Hello everybody! Jack’s continuing to do very well. Last night he slept very well, thus we slept well too. Only a few times did Jack wake up crying, but it didn’t take much to get him to go back to sleep. Not a single alarm went off either. That’s because when the monitor man brought the new monitor (because the memory was full from all the false alarms) , he also showed us how to use the belt instead of the sticky leads. They just were not cutting it. Now the belt holds the leads in place and they have a harder time falling off. It also makes it much simpler to remove the monitor for the occasional bath.

The visiting nurse came by today as well. She gave Jack a checkup and everything was just fine. In fact, she said Jack is doing very well. He was put on a sat monitor and that showed that Jack was at 100%. We also changed his feeding tube while she was here. We still strongly dislike doing this and Jack doesn’t really have a different opinion about it, but the nurse gave us a few pointers that help. We are getting all sorts of helpful hints from so many people, that we are becoming the experts.

He was also weighed and is 6lbs 2oz. We think the pediatrician’s scale was a bit wacky on Thursday.

Jack got another bath today. He still doesn’t really know how to feel about it but he is beginning to not be so shocked when his little butt hits the water. He’s starting to let himself enjoy it. One thing he defiantly likes to do in the tub is peeing.

Good morning everyone! Jack is doing great. He’s adapting just fine to his new surroundings. Yesterday we had him to his pediatrician (she was the one who worked so hard to get Jack intubated and breathing right after he was born) and she was amazed at how far he’s come. He weighs 6lbs, 6oz! It will be strange for us not to get a daily weight on Jack anymore. Some time soon, a visiting nurse will come see Jack here at home and help us if we have any questions.

Jack had a bath last night in his own little tub. He seemed to enjoy himself! We have been snapping all kinds of pictures, so some time soon (if Jack lets us) we will add his new pictures.

Jack is on a 4 hour feeding schedule – this has made life a little interesting for us! We take turns doing the 2am and 6am care sessions and catching sleep when we can. Right now we are spending all of our time on the first floor. It’s working out well for us. Jack is in his bassinet and we can be right next to him sleeping on the sofa and the kitchen is near for when he needs a bottle!

Jack’s apnea monitor is driving us a little crazy! It’s very sensitive and goes off a lot when Jack is sleeping because he tends to breathe shallow when he’s resting. It also alarms if either of the leads come off or slide around. The alarm is loud and piercing and won’t stop until the problem is fixed. We realize that this is a good feature in a real emergency, but false alarms at 3am at the exact moment when everyone falls asleep is driving us nuts. It’s definitely a necessary evil though.

It’s still a little hard to believe he’s actually home! It’s so wonderful to finally have him here. Thanks everyone for your thoughts of us in the last few days. We appreciate it!

Day 84

Day 84

Jack is home! This is the first time that we are updating the website with Jack in clear site. It seems odd because we’re so used to coming home from the NICU and going straight to the computer. This is a totally different routine. Better get used to it, right?

Jack is resting very comfortably in his favorite position, on his belly on his mommy’s chest. He absolutely loves that. If he is crying and if you hold him close, he stops.

Wow! Getting Jack ready to come home and actually bringing him home was extremely stressful. The day didn’t really start off that stress-free either. When we tried to pick up Jack’s prescriptions, the pharmacy informed us that they lost the prescriptions and to top it off, they didn’t even bother to call. AHHH! We have that all straightened out now though.

We really didn’t waste any time at the hospital getting Jack and his things all packed up. We said our goodbyes, signed some papers and off we went. We took his stroller to the NICU, which is really nice because his car seat/carrier clicks right into it. We need that with everything we have to carry. It really is a big job to get Jack’s monitor and oxygen coordinated so that you don’t trip over the cords. And then to get everything into the car is an ordeal. The drive home was a bit stressful as well, but it went quick.

So now Jack is home and he is completely under our care. We were skeptical about whether we were up for the task, but now that he is here we feel more than ready. Of course there will be some difficult times. There will be a lot of appointments, a tight schedule to maintain, and all along with the regular duties of daily life. But, now that Jack is home, we are so happy that none of that matters now.

Day 83

Day 83

Wow, it’s almost here! We can hardly believe it…Jack’s day has finally come! Today was our last visit to the NICU, tomorrow we’re taking our little guy home.

We are looking forward to spending hours and hours spending time together as a little family! We will keep you updated on how he’s doing in his new surroundings.

Day 82

Day 82

Happy Memorial Day everyone!

We had a very busy day today…we cleaned the entire house today top to bottom and got all last minute items in place, so now all we really need is for Jack to come home! We are starting to get so excited, it’s really time!

In a way, we’ll miss the NICU. We’ve become close with some of the other parents and NICU staff. It will be strange not hopping in the car and heading to the hospital. Of course we won’t miss it too much!!

Jack is really trying to finish his bottles! He’s getting better each day so we don’t think he’ll have to have the NG tube very long. The (not-so-little-anymore) guy is up to 5lbs, 12.8oz! He may even reach 6lbs before we take him home. WOW!

We visited Jack this evening and packed up most of his things. We told him it’s soon time to go! He just gave us wide eyes and half a grin. It will be so great to have him home at last.

Day 81

Day 81

Jack passed his car seat test! Good boy Jack! He also did very well rooming in with us last night.

At first it was strangely quiet. We could actually hear Jack breathing from across the room! The NICU is a very busy and noisy place so it was nice to relax in our PJ’s in a private room with our little guy! He didn’t fuss much at all, although at least one of us was tending to him each minute of the night!

He definitely lets us know when it’s time to eat! He either cries or just stares at us while sucking on his hands or arms or clothing or pacifier…it’s the cutest thing. He took about half of all of his feedings by bottle last night. He’s also got a new feeding schedule. He’s getting right under 2oz (56ccs) every 4 hours. He was used to smaller amounts every three hours. He did well for his first trial run on the new schedule. We are getting better and better at feeding him with the tube. It’s really not that big of a deal. Like most things you just want to make sure you have everything you need right next to you before you start! Either that or pick up an extra pair of hands somewhere…

His monitor alarm did go off a few times last night. They were all false alarms. The apnea alarm is very sensitive and won’t always pick up shallow breathing. There’s also an alarm if either of the leads falls off or gets loose so we discovered that as well. And this thing is so loud it could probably wake our next door neighbors! So it does its job, and that’s exactly what we want it to do!

All in all, it’s a great idea to room in before coming home. We feel much more comfortable caring for Jack now. It’s not as scary as we thought it would be. So after nearly three months, home is only days away. It will be the happiest day of our lives

Day 79

Day 79

We had a very busy day with Jack today. We met with the company that supplies the oxygen and monitors. The representative gave us training on both. It felt a little overwhelming at the time, but now that we practiced everything a few times it isn’t so bad.

Jack had his official baby picture taken today. He was a very good boy and even opened his eyes for the camera! We can’t wait to see them – though it may be a few weeks.

We are preparing even more at home. We have a drawer for all of Jack’s medical supplies like feeding tubes, oxygen tubes, tape, stethoscope, and some other things. Even though we never pictured those items would be a part of our lives, it feels better now that we’re all ready to go.

Tomorrow night we are rooming in at the hospital. We are VERY excited for this. It’s kind of a practice run of how it’ll be to care for Jack all by ourselves. We will let you know how it went on Sunday! Wish us luck!

Day 78

Day 78

We heard great news today. Jack is scheduled to come home this coming Wednesday! He weighs 5lbs 8oz already, which is more than enough weight. He still has not mastered eating completely from a bottle, so we have to learn how to place his feeding tube. He will have to continue to be fed at least partially through the tube at home. Hopefully he will get better at eating this week so he can get rid of the tube, but right now it looks like that won’t be the case. Placing the feeding tube sounds a lot scarier than what it actually is. We both placed it today and did just fine. When he is at home he’ll only have to have it changed once a week, unless of course he manages to pull it out or dislodge it himself.

He’ll also be coming home on oxygen. Although we were hoping that Jack wouldn’t need it, it’s not really a shock for us. In addition to his oxygen, he’ll also come home on an apnea monitor. This is actually a relief for us because it provides a small sense of security.

Tomorrow we will get our monitor & oxygen training and Jack will also have his car seat test. It is a big learning day for all of us. And, he’ll also get his official hospital picture taken. Say cheese Jack!

Day 77

Day 77

Jack is still working on his bottle skills! He has taken more today than yesterday so he’s improving. He’ll be home in no time! He’s up to 5lbs 5.9 oz. All of his nurses can’t believe how big he is especially because they don’t see him every day so it’s neat to hear.

He had another head ultrasound this week and it shows that his shunt is really working well. He’ll be seeing his neurologist every so often to track his progress. It’s good to know that his shunt is doing its job.

Tonight we put together Jack’s stroller, after that we only have his high chair to assemble! We are so happy with everything and can’t wait for Jack to use it all.

Day 76

Day 76

Jack is doing great! He is up to 40ccs of food every three hours and he’s up to 5lbs, 4.7oz! He’s such a big boy now! One of Jack’s neighbors is going home on Friday. We will miss him and his parents and we wish them the best! Soon it will be Jack’s turn.

Mommy spends her days taking care of Jack, feeding, bathing, changing and holding him. Dad comes every evening and does the same. We keep picturing Jack at home in his own bed, his own bathtub and his own rocker. It will be very soon. We won’t know which day for sure until two or three days before they plan on discharging him.

He still isn’t taking all of his feedings by the bottle. He’s getting better each day, and one of our favorite nurses says it will just click one day and Jack will finally get it. He’s such a trooper! He’s been through an awful lot at his young age, but we know this will only shape him into a strong-willed and secure person!

Day 74

Day 74

Jack is doing wonderful! He know weighs over 5lbs at 5lbs 1.9 oz. Between yesterday and today he only gained .1 of an ounce, but that’s ok. He is burning a lot of calories just feeding from a bottle.

He still has not mastered that. We know that he is perfectly capable of doing so, however he has not consistently decided to. Sometimes he just falls asleep in the middle of his feeds, so we pour the rest of his milk in a syringe and he gets it through the tube. Every day he seems to get more from the bottle before giving up, and we know he soon will mostly always take the entire bottle and that means he can come home!

We still aren’t completely sure when Jack will be coming home. We are hoping for by the end of the month. We were given a rough estimate of the end of next week when he is 37 weeks adjusted, but at this point it seems that we will have to wait just a small time longer. Although this is somewhat disappointing, we want to be totally sure that Jack is really ready to come home. We’ve been told time and time again by the NICU that they will not send him home until they are very sure that he will do fine at home.

Day 72

Day 72

Jack had his first tub bath last night! The nurse gave him a “Preemie Jacuzzi” by hooking up some tubing to the oxygen and making lots and lots of bubbles for Jack. At first he didn’t seem so sure, but by the end he was smiling and having a good time.

He is up to 4lbs, 15.9oz. Okay, so that’s almost 5 pounds!! I am sure by now he’s passed the 5 pound mark! He’s eating better and better, but still needs a lot of work. He’s working so hard at it!

We’re very happy that soon we will be able to have Jack all to ourselves! It’s getting very exhausting traveling every day to and from the hospital. And lately in the evenings, we’re assembling more of Jack’s gear! We’ll be ready for him to come home soon, that’s for sure.

And as far as the website goes, don’t worry! It’ll be here for quite some time. It will probably embarrass Jack when we’re telling everyone how he went on his first date! We love updating it as much as everyone likes to read it.

Day 70

Day 70

We spoke to his nurse a little more today about Jack coming home. A lot of what we talked about helps us anticipate how it will be when we are Jack’s primary caregivers, but a lot of it also makes us nervous. It will be great when Jack is finally home with us, even though there are so many things to do and remember. Now we are trying to determine where Jack will sleep for the first few nights, how we are going to coordinate sleeping and taking care of him, and how we are going to find time to do the things that must be done to run a home, but we’re sure that most of that planning will have to be changed as soon as the little guy comes home.

Day 69

Day 69

We heard the greatest news today. Jack will be coming home in only 10 days! (Memorial Day Weekend!) That is when he is exactly 37 (adjusted) weeks old. He showed some great signs that he’ll be ready by that time. He took an entire 37cc bottle of milk all by himself each time he was fed today. He also weighs 4lbs 14oz. Only two more ounces till he is 5 lbs!

He also had a hearing test and he passed with flying colors! Even though we expected that he would pass, it is still a relief to know for sure that he can hear.

We got Jack’s Pack ‘n’ Play all put together tonight. It is really cool. It serves as a changing table and bassinette while Jack is young. And, then when he is older, it turns into a playpen. We found a perfect spot for it too…right near the computer in the dining room so he can watch us while we update the journal. Its funny because we only found this spot after we totally rearranged our living room.

Day 68

Day 68

As each day goes by, Jack is getting better and better at eating from a bottle. We are so proud of him. During two feeds today, Jack took a full bottle of milk and didn’t have to get fed through the feeding tube. He used to be on a slow flow nipple, but now he is using the regular one.

He is up to 4lbs 13ozs. The reason that Jack isn’t gaining weight as fast as he once did, is because he is using a lot of energy and burning calories just from the act of eating. It is hard to coordinate sucking, swallowing, and breathing for somebody his size and immaturity. As he becomes bigger, stronger, and more experienced at eating, he will not use as much energy during his daily activities.

Jack’s room at home is really taking shape. His little clothes were laundered and put away. All his new blankets have been folded and put under his crib. And, one by one we’re assembling all the baby gear. Who knew one little boy could have so many possessions!

Day 66

Day 66

What a great day! Almost everybody who has been supporting Jack for the past 2 ½ months had a chance to get together. It was a perfect day and it didn’t even rain. Thanks for all the gifts! They’ll all go to great use.

Even though we were beat from today’s festivities, we still had to go in and visit Jack. He is continuing to do well. Mommy got to feed him again tonight and he took more than half of his food from the bottle. He is getting better and better at eating everyday!

We spoke to Jack’s doctor tonight was well. He is very pleased at how far Jack has come. He told us that if we didn’t already starting getting things in order for him to come home, we better start now! That is great to hear from his doctor. We still don’t know if he will come home of with oxygen or a monitor, but all that is determined by Jack’s progress.

Day 64

Day 64

Jack is off his nasal cannula! Now his is breathing totally unassisted and he’s doing great. The only time that he is put back on the cannula is occasionally during his feedings when he is using up a lot of his energy. This is another major milestone for him. Now all he has to master is being fed completely by the bottle.

We are very excited for the party on Saturday. We’re looking forward to seeing everybody that has been supporting us tremendously for the past two months. There is going to be lots of food and fun. Too bad the little guy can’t come, but daddy will make sure to take lots of pictures for Jack. See you Saturday!

Day 63

Day 63

Jack got a bath today from Mommy. He was wide awake and didn’t cry at all. He actually seemed to enjoy his bath this time. Next time, we should be able to give him his bath in a basin.

He also got a visit from his eye doctor as well and we finally got a chance to have a word with him. It turns out that he didn’t have any additional news on Jack’s vision prognosis, but otherwise reiterated that only time will tell. Boy have we heard that a million times. He said that he did see patents with the optic nerve atrophy that hardly showed any signs of vision impairment. That was good news for us. He also said that it was very good that Jack responds to light, which is basically the only indicator of Jack’s ability at this stage in his life. It is far too early for him to follow objects or even really focus on anything. That will come a month or two after he is home. All we can do now is try to stimulate his vision by placing objects of high contrast in front of him. We are already doing that as anybody can tell by looking at all his stuffed creatures.

Jack also got a visit from the feeding team, who are basically occupational therapists. The assessed Jack’s ability to coordinate sucking, swallowing and breathing while being fed. They did find that he does have an immature suck-swallow response, but that is due to him being so young. They set strict feeding guidelines and restrictions such as only feeding him for 15 minutes at a time from a bottle. The rest he will have to get from his feeding tube. They’ll continue to monitor his progress and help us take the necessary steps to get him 100% on the bottle. Of course this is one of the major milestones that he must reach in order to come home, so we are hoping that he does this in a few weeks

Day 62

Day 62

Jack is continuing to progress great. He got a head ultrasound and his neurosurgeon said that his ventricles are decreasing in size, which means that his shunt is doing its job.

Not much has changed since yesterday. When we visited him today it was clear that he is soon ready to come home. He was trying to pry off his nasal cannula which was at just a bit above room air and was wide awake. We think he is getting bored in his crib and wants to see more of the world. We assure him that this day will soon come.

Day 61

Day 61

Boy did we get some great news on Jack’s 2 month B-day! One of his nurse practitioners said that since Jack is doing so well, he will most likely be able to come home in 2-3 weeks…definitely before the end of this month! All he has to do is continue to grow strong like he has been doing for a while now.

His neurosurgeon stopped by today and was very impressed by how well he is doing. He felt his head and said it feels great and the shunt is working perfectly. He’ll have another head ultrasound to confirm this.

Soon we have to take his car seat into the NICU and Jack will be put into it for an hour to see how he does. This tells if he can keep his airway open in a sitting position for the entire car ride home. We will also be able to “room in” with Jack at the hospital called the rooming in room. We will be in a private room with Jack over night so we can get used to having him almost completely under our care. He will still be on monitors so if we do need the nurses, they can quickly come to our assistance.