Sunday, May 25, 2008
Friday, May 23, 2008
WE'RE HOME!!! After 19 days in the hospital, and 16 days post surgery, Andrew was discharged yesterday afternoon. Before he was born the surgeon told us it would be a 3-4 week stay and the neonatologist told us it would be a 6 week stay. Less than 3 weeks later, we are home and Andrew is doing good. His white blood cell count has fallen into the normal range and his bilirubin is slowly coming down, although he still looks kind of yellow.
This will be the last routine update I send out. The feed back I received about these was very uplifting and I am glad you enjoyed receiving them. It was very therapeutic to sit at a computer, process all the information and then write about it. Our family has received many blessings since all this started: prayers, my coworkers vacation hours, babysitting, meals, and financial gifts...as well as things as simple as paper plates and bowls so I wouldn't have to do as many dishes when Chris was on bedrest. I can't begin to thank people individually here but thank-you notes are forthcoming—as well as a birth announcement!
In the Old Testament book of Jeremiah (29:11-13) Jeremiah (speaking for the Lord) says: “ 'For I know the plans I have for you', declares the Lord, 'plans for welfare and not for calamity, to give you a future and a hope. Then you will call upon Me and come to pray to Me, and I will listen to you. And you will seek Me and find Me, when you search for Me with all your heart.' ”
Our pastor referred us to that verse in April when Chris went on bedrest. At that time it had been confirmed that Andrew had Down Syndrome and would need surgery.
Andrew is more that a baby with DS or special needs. He is simply special. I could see where it would be difficult to face not having the 'perfect child' if our hope was not in Christ, but it is. Andrew is the perfect child for us. Perfected in the womb by God's hand. We are thankful for him, no matter what. I can't wait to see how he develops and to introduce him to all of you.
Thanks again for everything,
Wednesday, May 21, 2008
Andrew is doing good and looking good. The plan is for a discharge tomorrow! When he goes home we will need to keep teaching him how to eat, and when he does not finish a meal, place a tube in his mouth to his belly and tube feed him the rest, then remove the tube. Sure would be nice to have a good nurse at home! He tolerates this really well and we have a received a number of admirations from the nurses on what a well-behaved, mild mannered baby Andrew is. God has been so good to us.
I plan on taking a week more off of work after we get discharged, to get Jonah and Ben back on schedule, get some yard work done, and help Chris with Andrew. I can't believe we are close. I know things may changes, but Andrew has had several good days in a row and we feel confident that we can provide good care at home.
I will continue to update you until we are home.
God bless all of you,
Friday, May 16, 2008
Well, yesterday was another tough day (better today though). Andrew had a white blood cell count of 39,000 yesterday and was referred to a hematologist (blood doctor). All kids with DS have an increased risk of leukemia and a high white count is one the factors. We worried pretty much all day! Also Andrew's bilirubin level was 15.9 so he was taken out of his crib and put under phototherapy lights and back into an isolette. It was a struggle to get through the day. The boys came up and stayed at the hospital with us last night—it was the first time in two weeks we were together as a family. Anyway, the hematologist is not worried about leukemia at this time, and basically feels like he will do fine, but she is going to continue to follow Andrew and check his levels every other day. She did say that he may still get leukemia one day (she doubts he ever will right now), but that for some reason kids with DS respond much better to chemotherapy than kids without DS, so his prognosis would be good.
His bilirubin level is down today and the lights are off, and that will get rechecked tomorrow. He is feeding from a bottle his full amount and today Chris gets to start nursing him. Andrew struggles with it—forgetting to breath and setting off the alarms like crazy (it sounds like the Grandma Kelley Room at Soaring Eagle in there)! Twice I have fed him and watched his heart rate drop tot he 30's because he is not breathing and he turns a sickly shade of blue that scares the daylights out of me. He's learning though.
We've been told that a discharge next week is possible, but I think it would be late next week. He's still on one IV antibiotic (Vancomycin).
Please pray that Andrew's white blood cell count drops tomorrow and that he gets the hang of nursing soon (with DS it can take awhile, plus he is a premmie).
Until next time,
In His name,
Wednesday, May 14, 2008
The expression “No news is good news” has been fairly true for us this week. On Wednesday morning Andrew was taken off of the CPAP and has not needed any mechanical assistance with his breathing at all. Occasionally he will forget to take a breath and sounds the alarms attached to him, but he usually fixes himself pretty quickly.
Yesterday his oral suction tubes were removed and he was started on oral feedings of Pedialyte. He did well, except he forgets to breath while he is eating. Today he was started on bottle feedings of all the breast milk Chris has been pumping. I got to feed him twice today, which is something because I was never able to feed Jonah or Ben because I don't lactate! He is doing very good so far. The nurses have warned us that feeding is an up and down thing so we may run into vomiting problems, constipation, or something.
He is finally losing all the water weight he has been carrying, so that is good news too. Also, tonight he was moved into a crib instead of the isolette he has been in. Right now, things look good. HE is an adorable little boy.
Thank you for all the prayers. I have not been as discouraged since I sent out that bummer of an email. We know that no matter how Andrew grows and develops, that God is real, He is kind, and he loves his children (even the old ones).
Please pray for Jonah and Ben. They are having a tough time with not seeing Mommy and Daddy very much, but they are going to spend the night at the hospitality house with us tomorrow night if everything goes well.
Also, another praise (besides Andrew's good news)! I found out today that my coworkers have given me a combined 107 of their vacation hours in order for me to be with my family and still be able to provide. It is very humbling and I am forever grateful.
Monday, May 12, 2008
Well, Andrew was taken off of the CPAP this morning to see how he does. If his heart rate or respirations start to slow down and set off the alarms too much, they'll put him back on it. Also, they may start feeding him tomorrow. Currently he has a tube in his mouth that is sucking out the stomach juices. They took him off the suction this AM and if he has no problems (vomiting, abdomen getting bigger), they should pull that tube tomorrow and replace with another oral feeding tube and start giving him small amounts of breast milk that Chris has been pumping and freezing. Usually they start real slow (1ml/hr)-less than 2 tablespoons in 24 hours.
Andrew did end up having a blood infection, and they are treating that. He's down to one antibiotic, but will need a spinal tap in a few days too make sure the infection didn't go into his spinal column.
Finally, he has been retaining fluid (probably related to the infection), so he's been getting Lasix on and off. For you medical people it's a whopping 2.7mg! I've given as much as 120mg to adults in congestive heart failure. The minuscule amounts of drugs these kids get are almost laughable.
Things are progressing along. Thanks again for the—everything! We are blessed. I can't wait to tell Andrew all about the prayers he received when he was in the hospital.
Saturday, May 10, 2008
P.S. Had a wonderful time with Jonah and Ben last night!
Friday, May 9, 2008
It's apparent God has us on a journey. Yesterday we enjoyed the high of a good day, today we are riding out a bad one. Andrew had some trouble breathing last night and this morning was put on a CPAP machine—too hard for me to explain...it gives him pressurized oxygen to help his breathing. The next step, if needed, would be a vent. The upper portion of his right lung has some fluid on it. He may also be getting an infection, but probably not from the incision. He was started on a new antibiotic today for that.
I won't lie. We are discouraged today. The big picture says God has a plan for us and Andrew, and will bring good out of this. The smaller view finds us trying to lean on Him for today. Sometimes that is difficult. I am going home to spend time with my older boys. Chris will be at the hospital with her Mom and brother (her brother flew in from New Jersey).
Continue to pray for Andrew. His little body has been through alot and will continue to.
Pray for strength for today for Chris and I.
We love you all,
Thursday, May 8, 2008
Chris and I were up late to watch Andrew get taken off of the ventilator at 1230AM. He has done very good since. This morning we are tired but very encouraged. With a Down Syndrome child we have read that it is important to celebrate every achieved milestone-for me today feels like celebration day. He still has a long way to go, but things are looking good. Thank you for the prayers. We received one email telling us that Andrew was being prayed for around the time he was having trouble with his breathing! Thank you God for your saints.
Thanks everyone, for everything.
Wednesday, May 7, 2008
It's Friday morning and Andrew had surgery yesterday to repair his atresia. He also had malrotation of the intestines (basically when the intestines were forming they more or less didn't position themselves properly nor secure themselves to the abdominal wall). They fixed that as best they could (they don't expect any problems with it) but as a result the intestines now sit opposite, but securely fastened, as they normally would. They ended up putting his appendix on the LEFT side-so they removed that too. All that to say, the surgery went well. He is however still on the ventilator. Last night was a hard night as he had some problems and his oxygen level kept dropping and his carbon dioxide level was rising. Part of this is because he was doing so good after surgery they tried to wean him off the vent too soon and he was not awake enough from the anesthesia, so his body wore out trying to breath so much. Needless to say, Chris and I were up late with him. If anyone felt prompted to pray around 9 PM last night, thank you. Andrew started to turn around for the better at that time. He got pretty stabilized around midnight and so we went to bed. This morning he is finally starting to wake up and they are SLOWLY lowering his vent settings, but I think he will be on it all day and maybe through the night. His tiny 1.5 inch incision is a little reddened today, so we are watching that. He does not have a fever.
Chris is doing well. She will be discharged this afternoon. She is still having pain. I watched her c-section and I have a newfound respect for her. At one point while sewing her up they took her abdomen and folded it back over on itself to look for bleeding (to get my meaning take your shirt and fold it up to look at your stomach. That folded over shirt was how her stomach looked!) It was cool!
Anyway folks, please continue praying for us, especially:
That Andrew will get off the vent safely and as soon as healthily possible.
That he recovers quickly, with no infections. The Dr. said it would be 10-14 days before they give him food.
For Chris's health and our stress and anxiety.
Thank God for all the help, support, prayers, food, babysitting, etc.
We are fortunate to belong to the body of Christ, which extends beyond Muskegon. He has been good to us.
Monday, May 5, 2008
WOW! Chris calls me at work on Monday night and says I should come home because the Dr. wants to see her in the hospital due to some more contractions. I punched out at 5:15 PM , picked her up at home and drove to Spectrum Butterworth Hospital in Grand Rapids by 6 PM. It was kind of a fast ride! The next thing you know they say she is in active labor and at 7:21 PM Andrew James Kelley came into the world by c-section. He has some Down Syndrome features, but is beautiful nonetheless. 50% of Down Syndrome kids are born with heart defects, Andrew has none (as evidenced by an echocardiogram)! Also, they did an ultrasound of his head because an old ultrasound showed mildly enlarged brain ventricles, and that was normal too! They also did a kidney ultrasound and one was a little small and the other a little big. So far no one seems worried about that, but he is whizzing up a little yellow storm! If not for the duodenal atresia (obstruction in the small intestine), we would be going home soon.
As it is, he is having surgery to repair the atresia Thursday morning at 11:45 AM. Please remember him at that time. Surgery should last 2 hours. After that it's all recovery time, which will take a few weeks.
Chris is doing good, walking around some and eating. She should be discharged on Friday and we plan on staying at the hospitality house attached to the hospital.
Thank you all so much for your prayers. God continues to provide more than we need, and has blessed us with a beautiful son.
Saturday, May 3, 2008
As most of you have probably heard by now, our baby (Andrew), will be born with Down Syndrome. He will also most likely require surgery to fix the obstruction in his small intestine after he is born (probably the next day). Chris is doing well. All the IV's were removed this morning. She still has some contractions occasionally, and the Dr. still plans on sending her home on Monday. Our emotions are mixed...and up and down. We feel prepared for this and like God has chosen us for this awesome responsibility, but like any parent, we are dealing with the disappointment of not having the “perfect baby”. Overall, I think we are at a good place.
The next month will be spent educating ourselves and asking alot of questions. I don't know what we need spiritually right now, so please pray as God would lead you. All we can do right now is step out and trust Him. We know His mighty hand has been with us from day 1 and he has been preparing us for this for longer than we will probably know. Pray for Jonah and Ben as this will disrupt their lives for awhile with Mom and Andrew in and out of the hospital. I am sure God will use this little one in a powerful way in our family.
Thank you for all the prayers, visits, phone calls, treats and child care. We are truly blessed.
Well, it's been an eventful week! First, a complete update. Chris had scant spotting on Tuesday morning, and then on her way to a previously scheduled OB appointment that afternoon started to have contractions. At that time she was dilated to 1cm. So, off she was sent to Hackley Hospital for fetal monitoring and it showed her contractions were 1-2 minutes apart, but they were weak. They watched her for two hours and rechecked her, and she was dilated to a 2. They then started her on Magnesium and some steroids and at 1130pm it's off to Grand Rapids by EMS we go! She is getting the Magnesium to stop the contractions until 6am Friday morning. The contractions have really slowed down. An ultrasound at Spectrum-Butterworth Hospital showed 41cm of amniotic fluid (alot). It also showed a duodenal atresia (obstruction of the duodenum causing increased fluid, leading to cervical dilation). She had an amnio-tap today (they drained a liter of amniotic fluid), and they are going to test it for chromosomal disorders-they are very suspicious for Down Syndrome. We should have some results by tomorrow afternoon. Also, if the baby is indeed born with this atresia-thing, then it would most likely require surgery.
So the long term looks like this:
Hospitalized until Monday with a couple more taps (drain amniotic fluid) planned,
5-6 weeks of bedrest for the wife, then
3-4 weeks of neonatal ICU for the baby following birth if surgery is necessary.
Right now, Chris and I are tired but slowly catching up on sleep. We are experiencing God's peace and are confident He will see us through this. Thank you for all the prayers, phone calls, and words of support. Some folks at our church are going to set up some meals for us and someone to stay with Chris and the boys on days I work. The Dr. told her that she cannot take care of them alone. He did give her permission to go to church, saying that that was the “best place you can be.” Otherwise, next week you can find her at home in a chair reading a book and eating bon-bon's! Until she gets home you can feel free to visit her or call her (we do sometimes unplug the phone for rest), in the hospital from Friday to Sunday...just maybe call first before visiting. She should be discharged early Monday morning.
Thanks again for the prayers and keep it up. Right now we are especially praying for no chromosome abnormalities, but are happy for whatever we receive.