Story of 3 to 6 months "Yussuf is finally at home!"
When I thought that finally I don't have to go to the hospital every day and that the struggle to find somebody to drive me there was over, another bigger struggle was waiting for me at home!

Before Yussuf came home, all my family who came to support me as a new mother went back home. So the major help I was expecting, especially from my mother to teach me all I need to learn about babies, was gone! I know that if they could stay with me longer, they would, but it was not possible. Thank God at least they stayed with me until I completely recovered myself physically.

So here I am at home, with 0 experience with babies, having to learn not only how to take care of a baby for the first time, but to take care of a baby that has many special needs.

At the hospital, they told me they would send me a nurse to help me. It turned out, the nurse job was only to change the G-tube bandage and make sure there is no infection at the G-tube site. At that point, I still couldn't even take a look at his G-tube. In fact, even up to this day, I still get Goosebumps when I look at that hole in this stomach full of blood!

There were too many issues I had to deal with. Here are only few of the struggles I can remember now: I had to learn to use the G tube and feed him through that. Holding Yussuf and changing his diapers was extremely hard, because he was so stiff you couldn't even bend his legs.

After his 2 months stay in the hospital lonely, Yussuf was lacking a lot of affection and love. When he finally found some affection from me, he didn't want to let go at all. He wanted to be held by me and me alone 24 hours. I was sleeping in a sitting position, holding him in my arms so that he can sleep!

Taking out gas and bowel movements was extremely difficult for him. He would cry and cry and cry from pain until he was able to do it. Giving him his allowed oral feed was another struggle. Vomiting and reflex was another nightmare I had to deal with. Learning how to give all his medications and remembering to give them on time was a challenge for me. Learning his therapies and doing them was very overwhelming. When his therapist first came home and tried to teach me, I just started crying and I told her I wasn't ready for that.

Going to hospital appointments on a continuous basis was one of the hardest tasks I had to do. If I had one appointment in sick kids, it took me basically the whole day from early morning to very late in the evening.

My husband was still under the shock of what happened. He had to be very strong when his wife was in one IC and his baby was in another IC in a different hospital, plus all the bad news he had to hear about his son day after day. So after Yussuf came home, all the stress he accumulated during the 2 months after Yussuf's birth came out. So on top of all that I had on my plate, I had to deal with a depressed husband.

The lack of sleep I had was not making my day better neither. Until Yussuf turned 1, I wasn't getting more than 4 hours of sleep per day.

I had a very big wish and I prayed for it a lot before I deliver. My wish was to be able to breastfeed my baby. Of course that was not possible directly, since Yussuf doesn't know how to suck, or swallow and is not even allowed to have liquids orally. But God answered my prayer in a different way. Thanks to technology, I was able to rent the latest model of an electric breast pump machine in order to express my milk and give it to Yussuf through his G-tube. I should thank also the lactation consultant in sick kids hospital who gave me very good advices on how to keep my milk supply. However, expressing my milk with a machine full time was very time consuming, more than you can imagine. But I was really determined to continue that path, especially when I learned that breast milk help develop the brain. Everybody was asking me to quit since I had enough on my plate already, but I continued praying and asking God to give me strength. I am very thankful now and very happy to say that I am still giving him breast milk. And I am hoping to continue doing that until he is 2 God willing, as God recommended in the koran.

I have to mention also that without the help of my friends who were rotating on me every day to help me with Yussuf, cook and clean the house for me and even feed me since I didn't even have time to eat, there was no way I could continue expressing my milk and I would definitely have a nervous breakdown!

Finally, I managed to talk to the social worker we had at the hospital and explained to her that if it continues this way, I am probably going to loose my mind. She managed to finally have the government personal support workers to come and help me. Also, by the end of this period, the government funds finally arrived and I could use them to help me as well with Yussuf.

I can't finish this part, without thanking my friends again who helped me extensively in this period and didn't stop their rotation on me, until the government help kicked in and I didn't need their help anymore. May God reward you all dear friends.