Nov 30 - photo

more photos at http://picasaweb.google.com/kaitlynham09

-- Today we got to hold Kaitlyn for the first time. Sorry for making Justin Hui wait in the waiting room but this has been a moment we have been waiting for. She slept through it although every now and then she would slightly open her right eye, we call it her pirate eye! It's nice to do all the normal things despite the heavy tubes attached.

Nov 30 - Whole Hearted Hope.

Colossians 1:5 "the faith and love that spring from the hope that is stored up for you in heaven and that you have already heard about in the word of truth, the gospel"...I read a devotional today about HOPE. It said, "in scripture, hope refers to the confident expection of good.
In the New Testament it is linked with two other vital words, faith and love".

Before Kaitlyn was born I had a picture of me on a trapeze and before me was God holding out his arms, calling me to let go of the trapeze bar and leap into his waiting arms. As we have been contending for Kaitlyn I felt that God was again calling us to be WHOLE HEARTED in our love and fight for her. That there was no looking back, just looking ahead with hope and with our whole hearts. When God says He works all things out for the good of those who love Him, I feel that as much as Kaitlyn and we have suffered, that the good is that God has been cementing our love for our daughter...faced with the decision to let her go, it just felt wrong. Who are we to decide to take her life. So our only choice and response was to pour our hearts and prayers into
advancing forward despite the risks. I've been using a devotional called Living Life. This month the focus was on 2Chronicles. As I read about the battles they fought I see how the battles we have faced are like the impossible odds the Kingdom of Judah faced, yet the good Kings placed their trust in God and He won the battles for them. In one battle they didn't even have to fight. The enemies picked each other off so that the people of Judah just had to pick up the booty. It took them 3 days to collect everything. I stand on this testimony that speaks about the kind of God we love and believe in.

Another hard truth I have learned is that working out our salvation in the midst of trials is all about a choice. We just have to choose to stand with God and trust that he is good all the time and that He is a BIG God. These are truths and testimonies given by people at NJ that have impacted me significantly.

Today Kaitlyn had brownish sputum coming up from her lungs. They have sent a specimen to get cultured. They have her on a course of antibiotics right now to be preventative against infection. Please pray for no infection in the lungs as this complication would only set her back.

On Friday the doctor had said that Kaitlyn was not a candidate for life support. The breathing machine that is pumping oxygen into her lungs is a form of life support so I thought that meant they were going to turn off her machine if she didn't recover despite the successful procedure on Friday that saved her life. They had said that this procedure was just buying us and her more time...I clarified these ominous sayings today...they meant that further life support wasn't an option but as it is her current breathing apparatus is adequate...had the procedure on Friday not worked out and she required heavier artillary, they weren't going to be able to offer it to her.
I know one parent here with a daughter on heart/ lung machine that requires 3 nurses to take care of her...I guess this kind of life support would not be offered so praise God that Friday was successful and that she didn't require further or more complex support.

She is resting this week. The doctors assured me that they will take care of Kaitlyn in the ICU as long as it takes. This has been reassuring as I was anxious that they would give up fighting for her if she didn't get better soon. The past 2 weeks seem so much longer.

We gave her a sponge bath yesterday and we might be allowed to hold her today...she smelt like a sweet smelling baby yesterday. The nurse also swaddled her. This simple gesture made me cry because this is the smallest normalcy she has had so far. She was so content and after a wakeful period of flailing arms, the comfort of being swaddled soothed her to sleep. She looked so happy, the way it should be for a baby!

November 30, 2009

Kaitlyn was pretty much resting all of yesterday. Thanks for all your prayers and support. We heard that Ps. Steve dedicated his sermon to the Ham family (thank you). Thanks to the Nam's for taking Lauryn to church. And thanks to our CG and other that came out to support us. I was able to get some of y'all in but now, it looks like they're limiting the room to parents only.

The doctors have said that she'll be needing the breathing tube till the end of this week. The plan right now is for her to rest as much as possible and not pull out the tube too early. They don't want to aggravate her trachea which has already suffered a lot of trauma. There is a chance that when they pull out the tube, her trachea might close shut again or remain open.

We also noticed that her belly was looking pretty big, bigger than usual. We asked and then the docs took an xray. Looks like she just had a lot of gas in her belly. Funny thing was that she kept on farting out her rectal probe. Ha ha ha ... silly girl.

Pastor Steve and Sonya came by today as well. They saw Kaitlyn with her eyes open, she's really cute! She won't be have to get the double eyelid surgery later on in life, she was born with them!

Thanks again for all your love and support. I'll post up photos in a bit.

update 112809

Kaitlyn was resting and sedated for most of the day. She really didn't move at all today. We spent some time with her, talking, praying, and touching her. Her skin is so soft! Here are some more pictures of her.

The tube in her nose is a feeding tube - Mama's milk. The tube down her throat is to help her breathe. She also has a picc line in her arm. This line is pushed through her arm, over the shoulder, and into the heart. It's to adminster medicine (if needed) quicker. The wires around her feet are for monitoring her heart rate, O2 levels, and some other stuff.

A Big Scare

Kaitlyn was in critical condition last night that was a matter of life or death...Her lung collapsed and the obstruction in her throat was the size of a pinhole. They switched the oxygen to helium which is smaller molecule just to give her enough oxygen. In the end we chose to go ahead with the surgical procedure even though the risk was death...leaving her with a pinhole to breath through was certain death too. They said she wouldn't make it through the night...but praise God she made it through the surgery and she is in sedated so she can rest and heal.

Our pastors came (Pastor Steve & Sonya, Dave Ko & Vivs, and Elissa) came to give us comfort and prayers. We decided to go ahead with the surgery. I'd rather go down fighting than doing nothing at all.

Kaitlyn went in at about 10pm and came out at 11:30ish. The surgery went well, she was stable throughout. Right now, she's still in the ICU recovering. The nurses have given her a paralytic drug so she won't move the breathing tube down her throat.

The scariest thing was to decide the fate of our daughter. Either we don't do anything and she might die. Or we do something and she might die. Talk about great choices!

Thank you to the NJ ppl that contended and prayed for her at church last night.

The Hard Truth

Kaitlyn has Trisomy 21 (Down Syndrome). As a result she has a heart defect and they are keeping an eye on her liver function as she has a blood disorder that is similar to leukemia. In baby's with trisomy21, this condition is transient (meaning it gets better on it's own)but it's a 30% chance that later in life she can develop luekemia. She had her first surgery to put a shunt in her heart on Monday night Nov 16th. She is still in the ICU. They tried to remove the tube in her throat on Saturday, Nov 21st but she didn't tolerate it well and so they put itback in. As long as she has the tube in her throat we can not hold her. The tube helps her breathe and is also used to suction her lungs which are wet with all the IV, blood transfusions and extra blood being pumped to the heart.

They did a cardio echogram on Monday, Nov 22nd and they said that the duct that closes in the heart after birth has reopened. This means extra blood is being pumped to the lungs from two sources. The shunt that they put in is supposed to be the only source as the duct is meant to stayclosed after birth. The doctor confirmed today that she will go for surgery today or tomorrow. The first surgery required an incision on the right, this surgery will require one on the left. I did ask thedoctor why they don't just allow the duct to continue to be the source They did a CT scan yesterday to check what the obstruction in her throat is...they have been having trouble suctioning her. At some point the tube keeps getting stuck. Today they confirmed that she has narrowing of her trachea ring. Normally they are C shaped but hers is a complete ring.

Despite all this Kaitlyn is a fighter. She has been stable although it is taking a little longer than the doctor's anticipated for her to come off the breathing tube. As long as she has the tube in she will remain in ICU. The good thing in there is that the she gets 24/7 hour care. The hard part is not being able to be with her all the time oras much as I would like to. I don't like the thought of her lying in the hospital on her own without us nearby...but we can't forget about Lauryn who needs us also. It's hard to be in two places at the same time! I will send photos soon, she is beautiful...she has the Chai blood. She looks like Lauryn when she was a baby...and reminds me the Chai's when we were babies, especially my brother because she has big eyes like he does.

After the c-section they whisked her off so Paul only got to take a photo and stayed with me...from the photo we knew that she had Downsyndrome. I had to stay in recovery for 6 hours because my oxygen was low. They poked me with needles for different blood tests because they were concerned that my low oxygen levels meant I had a blood clotin the lungs as I was on bed rest prior to delivery...(apparently this increases the risk of clots - also I didn't do any of the exercises the nurses recommened I do). In the end they couldn't find anything wrong with me and released me at 4pm...I hadn't eaten anything so after eating dinner Paul and I went to go see Kaitlyn. We were stalling because we were scared to meet her. But when we did go meet her for the first time we fell in love with her. There were up and down days at the beginning as Paul and I came to terms with the change this meant to our lives...and sometimes it still is hard...but we have chosen to not think too far ahead...otherwise it's overwhelming...a lot of her physical limitations will become apparent as she develops but for now we haveto rest in God's grace and goodness and trust in Him one day at at ime. Friends have been helping us by taking Lauryn for a few hours a day so that Paul and I can spend time with Kaitlyn in the ICU. Because ofthe H1N1 flu there is a lockdown and only parents are allowed into theICU. We did manage to get Lauryn in there one night and she met her baby sister for the first time...she cried when we left because she wanted to take Kaitlyn home...it made me cry too because her cry was so sad...I know that Lauryn is going to be a great big sister. I know that she is going to love and protect her baby sister fiercely. Although it's not what we would naturally have chosen, we know that inthe end that God will bring good through this and that He will give us the grace to make it through and raise her up knowing that we love herand that God loves her.Please continue to contend for her in your prayers so that we can takeher home soon and that she won't have another health complicationsthat will prevent her from coming home.

Early Morning Birth

Kaitlyn Faith Ham was born on Fri Nov 13th at 5.05am and was 6lbs 3oz. (2885g - for the Ozzies who measure in kgs). I went into labour early...I had mild cramps start at 10pm...at about 11:30pm I thought it was strange and began to time them...they were coming every 20-15 mins. I called the hospital at 1:30am and they told me if it continued for the next half hour to come into the hospital...I got there at 2:30am, they checked my cervix which was 5cm dilated so they prepped me for surgery and at 5:05am shewas born. It was pretty crazy because it happened so quickly. I don't know if I preferred the c-section. I was so scared the whole time and the anesthetic made me shake like crazy. Paul and the anesthesist had to hold my arms down. I was frozen from the arm down to my feet...very weird experience to be awake but my legs were a dead weight.