The Great Judeini

Our little guy is growing so well. He is up to 8.12 ounces! He is eating 5 ounces every three to four hours and is filling out quite well. He actually has chubby cheeks. Two weeks ago we went to the physical therapist and she said that he has no known delays and I started to cry. It was so awesome to hear that. The therapist said she couldn't even make up a reason to see him again as bad as she wanted to. She worked with him the hospital every day before we came home. We do his exercises everyday but when you see him on a daily basis it is hard to see them working. The Early On program is supposed to start coming really soon. We have had some set backs in getting this started since we moved. We sold our house during this whole experience and moved to Lansing with my mother. There is a whole new team of therapists here in Lansing than there would of been in Holt. So basically we have to start all over. We have had a visiting nurse coming the last few months who was so helpful. She would weigh him and check out his heart every week. It has been really convenient and helpful to be able to see his growth and to be able to ask questions. Last week was his last appointment with the visiting nurse. It is so exciting graduating from one thing to the next but also sad because you get so used to the people. Last Tuesday Jude was seen in Ann Arbor by a Pediatric Ophthalmologist and passed his test with flying colors. We have had so many appointments with so many different specialists it is hard to keep track but Jude is doing awesome!!

Our next steps are just to get him caught up on weight and to get his therapies going. We have a few appointments a month with his pediatrician and a few follow up appointments for his heart, hearing and vision.

Jude is such a sweet little boy and so loved. We all adore him and are so greatful for his progress.

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.

Update

Jude is doing really well! He is now out of the icelet and into a big boy bed!! He is eating 37cc (1.25 ounces) every feeding. They are actually alternating a feeding tube and then a bottle because Downs babies get really tuckered out by eating. As of yesterday he is off all oxygen and the nasal canula. Now he needs to gain some more wait because the last few days he has lost a few ounces. He was up to 4.77 and last night he was at 4.3. I asked if I could fattened up my milk by eating hostess cupcakes but the nurse swears that won't work. Worth a try?

We really aren't sure when the little guy will get to come home yet, it just really depends on how well he is eating and gaining wait. He needs to eat from a bottle every feeding in under 30 minutes for 48 hours straight. As he gets some wait on and gets a little stronger this will get easier for him.

We can't wait until we can bring him home and let him meet his older brothers. We are so anxious just to have a normal day at home. It is so difficult leaving him at the hospital even though we know he is getting really good care. We are so tired and the boys don't understand why we leave them every night to go to the hospital. It is so tough either way. Anyways, thank you everyone for all of your prayers and support. We appreciate it very much.

Our Miracle Baby

Our dear baby boy, Jude, came into this world in a way that can be only described as a miracle!! He has had a rough start but is fighting for his next day. February 16, 2008 the day the Lord had chosen especially for our little boy. The day started with contractions 4 minutes apart from about 6:30 am. Chad and I started to the hospital around 1pm. Taking our time not knowing if this was the real deal or not. We walked into the hospital and they got us in an observation room. Hooked up to monitors they decided to an exam. What did they find? I was dilated to about a 4 and something that felt like a hand or a foot slipping through. They wanted to make sure so they did an ultrasound and there it was on the screen one lonely foot! So, the obvious decision came......a cesarean section. Chad was kind of sad. He wanted to see his third born son come into this world like our other two beautiful boys. I was hopeful and felt at peace. The nurse left to go call our Doctor and to schedule the c-section. She came back in shortly after and noticed the monitoring screen was flashing but no alarms were sounding. Something was happening. I started to feel a weird feeling and she ran out and called for the Doctor. Chad and I still not knowing what was happening. The Doctor came in and said the baby was coming fast and we needed to do an emergency c-section. Chad following behind with our stuff.......the last time we saw each other until after our baby was born. I was suddenly in an operation room praying out loud, knowing that no one could even hear me as everyone was yelling and there was so much confusion. Big lights on the ceiling like the ones in movies is all I could see. Next thing I know the people aren't yelling at each other they were now yelling at me. "Push, Push......come on"! A different person holding on to every part of my body while I lay half way on the operating table. Still.........no Chad. My earthly rock, my best friend, my husband standing alone in a hallway with Doctors and Nurses passing him in flocks. Patting him on his shoulder giving him no hope, no news.....nothing except from the screaming from the room is all he heard. He finally told one nurse who passed him "If you go in there and don't come out in less than 5 minutes to tell me what is going on, I am busting through those doors." She came back a few minutes later and told him that baby Jude was delivered feet first. He couldn't understand.......I was just going in for a c-section. She told him that the baby didn't have a heartbeat and wasn't breathing on his own. And now Chad was no longer breathing! Confused and alone he wanted to make sure I was ok. I was fine besides the fact the my baby boy had been stuck and I couldn't muster up enough energy to get him out. Still praying out loud the Lord gave me the strength and peace! Chad was finally able to come in and see us. He kissed baby Jude and came over to check on me. They held baby up so I could see him for a few seconds and for a moment it seemed like the 16 or 17 doctors and nurses were no longer in the room. Just Chad, me and our beautiful baby boy just starting the fight of his life. They swept our precious baby away and took him the RNICU. They were able to resuscitate Jude and his heartbeat picked up on his own. He was on a ventilator for about 5 hours and then started bucking the vent (breathing above it). They were able to take him off and were able to run more tests on him. Chad was able to go see him and stood in awe of our little fighter! They still wouldn't let me come see him because he had so many wires and so many things attached to him. They noticed that he looked a little different and had discussed with Chad the fact that Jude may have some sort of syndrome (like downs). They are running tests on him now but he is doing so awesome. Every day he gets stronger and is doing better. There are so many things that are affected by his very rocky start, too many to list but our miracle baby is alive and is as handsome as ever. That is all that matters! He nothing but a little angel struggling to make it every day! It is so hard to leave your baby at a hospital, even when you know he is getting the best care. And at the same time coming home to see my other two little guys is the greatest feeling. However, Noah is a little confused why his little brother isn't at home and why he can't see him at the hospital. He wants to hold him so bad and he saves the best of everything (even lifesavers) for baby Jude. He kisses and hugs the camera of pictures of baby Jude. He is a sweety!! Levi of course has no idea what is going on and just keeps thinking of when his next meal is (If you know Levi you understand what I am saying). Chad and I both are happy to be home but feel as if a piece of our family is missing. Our home will not feel like home and our family will not feel complete until the day we get to bring our third son home. If I can just say one more thing..............My husband is the greatest, strongest, most loving man in this world. He has completely taken over. Asking the doctors every question he can think of and explaining everything to me. He is helping me in every way to understand and to be encouraging to me. Holding me up when I feel as if I am falling apart, all the while feeling the some of the same things I am.

We know that God has perfect timing in everything and has a perfect plan for Jude and for our family, no matter what the outcome, He has graced us with his love and mercy and He is sufficient in all ways according to His purpose and His will. Let us remember that always!!