On the 30th of August 2008 I prayed and asked God for a little baby, then God gave me Jodie....
My Face may be different, but my feelings the same I laugh and I cry, and I take pride in my gains I was sent here among you, to teach you to love As God in the heavens, looks down from above To Him I am no different, His love know no bounds Its those here among you, in cities and towns That judge me by standards that man has imparted But this family I have chosen will help me get started For I'm one of the children, so special and few That came here to learn the same lessons as you That love is acceptance it must come from the heart We all have the same purpose, though not the same start The Lord gave me life, to live and embrace And I'll do it as you do but at my own pace
Well I have to admit, it's been a while (a very long while). The last 8 months have been really busy for us, I started working and stopped working again.... long story but I am working from home now and my precious little Jodie is with me. It's difficult I have to admit to work and to look after her, but God is giving me so much strength. Jodie is doing really great, I am running after her as she is crawling really fast and laugs when I run after her. Her eating is still a problem and the dreaded constipation has returned. We are starting her tests again and hopefully we can get her spinal MRI done as we have tried on two seperate occassions but it failed. It's unbelievable to think that she is now 20 months old - WOW time has really passed quickly. She went through a series of pneumonia and whooping cough but that is a thing of the past now. She still feeds every 2 hours and has been drinking out of a sippy cup for 6 months now. She loves standing while holding onto something and jumping up and down. I have never seen a child friendlier than her, she is absolutely adorable and smiles all the time. I will try and update Jodie's blog on a more regular basis as I really miss blogging and bragging about her.
It's been a while since I updated Jodie's blog, we've been so busy between neuro physio, speech therapy and the opthamologist that there is not much time for me to update the blog. Jodie is doing so well, she started babbling about three weeks ago and her favourite word is ouma (granny). We received a little bad news about Jodie's eye but let me first start at the beginning. In our last nine months we have met a huge amount of people, some brilliant where you can see the passion for children in their eyes, and others... well let me not go there. I think its very important for a mother to find the rigt person to assist you with your child, and yes I am extremely "picky". Jodie and I have met Estelle Brown a neuro physio, and I firmly believe that God sent us to meet each other on this wonderful path we are walking with little Jodie. The first day we met Estelle I could see her love for children, and how hard she works to assist mommies and babies that needs help. Estelle is very highly qualified and is also involved in outreach programmes where she helps families at no cost to let their children be the best they can be. She also lectures therapists in neuro therapy. Best of all is Jodie LOVES Estelle. On our first day Estelle mentioned to me that she was worried about Jodie's right eye, and I was a little bit shocked because our paed said it seems as if Jodie has Nystagmus in her left eye, and we always thought her right eye was the better of the two. Estelle then referred us to an opthamologist who confirmed Estelle's fear, Jodie has Duane Retraction syndrome in her right eye. We will go into theatre on the 19th of April to have this looked at.... Anastetics again :-(
But God has blessed us yet again with Jodie's talking, she chat's more than any other 9 month old baby. She sits for about 5 minutes and she's rolling - Jodie you are doing a great job. Needless to say my once a month blue days have dissapeared and I thank God every day for what He is doing for us. My prayers go out to other mommies that really struggle and have babies far worse of than our little one. AND there is nothing compared to achievements, I think a person only realizes how difficult it is for our little ones to achieve a milestone and when they reach it, it is as if life has started all over again with excitement, laughter love and happiness. Jodie has taught me more in nine months that I could EVER learn in a lifetime, she has taught me about courage, strength, love, fear, and has taught me to laugh again.
She has become a real busy body, that doesn't sleep during the day, and wants to play all day long. And if I dare to leave her for ten minutes she complains by babbling in strings. Boy, God has blessed us!
After Jodie's g-tube removal the surgeon said that the wound will close on its own within 7 days. After 7 days it still didn't close so I called the surgeon again who replied that we should wait another 10 days. I did not feel comfortable with this at all so I booked Jodie with the wound specialist, she had a look at the wound and placed a comfeel plaster on it and said we should return in a weeks time to have it removed and that it will be closed after then. Two days later Jodie was in so much pain, the plaster was pitch black and she was crying.... so back to the wound specialist we went. When she removed the plaster she immediately said the wound was corrosive, I was sick to my stomach when I saw what happened. There was seven small little holes around the big one... The hole inside Jodie's tummy was still open and stomach acid was eating away at her skin, a keloid also formed. My advise to all mommies... please let the doctor close the wound in teather when he removes the g-tube. We went to the surgeon immediately and he booked us in for closure of the gastrostomy the next day. Jodie was struggling with bronchitis again and we felt really uncomfortable with anasthetics. But with God's grace everything went well and he placed a stitch inside her stomach and glued the outside closed. The anetathist was really brilliant, Dr. Gouws, we've used him everytime Jodie's had to go for an op. He even came running out of theatre to ask me for a bottle to comfort little Jodie, and afterwards he came to see me to make sure she's ok. Well, the wound still looks sore and is red and swollen but I am sure it will take a couple of days to heal.. We will visit the wound specialist again in 2 weeks time to get silicone sheeting placed on her wound to ensure the scarring isn't too bad.
If there was an award for insanity, I think I would probably win first prize... Yes, Jodie is ill again. Yesterday was a very difficult day for me, I get these days once a month where I just go totaly insane. Jodie has been coughing again, and with coughing comes vomiting and fever. I never take her out of the house because of fear that she'll get ill. Sitting at home with no television, no internet, just me and little Jodie, which I suppose is not a bad thing because we get to do her neuro and speech exercises ALL DAY LONG. She is now at the stage where she starts laughing at me when I start the speech exercises. It is so frustrating when one sit for hours, like a parrot, repeating words and sounds with no response in return. We did the "normal" yesterday and then I started thinking of her future (which is a definate NO-NO). With our usual starting spells at her best friend - the ceiling fan - I started to panick. The walls closed in on me, I started hyperventilating and ended up vomiting in the bathroom. How is it possible to feel so sick? I was pondering about her health, our finances, her growth, her speech and once again her broncho-neumonia. It's absolutely driving me insane not to be able to shower (which ends up in a 10 second scrub down), not to clean the house, not to do the laundry and not to spend time with my son and hubby. I feel as if I have a newborn baby and look it too. Then when my really hectic day of doing nothing but taking care of Jodie ends, and I get into bed at 10pm totally exhausted... my jimmy legs syndrome starts :-)
I am so gratefull.. Jodie is doing really well she gained another 250grams in the last week although she is not growing in length nor head size. I am really thankfull that she is gaining weight and I have to say she is now drinking a liter of milk per day. Since the tube has been removed she has been doing great, I am almost 100% certain her reflux is gone. There is no more coughing and wheezing and shortness of breath, removing the tube was the right thing to do... God has been so good for our family. I have to admit I am a little anxious because Jodie's speech is not really there yet. She makes noises but with no syllables such as da,ba etc, I am sure it will happen. I exercise with her 2 hours per day and have made recordings which I play over and over again, I am just a little bit frustrated because I am not able to see any improvement.
Thank you Lord for storms, thank You that I can know that when a storm comes my way I know You haven't left me, but that You are right here beside me to see me make it through. Thank You for preparing me with each storm so that I can overcome the bigger ones that lies ahead, because through these You are my teacher. You are my gentle Giant and I thank You for catching every tear and returning them with streams of joy!
On saturday my son, Devon decided we should play "husband, wife and baby". He grabbed Barney and renamed him to Brian Habana (his favourite rugby player). All dressed up in his pink babygrow and pink hat, he fed him his bottle and I even had to re-heat an empty bottle. After a while he asked for a syringe to feed "Brian" through his gtube. It is absolutely amazing how the last six months have impacted on little Devon. Jodie of course squealed with delight as her brother walked around with her barney on his back. At last Devon can now play with his sister and start to bond.
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!
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 !!
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.
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.
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
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.
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!
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.....
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.
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.
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.
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.
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
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.
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.
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.
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.
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 :-)
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....
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.....
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.....
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!!!
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.
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.
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!
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.
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.
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.
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.
Jodie is still not drinking. Her drips now tissued a total of 18 times. The first one that tissued in her calf, is still red and bloody, but the sister covered it with granuflex and said it will take some time to heal.
Jodie isn't drinking at all. Everytime she is bottlefed her saturation drops and the oxygen is on its highest. Her little body is full of needlepricks as her veins keep on falling flat and the drips tissue. She had another three times of veins not holding. I left NICU at 11pm that night with a drip in her foot and arm. On arrival the next morning - with a very tired body and mind - I noticed all her hair was shaven off and she had two drips in her head. What an awfull sight! She must've had a terrible night, I counted 17 needlepricks in her head. I sat next to her and started praying. " God, please once again I beg you to help our baby, God she is helpless, You saved her life. All I am asking is make her well enough to take her home". Jodie did not drink at all that day.
At 10:05 am I was sitting next to the nurse who was bottle feeding Jodie when her saturation dropped, and Jodie turned blue. The nurse quickly gave her oxygen and she returned back to normal, or so I thought. The rest of the day I tried giving Jodie bottle and she kept on turning blue with her sats dropping whilst on oxygen. The doctor was called and an xray revealed that she had aspiration neumonia. A 13 day old baby with neumonia, my heart was shattered. The nurses requested me to leave while they tried to find a vein for a drip and antibiotics. I didn't go far, standing outside the door I could hear her screaming (which was really weird because Jodie never cried - it seemed as if she just couldn't cry or make any sounds at all). It took twenty minutes, I paced up and down with tears streaming down my face, my poor baby, they are hurting her. I phoned my hubby with the bad news and he was distraught. My husband had a massive heart attack in February and only with God's grace did he survive. Just before going back into NICU I bumped into Jodie's paed, who then told me very abruptly that she has aspirated because of the syndrome..... I stared at him, not know what to say, what did he mean, what syndrome, she is perfect. God blessed me with this baby, there is nothing wrong with her. The doc turned around and left me with many unanswered questions. I immediately phoned my husband and he arrived at the hospital. On his way he had a look on the internet for babies with flat thumbs and syndromes.... He then told me he read about a syndrome called Rubinstein Taybi and it doesn't look good. We then agreed that we will never speak about it again as God will never allow this to happen to our child. Walking back into NICU was shocking, she had a drip in her tiny little foot and in her hand. Her eyes were swollen shut from the oxygen and red from crying. You know the worst think for me was that when Jodie cried, there was no sound just a tear rolling down her cheek.... Two hours later the drip in her foot tissued, they had to re-do it. It was placed in a vein in her left calf. Three hours later the other drip tissued and was placed in her other hand. At 9pm I left NICU to granny's house, my poor son, so unsure of what was going on. He even said that next time we have a baby we must have a boy because girls just isn't right.
After 12 days of arriving at NICU at 7am and leaving at 8pm the nurses said I could dress her. Sitting in NICU every day next to her holding her little hand and just staring, isn't it just wonderful how a person can feel so fulfilled by just starting at someone for 13hours. While dressing her my hubby and I noticed Jodie had flat thumbs, but we didn't think anything of it, we even jokingly said she sucked on them in the womb that's why it's so flat. On day 12 the bottle feeding also started, Yes, breastmilk, I wanted to breastfeed her so badly because then we would bond, we never had time to bond. Jodie only had to drink 25mls, yes that's right only 5 teaspoons. She did great, she finished her bottles and we thought the time for us to go home is coming. Devon hasn't even seen his little sister yet.
The world stood still for me that day, I took her in my arms and for the first time in 8 days I smiled. It wasn't just a smile, it was as if a ray of sunlight surrounded us, she was so small. I placed her on my chest and slowly felt the tears rolling down my face....
At 13:15pm Jodie was born, she didn't cry, she was purple.... I only saw her for a second as they rushed her off to NICU. Why did she not cry? "God, what's going on? Please let her be fine" I just wanted to get up and run to see her. An hour later I was pushed back into my cold, lonely hospital room. I FELT DEAD! My hubby walked in and I could see he was trying to be strong, he confirmed she was fine but on oxygen. We said a prayer together, "Thank you God for saving our baby" Jodie did not get enough oxygen hence the purple colour, this was not good news for her lungs, she wasn't suppose to make the c-section BUT she did. Once again I could not wait to go to NICU to hold her and see her. Two hours later I was pushed into NICU, I didn't know if I wanted to cry or just run away. It felt as if I was having a horrible dream and that Jodie was still safe inside my womb. She was so tiny weighing 1.9kgs, she had lines in her navel for drawing blood and the oxygen "hat" was so big I couldn't see her face. I just wanted to hold her and comfort her so that she can feel that mommy is there. I only held my baby eight days later.... Just imagine seven months of excitement, praise to God and anticipation, and then being unable to hold your baby for 8 days. I was an emotional wreck, never happy, always crying, but worst of all doubting my faith.
Month seven started off with really BIG kicks and once again crams and high blood pressure! "God, please help it go away, she is so perfect, let her be fine, let me be fine" At the end of month seven the contractions started. "No, God Please I prayed, it's too soon, she only weighs 2.4kgs. I kept on praying knowing that God is in control and He will make it stop.... but it didn't. The morning of the 20th of April I couldn't bare the pain anyomer and went to visit the gynae, which in turn booked me into hopital and said we will have to to a c-section. I realised then that God has had this planned from the beginning and He was in control, I felt re-assured. I just couldn't wait to meet her. On the 23rd of April the contractions were extremely close to each other and the doc said we'll do the c-section immediately. My mother and sister drove all the way from Nelspruit and I so wished they would arrive. Just as I was being pushed into teathre my mom and sister arrived. My mother said a prayer and I started crying, scared but thankfull. I am going to meet my little girl! "Thank you Lord, thank you, I prayed" I have been a Christian all my life thanks to my mom and dad. Going into teathre was great! Can you believe it, it was SUPER exciting, I just wanted to see her and hold her. The angel God sent me was coming into my life, everything was just perfect.
During month six of my pregnancy I was booked into the hospital with cramps and high blood pressure.... I prayed " God, Please let my little girl be fine", yes it was a little girl. I overheard Devon pray one evening asking God for a sister. With tears of joy streaming down my face, I confirmed that he is going to have a baby sister. My husband went to the Mighty Men Conference the year before and left a piece of paper in his Bible which I discovered during my pregnancy. It was a list of everything he thanked God for blessing him with, and of course at the end of the list he asked for a daughter. How wonderful is that, we received what we prayed for. With God's help we were fine and left the hospital feeling thankfull. Every day passing, Jodie grew bigger and stronger. She wasnt a big baby but she was normal and with every scan I fell more and more in love with her. She was beautiful, just what I asked for....
On 15 September 2008 I very sneekily bought a pregnancy test.... My son Devon and hubby was in the kitchen when I walked in, I had the biggest smile ever. I waved the pregnancy test around jumping up and down, like a little girl just before christmas eve. My son didn't know what was going on and when I explained his eyes when star bright and he started laughing with joy. He has been waiting for a little friend for years, we even laughed because in his mind if you buy a pregnancy test then God gives you a baby, he said that we should've bought it a long time ago. We just about phoned the whole world with the good news. That night I prayed and thanked our Heavenly Father that he blessed us with a little baby. Every day that went by, the little one grew bigger and stronger, how wonderful it feels to have a little miracle grow inside my womb. I could hardly wait to buy baby goodies and counted the days from the one scan to the next.