He's Home

Sorry, it has been so long since there has been an update. We have been so busy with so many things. Jude came home on St. Patricks Day and is doing really well. It was actually harder to leave the people in the NICU. They really were absolutely wonderful. But, there was one nurse who won us over from the first day. Tom was actually in the delivery room when Jude was born and he asked the Dr. to follow him. Everyone in the green room (NICU room we were in) knew that Jude was Toms baby. At one point we were moved to the PICU because there were too many babies in the NICU. Tom came in to work the next day and was so upset that he was moved. He actually would go over to the PICU and check on him. I guess he yelled at a few PICU nurses because he didn't think Jude was getting enough attention. Luckily, the week before we came home Jude was moved back to NICU. They were still short on space so we actually got moved to the pink room. Tom changed rooms so that he could be with Jude. Not only did Tom get attached to Jude but Chad and I got attached to him. He was so helpful to us. So it was kind of sad leaving but we promised to keep in touch with him.

Jude is on a feeding schedule of every three hours and we have to wake him up to accomplish this. Isn't there some rule about never waking a sleeping baby! He is up to an ounce and a half right now and gulps it right down every time. We do a little therapy everyday, hopefully we are doing it right!! His weight was 4.11 last Thursday and we have a visiting nurse that comes out every week to weigh him and to answer any questions that we have. That is really helpful. But on top of that we have so many other appointments that my calendar is full. I am sure it will slow down at some point, at least, I hope. Noah was so excited the day we brought him home. He is such a good brother. He loves holding him and Jude loves when Noah sings twinkle twinkle little star. Levi is not quite sure what is going on. He tries to get close to Jude but we really have to watch him because he doesn't know his own strength. It is so nice have everyone home even though it has been absolutely crazy. It seems like everything is hitting at once. Jude came home on Monday and on Wednesday we were back at the hospital. That night I had really bad pain in my stomach and my back. It hit me so hard and so fast, I couldn't breathe and was rolling around on the floor. An ambulance came and took me to the ER. Apparently, I have gallstones and I am having my gallbladder out this Friday. We were sitting there and Chad couldn't believe one day home and we were back at the hospital. God also sold our house this week. What a praise! We aren't really sure where we are going but I'm told it will all work out. On top of all of this I am suppose to go back to work on Monday - we'll see!! I am not ready to go back. I feel like I am just getting to know Jude and we have been so busy we haven't had any time to really relax together. So that is what is going on in our lives. Thank you again for all of your prayers and support.

So Excited!

Jude has been gaining a little weight every night! Wednesday night he gained 1.5 ounces and last night he gained only a few grams but hey, we'll take it. After taking a sample and running some tests they determined that he wasn't absorbing any of the nutrients from my breastmilk so they introduced formula. And just after a few days things have already begun to change. Chad and I went up to see him and say goodnight this evening and we were informed that he may be coming home on Monday! It was so exciting! Just hearing those words come off the lips of the nurse was so wonderful. He also was only eating 2-3 times a day on the bottle and the rest of the time he was being fed through a tube because they didn't want him to tucker himself out too much. Basically, if he had a harder time eating then he would be burning off all of the extra calories they were feeding him. But today he took every feeding by bottle. This is a huge hurdle! Down syndrome babies often have a harder time feeding because of their low muscle tone and larger tongues. But, Jude is chug-a-lugging now!! When he comes home he will continue with his occupational and physical therapy. The PT has shown us exercises that we can do with him to improve his muscle tone which has already helped a great deal.

I am sure that this will be another adjustment period for our family but one that we are so excited to have!

As I sit here fighting the urge to feel sorry for myself, I am reminded of Gods love. People all over are praying for us and for that we are so grateful. We have received so many cards, offers for babysitting, meals and even people willing to come over and clean or do laundry. Gods people are so good! I can't imagine what kind of attitude or kind of depressed state I'd be in if people weren't praying. I struggle so much with whys...........why is Jude still in the hospital? Why isn't Jude gaining weight? Why don't I want to go to the hospital and see him? It is so hard to go up to the hospital, spend a few hours talking to my sweet boy, praying over him and then putting him back in his crib, walking out the door into the elevator and out to the parking garage. I feel as if I am living in some sort of bubble. Not able to concentrate on one thing or another, not able to let people in, not able to get enough sleep and so on. Why does it have to be like this? I know God has a reason and a plan and I keep reminding myself that everything is better in Gods timing. Is there something I am missing or something more that we should be learning from this experience? It is such a struggle. Every time I start feeling like this God gives me a gentle nudge and says "Daughter, I am with you always". I am not upset with God or mad about the turn of events in the last few weeks. I have actually learned a lot about people. That is for sure. People in our church and people all over the place are so willing to help and to reach out to us. This in itself has taught me what it is like to be part of a "church family". Of course our earthly families have been such a help and a blessing in so many ways too. I am not really a people person per say but I really want to be able to express my love and my concern for others when they need the encouragement. Hopefully, God will help me in this area too when the need arises, since I usually would run and hide. Anyways, this really wasn't meant to be some sort of sob story. My whole point is to show what God does for us. He lets us come to Him and vent and then lets us know that things are going to be ok. Our little boy WILL be home soon, I have no doubt of that. I also know, when he does come home, we probably won't leave our house for a month because we will be so excited that everyone will be in one place. Thank you to everyone for your love and support and keep on praying!!

3-5-08

So, I know it has been a few days since this was last updated. Not much has happened and we are just waiting for Jude to get some meat on his bones. Jude was losing weight and no one really knew why. 1st the Doctors thought because he had gained weight in the first week maybe he was just a little different and losing it now. 2nd they thought maybe he wasn't getting enough calories from my breast milk so they began fortifying it (just putting more fat in it). And finally they thought maybe it was because he was putting out so much (peeing and pooping). He was born at 4.1, got up to 4.9 and then went all of the way down to 3.13. Today..........he is at 3.15. Hallelujah!! The little guy gained two ounces last night!! The best news we've heard all week. Judes occupational therapist says when he is eating from the bottle he has an amazing suck but he kind of forgets to breath and in then he wears himself out. So they are letting him eat for 10 minutes and then tube feeding him the rest. They say this should change as he matures and gets a little bigger. Please keep praying. We want so badly for this little guy to come home so that we can just get on with our lives. It is so hard leaving him at the hospital even though he is getting great care. It is like ripping your heart out and leaving it somewhere. We are so exhausted!! Chad and Levi both have colds, Noah is still recovering from getting his tonsils and adenoids out and I am just the normal typical mess. Anyways that is it for now but as more things arise we will try to keep you up to date.