), it was as if we were a hurdle to him, he just wanted to get rid of us. He once again started a "syndrome" conversation and said that we have to do tests and sonars which will proof to us that there is someting wrong and she will be mentally retarded!!! What a nice thing to say. I phoned the whole world to pray that these tests will be clear and negative. They did brain, heart, kidneys etc sonars and it all came back normal. I told my mother and hubby in a very humoristic way, that when I arrive at Jodie;s bed in the morning I have to ask the angels to move up a little and give me some space, and MAN WERE THEY BIG!!!

Day 51 Ecoli

Jodie has the Ecoli virus, and has stopped drinking. So we are back on antibiotics again with a drip in her head. She also has to receive blood as she was anemic. Wow, that was a shocker to me.... receive blood, from where? Will it be ok? Little did I know that she would have to get blood three more times. The doctor arrived early, walked in with his hands together and said "Well, we are going to operate on your baby as she is not drinking. We are going to put a pipe in her stomach to feed her. You will then be able to take her home, it's simple and easy to use and within a week she will be home. He also suggested an operation called Nissen Fundo, this is to stop the reflux. He said - and this I will never forget - The operation could be fatal but you just have to sign the permission papers. MY JAW DROPPED....In my minds eye I could see how I was attacking this man. How can he be so cruel, with no emotions? This is a man that studied for 7 years to be a doctor, practised for several years but he didn't have an inch of compassion. I turned blood red, everybody in NICU was staring at me, waiting for me to explode. I very calmly answered, NO I WONT ALLOW IT.
On my way home I cried feeling emotionally and physically exhausted. "God, what more do you want me to give? I am giving everything, I have nothing left to give" Upon arrival at granny's house to meet my hubby, I was crying so much I could hardly explain. As I was talking, this strong man in front of me started breaking down in tears. We agreed that no such an operation will be performed. God saved her life and will heal her.

Day 50 What's going on?

Jodie was doing really well, she had 60mls every three hours. I left NICU earlier to spend some time with my husband and son. At 11pm I phoned NICU, as I do every night. The nurse told me she had a fever. I was distraught, what could be wrong? I didn't sleep at all that night.

Day 49 We've hit GOLD!

We've hit 40mls! I am exstatic, God is wonderfull, He is a Healer, we only have 20 mls to go then we can go home. That evening I left with Jodie drinking 60mls. The time for her and Devon to meet is coming!

Day 38 to 47 Jodie is drinking better

Jodie was drinking between 15 and 20mls, she was suppose to take 60mls already. Every time the paed moved her milk up I thought he was spitefull :-). "God, why I prayed, why us, why Jodie, what is wrong with my baby? What did You do?" How could I dare question my Holy Father? He saved her life for us, who am I to be so arrogant? I immediately begged for His forgiveness.

Day 36 and 37 The big barium swallow

I arrived early at NICU to meet the new paed. I suggested a barium swallow because I was sure there must be something wrong in her throat. An hour later Jodie drank 60mls of the barium liquid, is that a sign? Is she ready to drink now? The barium swallow revealed she had severe reflux, so the new paed ordered us to thicken the milk. She drank 10mls with every feed...at least that's a start. Jodie was given bottle every three hours, so every three hours my family prayed. My mother woke at night - every three hours - and prayed. I was begging, pleading God, please let her drink. If she drinks we can take her home....but she didn't.

Day 23 to 35 Jodie is still not drinking..

No matter how hard we tried, Jodie refused to take the bottle. I bought every bottle on the market, but nothing worked. It was almost as if she was protecting herself by pulling her tongue back to her throat blocking her airway and then turning blue. My least favourite person in the world at that stage was Jodie's paed. How is it possible to keep on trying the same think over and over and expecting it to work. Why was he not trying something else? Luckily we had another paed standing in for him for a couple of day, maybe he would suggest something different.

Day 22 The drips comes off HOORRAAY...

The nurses were relieved, they have never seen a baby with such terrible veins. So, it's ok if she's not drinking, she's not well enough to drink and of course the nasal tube must irritate her. We also tried to get the oxygen off, the nurse slowly decreased the oxygen every 4 hours, and every four hours God showed me what a miracle really was. When they turned the oxygen off, I kept on praying "God, please let her breathe, please God". After 18hours of "fiddling" with the oxygen it was removed and she was breathing on room air again. I praised God all the way home.