Home Sweet Home

Emily was tranferred to the normal ward in IJN since last Saturday, after 7 days in ICU. I stayed with her until she was discharged yesterday, 10 days after her operation. She has improved tremendously in the last few days. Her lungs improved and they finally took off her oxygen successfully after trying for the last few days. I was also worried about her feeding too. She has been too long feeding by tube that she has forgtten how to suck and swallow. I tried relentlessly and finally, she got it! I was elated. It was drastic improvement from day 9 to day 10! I though we would need to stay another day or two but the nurse told us we can go back yesterday, yeah! Finally!

Emily is home and doing very well, feeding like a pro. I bathed her for the first time in many weeks, she wakes often for milk. She is having a special diet with low fat for 6 weeks because of side effect from the surgery. So I have another issue. I have been expressing milk and storing it in the freezer and I am running out of space! I am thinking of buying a freezer or my milk will have to be discarded. What a pity that would be.

Need a bigger freezer!

Anyway, we need help with the care of Emily. I am hoping to get MIL and my mum to help out till the maid from Phillippines arrive in a few more months. But I am so very glad and grateful that Emily is home now after staying nearly all of her 2 months of new life in hospitals. Looking forward to a more routine and normal life for all in the family.

Getting Better

25th May:Day 6 at ICU. Emily is getting better and she has been awake more often when we visit her. She is trying to move but her hands are pinned down. Doctors are trying to wean her off the ventilator. Her heart has been healed but her lungs are not that well yet. I will be seeing her again this evening and I really hope she has been successfully weaned off the ventilator. Pray Lord, please let her be weaned off the ventilator.

Although she looks better now that her water retention has subsided, she still looks very uncomfortable being restricted from moving her limbs and I cannot cradle her in my arms. I really hope she can get out of ICU soon so she can feel mummy's touch and embrace again.

Mother Mary, please help bring Emily's plight to our Father in heaven. Please intercede for her, ask our Lord to have mercy on her and let her recover quickly. Please let her come home, she has been away from home for 7 weeks now, staying in hospitals.

I ask this through Your son, Jesus Christ, Amen.

I am in Holland!

I started working today, after 2 months of maternity which was spent largely in hospitals. Emily is still in the ICU of IJN and I will go see her later in the evening. My hubby is on leave and will see her in the afternoon.

Yesterday, her condition did improved. Her lungs are better but she still needs some help with the ventilator. Her chest has been closed up. She was awake for a short while but then they started her sleeping medicine again so she went off to sleep again. I miss her now that I am in the office. Will check with my hubby about her condition in an hour or so.

As I was too free while waiting in IJN yesterday, I went to visit the national library which is just opposite IJN. When browsing through the bookshelves, I came across a book by chance that talks about mothers with disabled children. In it, there was a mentioned about a poem that depicts the experience of parents when they find out that their babies have some disabilities. I googled it up and here it goes:

Welcome to Holland

by Emily Perl Kingsley

Holland is beautiful in her own way...

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome To Holland”.
“Holland?!?” you say, “What do you mean “Holland”??? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes that’s where I was supposed to go. That’s what I had planned”.
And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very significant loss.
But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

Well folks, I am in Holland and I will do my utmost to make sure I enjoy it thoroughly.

Post Surgery

21st May: Emily had her open heart surgery yesterday. She was brought into the OT at 7.30 am and came out of it at about 12 noon. It took an hour longer than expected.  There were some unexpected complications with her lungs and the surgeon left her chest opening unclosed. The enlarged lungs may built up pressure in the chest cavity and that mat affect her heart. Both hubby and I got quite worried when the surgeon explained what happened to us, especially when he left the chest unclosed! But looking at another patient with similar situation, I felt better that it is not that uncommon. 

Today, I came to see her in the ICU and she is much much better. The nitrous oxide gas that helped dilate her lungs has been weaned off and she is off the ventilator. Doctors planned to close her chest today! However, she is still in ICU and they will continue to monitor her closely.  I have been waiting in IJN after the afternoon visiting hours so that I can see her again at the evening visiting hours. So tired, wants a nap but there is no where to sleep. I did however, managed to find nursing rooms for me to express my breast milk. Another great thing in IJN is they have free Wifi through out the place! That is great! I can at least get on Facebook and surf for free here while I wait.

Night before Surgery

19th May Tomorrow, Emily will undergo open heart surgery. This is what is required to cure her heart and also what we have been trying to arrange for her. Finally, the operation will be done in IJN early tomorrow morning. We have done what we can and now I with confidence, leave everything to the Almighty.  I am both glad and slightly worried. As with any surgery and especially heart surgery on a baby, there are risks. But it's harder on her to continue on without surgery, so this has to be done. As I said what needs to be have been done, we can now only trust in God and ask for family & friends to pray for Emily for a successful surgery tomorrow.  I pray for her with the prayer below: St. Gerard, who, like the Saviour, loved children so tenderly and by your prayers freed many from disease and even death, listen to us who are pleading for our sick child. We thank God for the great gift of our daughter and ask Him to restore our child to health if such be His holy will. This favour, we beg of you through your love for all children and mothers. Amen.

IJN, Long Awaited...

May 17th: This is a date we have been waiting for, our 1st appointment at IJN after almost 1 month of waiting in the ward. In between, we have consulted Gleneagles's Dr Lim twice. He is pretty famous in the field of paediatric cardiology, everyone in the same and related field seems to know or heard of him. He is very nice and explained everything well to us. We wanted very much to put Emily under his care but both my hubby and my company do not cover the cost there :(. Which is why we wanted to have a go at IJN to see what options we have.  Finally, the day came. The ambulance was 2 hours late and we reach there at about 11am when we were supposed to be there at 9am. But it was fine, we did not wait too long to see the doctor. The diagnosis confirms gleneagles finding that Emily has 2 large holes, one between the atriums and ventricles each. Operation must be done to correct them. They told us to go back and wait for an operation date which will most probably happen in 2 to 3 weeks time or earlier if there is any cancellation of surgery. I was reluctant to go back with that and asked since my hubby's company can cover the cost & even we are willing to foot the cost ourselves, can we get a faster date? To my delight, he made a few calls and said YES!  We are to meet the surgeon in IJN tomorrow  and I think we will get the operation date and estimated cost. I hope the operation can happen early next week.  Meanwhile, Emily although is pretty stable and eating well, is beginning to have problems in her lungs because of prolonged oxygen dependency. She is on asthma like medication for that. That got me really worried. We cannot stay in the ward like this much longer or other problems may start creeping in. So I am really hoping we can have the operation done very soon. On the bright side, her weight is now 3.2kg. My feeding efforts in these few weeks paid off! Really want to bring her home and begin our usual routine life. Staying in the Hospital makes me a bit mixed up. I tend to lose track of time and forgets the last hour that I fed  her! Gotta get out of here soon, praying so.

Ambulance Ride Again

7th May: Still in the hospital. We had a follow up appointment at Gleneagles today, again we took a ride in the ambulance. Hubby drove himself there cause we were told there was no place for him in the ambulance. But there was one seat empty but never mind.  Doctor there advised to go ahead with the operation as her weight gain is slow and she may risk getting infections staying in the hospital for longer. We decided to still consult IJN which we have an appointment in 10 days and if IJN cannot do the operation in the near future, we will go ahead with Gleneagles. Probably at the end of the month.  Otherwise, Emily's condition is pretty stable but we still cannot go home. Her weight gain is not as fast as I hope, she is still on medication  and my leave is coming to an end. Not sure what to do still. Might have to leave her with the nurses for a week or two when I start work and while waiting for the operation. Will need to discuss this with the doctors here.

It's True...

1st May, 2012: I got some sleep last night, not much but still felt today is a brand new day! I think I can digest the news or rather the dreaded fact that I have been hoping was not true. Emily has Down's Syndrome.  Many prayers had been prayed, asking for a miracle so that my Emily will not have the syndrome and is as normal as her brothers and sister. But alas, our prayers were not answered. God must have a better plan for us. That's why HE gave us this gift, the gift of Emily. I may not know now the real extent of what this gift will mean to me, to the rest of the family and extended families. But I know God has His reasons and I truly believe it will be very good reasons which we do not know yet.

I have been thinking about the start of this whole journey. From her conception, some how I knew. I have been given many signs but I still tried to avoid worrying when it wasn't fact yet. I know at my age, the risk of having a Down's baby was pretty high. We have in fact been avoiding pregnancy for years now since my 3rd baby. But by one irregular period and therefore miscalculation, I ended up pregnant for the 4th time. I immediately got worried and read up a lot about Down's. I even read about other genetic disorders which some of them were even more serious than Down's. But I keep pushing this aside and tried to get on with life as usual. As I did that, I felt that I did not have a connection with the baby in my womb. Somehow, I did not relate to this baby like I did with my earlier pregnancies. I felt guilty at times for feeling that way.

At 20 weeks, the gynae told me of the risk and asked if I wanted a blood test. Hubby and I thought about it and both of us did not think it necessary cause there is nothing we can do about it even if we knew. I rather know later than earlier. Later on, my ex-classmate added me on Facebook and I saw she has a daughter who has Down's. That again triggered my worry about my Emily. Then many times in Church when I see families with disabled children and I admired them for their strength in dealing with the difficulties. I wonder how they do it. 

When Emily was born unexpectedly at about 5 weeks earlier than the due date, I noticed her eyes were a little different from the rest of her siblings. I asked my hubby if he thought there was anything different and he said no. So I brushed aside the inkling feeling again.  Finally, one paed told us her suspicion, when Emily was treated for jaundice at 9 days old. We were both worried sick and got more devastated as we find more characteristics on her that indicates she has Down's. It has been awhile since I saw my hubby shed tears, and I was crying quite a great deal too. We opted to go home without doing any test after Emily completed her phototherapy. 

We hoped against hope, prayed more fervently, talked to the priest for guidance and blessings. Finally, after thinking long and hard, I decide to refer this suspicion to the government clinic when we followed up on her prolonged jaundice.  We ended up in a hospital ward since and she has also been diagnosed with congenital heart prob which requires corrective surgery. This will be the 1st ordeal and a major problem that we need to resolve. There will be other health and learning issues, related to her condition, to come. I have been staying in the ward with her for coming to 3 weeks now. I use this time to bond with her, making up for lost time. Next, I will be telling concerned family members & friends this piece of news.  Emily, we are in this journey together and we will take one step at a time. With love, mummy.