Final Caring Bridge Post

This is it! This will be my final post on Jacob's CaringBridg

e website. Our new blog is up and running and you can check it out at http://thelittlechickenwing.blogspot.com

This will be more of a family blog and is to keep you updated on the current events of the Stewart Family so feel free to subscribe to the updates or just check it out whenever you feel like it if you don't want to receive e-mail updates.

Thank you again to all of you for your support, prayers and encouragement during our time of need. I've been thinking a lot lately about the day Jacob was born. Instead of the sheer excitement most parents experience during the birth of their child, Ian and I were terrified, anxious and nervous wrecks. It was great to come here not only to update you all on Jacob, but to have a place to write it all down and get some things off my chest.

I am excited that this journal will be a book and that someday, God Willing, when Jacob takes his first steps, climbs the bus to Kindergarten and heads off to his Junior Prom that I will have these memories to look back on and remember how so many people were there for us when we needed it the most.

Please feel free to leave any final comments in the Guestbook because they will be published in the hardcover book! Thank you again and I hope to see many of you over on our new blog.

Moving to Blogger!

One year ago tomorrow Ian and I found out we were expecting our first child. What a difference a year makes! Jacob will be 7 months old on Thursday and I can't believe that a little over 3 short months ago he was still in the hospital. It seems like so long ago which I am sure is a good thing. We are so happy to have him home and thriving and October has been a great month.

Jacob had a pediatricia

n appointment this morning (his 6 month well visit even though it is about a month late). He had his 6 month vaccinations and a flu shot so he was not a happy camper! His weight was 12 lbs 4 oz which surprised me because I was sure he'd be bigger than that, but he is right on his growth curve and his doctor was thrilled. He is 22 3/4 inches and his head circumference was 16.5. He still has a huge head, but his body is growing into it now so he looks more proportioned and his face isn't as full now that his body is catching up. We discussed his RSV shot and unfortunately the insurance company has to approve the application and they are taking their sweet time with this. There is no way he'll be denied based on his extremely low birth weight and gestational age so hopefully we will have this taken care of by 11/5. The doctor said one of her patients has just been admitted to Children's in Boston with RSV so it concerns her that the season has started so early and she doesn't have a good feeling about this Winter in general. Let's hope Jacob can steer clear of this!

Jacob is finally starting to hold his head up and as soon as he can sit in his feeding chair the doctor has cleared us to start solids. We were going to wait until 6 months adjusted instead of the recommended 4, but Jacob is having some "irregularity" of his bowels and even after stopping his iron vitamins and switching to Fluoride vitamins it is not getting any better. We have been cleared to skip right over cereal and start prunes! I'm sure Jacob will love them. ;)

He continues meeting with Early Intervention once a month and we are currently working on his rolling. She is very happy with his progress and he remains on target for his adjusted age. He is a very happy baby and constantly smiling. Last time Carrie (our EI specialist) was here she told Jacob jokingly, "We need to work on your social skills!".

We took our first road trip this month out to Ohio and stopped in Pennsylvania on the way home. The foliage was beautiful and the scenery amazing as well. It really is a beautiful drive and we went during the best time of the year. The drive was a challenge with an infant, but we learned many valuable lessons that can be applied toward future road trips. All in all, we had a great time and we would like to thank everyone in PA for their hospitality during our stay. It was also great to visit with so many in Ohio. Our trip seemed way too short!

In conclusion, we have decided to start a Stewart Family Blog and close down the CaringBridge website. This website has been great, but the purpose of CaringBridge is to update friends and family during times of critical illness and since Jacob doesn't fall into that category anymore we are going to switch over to a Blog hosted by Google. It is not up and running yet, but I will post an update as soon as it is. If you wish to receive future updates on Jacob you can subscribe to his blog. You should stop receiving CaringBridge updates after my last post which should be sometime in the next few weeks. The great thing about this website is that we have the option of having Jacob's website printed into a hardcover book as a keepsake. All of my journal entries, pictures and all of your treasured comments in the Guestbook will be printed and bound. It will be a wonderful keepsake for Jacob (as well as Ian and myself) of his journey over the past 7 months.

Thank you so much for your continued support, prayers, emails, cards, etc. and be sure to check out Jacob's new pictures. I'm sure most of you have seen them by now. In the default picture, on the welcome page, Jacob is modeling his new Winter hat which was a steal at $0.94!!! Stay tuned for updates on our blog and hope everyone is enjoying Fall!

Starting Early Intervention

I can't believe that September is here and summer is over! In a few short months Fall will be ending as well. I am not looking forward to those Winter months since Jacob's time outdoors will be limited so we are trying to get out as much as possible while we still can.

Jacob has been growing like a weed. He is about 21 inches long and I would guess he is approaching 12 pounds. He has started laughing which is so much fun! If I stick my tongue out he copies me and sticks his tongue out and then he laughs. He gets a real kick out of it. He has also started reaching for his toys and playing with them. He has a toy that he can bat at and every time he hits one of the paddles it lights up and plays music. Some nights he could probably bat at it for hours if we let him. These are all things that are right on target for his adjusted age so we are really happy with his progress.

His first Early Intervention session is scheduled for October 6th and he also has his next pediatrician appointment on October 21st. At this appointment, we will start his Synagis shots for RSV and hopefully that will help protect his little lungs this Winter. We are also taking our first road trip with Jacob to Pennsylvania and Ohio on Columbus Day weekend so I will have lots to report on next month!

I have uploaded a few new pictures of Jacob. We took him apple picking this past weekend and he was very well behaved. He was zonked though after the long day as you can tell in one of the pictures.

That is all for September! More to come in October!

STTN and Smiling

I think I will start updating the website once a month now that Jacob is home and there is not too much to report. Like I said before, he should catch up by the age of 2 so I will keep this website up and running until he is cleared.

Jacob is now weighing 9 and a half pounds! Like the doctors told us it would, his body has now started catching up with his face! He still has chubby cheeks, but since he is starting to lift his head and gain some weight elsewhere his neck rolls aren't so bad. :) He is also sleeping through the night and smiling! He started both of these milestones right around 5 weeks adjusted which is right on target. He has found his hands and has been sucking on them a lot lately.

Jacob starts early intervention next Tuesday and we are excited about this as well. The earlier they start the quicker they catch up and the pediatrician is so amazed at how well Jacob is doing that she says he should have no problem catching up. It looks like the only major issue we will have to worry about is his eyesight which isn't bad for a 24 weeker!

I am posting a few new pictures that reflect the 9.5 pound Jacob. I am going to try and get his smile captured on camera soon and post that as well.

More to come in September!

Follow-Up at Tufts in Boston

Jacob had his appointments at Tufts on Monday and it was all good news! First, we had his eye appointment and man was that torture. It looked pretty bad and Jacob screamed bloody murder, but in the end they decided that his blood vessels have grown out as far as they can (to where they lasered) so he doesn't need to be followed anymore as far as the ROP is concerned. He needs to go back to a Pediatric Opthamologist in 8 months, but that is just so we can start following his vision.

Next was Endocrinology and the news was the same. He seems to be doing well as far as his Rickets is concerned and they want to see him back in 4 months to make sure all is well.

Last was Urology for his circumcision and to check on his undescended testicles. They have determined that his left testicle is almost all the way down and the right one is well on its way so they are not worried about that. They want to see him again in 6 months to make sure they are both completely descended. Jacob did surprisingly well with the circumcision and only yelped once and white knuckled Daddy's hand through the whole procedure. He was a tough, little guy. Mommy is a wimp and waited outside. ;)

He has been weighed multiple times since he left the hospital (at the Pediatrician's office, with VNA and at Tufts) and we are getting all different weights. It seems the most accurate is the VNA weight. Tufts tried telling us on Monday that Jacob is 9 pounds and there is no way he is 9 pounds! VNA was at the house today and they weighed him in at 8 lb 3oz and that is right on track for about an ounce a day which is what he is supposed to be doing so we'll take it!

Our friend Jeff Turner was at the house today taking professional newborn pictures of Jacob. Jacob was in a stellar mood, but we managed to get a few really good pics and I can't wait to see the end result. I will post a link to Jeff's website when all is done and for the folks (ahem, Gaga) who are looking for black and white blow-ups of Jacob's photo shoot they will be available to purchase online.

I guess that is all for now. More updates to come in the future (of course) and for now we are just loving life at home with the little boy!

Pediatrician Appointment

Quick updates from Jacob's first pediatrician visit today:

Head Circumference: 50th percentile

Weight: 50th Percentile

Length: 10th Percentile

To sum it all up....he is a little short. :)

He gained 5.5 ounces since Saturday when he was weighed by the VNA nurse. He is 7 lbs 15 oz! One more ounce from 8 lbs and 2 ounces from my own birth weight! Jacob's doctor was shocked that he came home on no monitors, oxygen or meds. She said she is very pleased with his progress and we have an appt on 8/6 for his 4 month check-up and vaccinations. He is 4 months tomorrow, but since we had the first pedi appt today and we have VNA on Thursday and Tufts on Monday, she figured we'd give him a few days to chill.

That's all for now.

HOME (sort of)

We're home.....sort of. We are staying at my Dad's temporarily (he is on vacation) while our house airs out. We recently had our hardwood floors refinished and we are letting the house air out before we take the little bean back to his "real" home. Either way it is nice to have the little guy home with us and we are adjusting to life at home with a baby.

The first night wasn't so bad. I only had to get up twice at night for a feed. He pretty much eats every four hours and when he goes to the pediatrician on Tuesday she will let me know if I can let him sleep through the night. For now, they are having me wake him up every four hours regardless, but he pretty much is on that schedule anyways. I have only had to wake him up once.

VNA came to the house today to check on him and weigh him and he is 7 lb 9.5 oz. He has already gained half an ounce since he came home so at least we are going in the right direction and that is on no extra calories! He is taking a multi-vitamin with iron with his dinner feed, but that is it!

We have been having fun trying out all his new toys (bouncer seat, swing, play yard, etc.) and he is having a blast. He loves riding in the car and usually sleeps the entire time which is good because he has a big appointment coming up on the 28th at Tufts. He has an eye exam with Opthamology, an appointment with Endocrinology for his Rickets and an appointment with Urology for a circumcision and a look at his undescended testicles (if they don't come down on their own he will need surgery since this could cause fertility issues later in life) so maybe that will be my next update.

I have added a few new pics of his first days at home so enjoy and I will update soon.

GOING HOME!!!

JACOB IS COMING HOME!!!!!!!!

God Willing, Jacob will be discharged from the hospital on Thursday! This is such exciting news and I can't wait to bring our baby home!

He is having his carseat test tonight and they are tying up some loose ends (last minute blood work, a renal ultrasound, scheduling follow-up appointments, etc.). I am doing my overnight tomorrow night and then the doctor wants me to stay home Wednesday to rest and gear up for his homecoming on Thursday.

He weighs 7 lb 8 oz today and is doing great with his feeds. His tube came out on Saturday night at 8 PM (he took it out himself!) and he has been feeding by mouth for almost 48 hours all on his own!

He will be home before my goal date of 7/23! It has been a long road and it is not over just because he is coming home. There will be many doctor's appointments and he will have to play catch up with his peers for the next two years, but hopefully in time it will all come together.

I also forgot to mention over the past couple of weeks that they no longer hear Jacob's heart murmur (his VSD) and they have decided that it has closed. They are not even going to do a follow-up echo because it was so small that the doctor thinks if we haven't heard it in that long that it has closed by itself (which it usually would have done by the time he was born anyway so that was right on schedule).

Hopefully, my next post will be an update on how he is doing now that he is home. I am going to keep this website up and running indefinitely so if you have been receiving updates you will continue to do so.

Thank you so much to all for the continued support and prayers. Our miracle baby is coming home!!!

In the home stretch...

Here's the news for today: Jacob weighs 7 lb 6 oz (porker!) and he still has about 6 chins.

He had his follow-up eye appointment on Wednesday and there was good news. He is in regression!! Basically, this means the blood vessels in his eyes have stopped going crazy and are growing normally out into Zone 3. He has his next appointment in 3 weeks (instead of the normal two) and the FABULOUS news regarding this is that most likely I WILL BE BRINGING HIM TO HIS NEXT APPOINTMENT BECAUSE HE WILL BE HOME!!! The day nurse at the hospital told me she has a goal: to get Jacob home by the 23rd. Funny thing is that was my own goal from day one. Home by 4 months and no later!!!!

Yesterday he had a bottle at 8 AM, nursed at 11 AM, 2 PM and 5 PM and had a bottle at 8 PM!!! He didn't have to be gavaged for 18 hours! This is huge and hopefully they will let me do the overnight soon!!

We are getting ready to wrap everything up and get him moving towards home. I am bringing in his carseat soon so they can do the carseat test. All babies born before 37 weeks have to sleep for one hour in their carseats to make sure they can breathe in the sitting position. We also are scheduling his circumcision so that will be taken care of before he comes home. That is pretty much all that is left besides packing him up and taking him home.

Hopefully in the next week I can let everyone know what day they are shooting for. Yay for more progress!!

Calculating adjusted age

Tomorrow Jacob is 0 (zero!). Jacob's due date was July 7th which means that tomorrow Jacob will no longer be considered a fetus. He is now considered a newborn baby and his milestones and developments will be measured from tomorrow and not from the day he was born.

From here on out you may hear me refer to Jacob's "actual age" and his "adjusted age". Jacob's actual age is calculated from the day he is born and is how old he technically is. All of Jacob's milestones (crawling, rolling over, walking, talking, etc) will be based on Jacob's adjusted age. For example, on Tuesday the 8th Jacob's actual age will be 15 weeks, but his adjusted age will be 1 day old. If the average baby takes their first steps at 11 months old and Jacob takes his first steps at 11 months old Jacob will be 11 months adjusted and 14.5 months actual.

Today Jacob weighed in at 7 pounds exactly!!!! He is still doing great nursing, but the doctors and nurses are still feeding him on their schedule which is frustrating. I would prefer to feed him on demand because when I show up at his designated feeding time and he is not interested in eating he just sleeps. Today they actually let me feed him when he was up (an hour before his normal feed) and he did great!! When he nurses he does awesome, but it is the difference between him wanting to eat and the doctors designating a time for him to eat. We are going to discuss this with the doctor tomorrow. Hopefully, they will see it my way because this is the only thing preventing him from coming home.

I guess that is all for today. I have posted a new picture of his fat, little face with no oxygen!! You wouldn't believe it is the same baby that weighed 1 and a half pounds at birth! He changes so much day to day. There isn't much to update everyone on now that he is doing so well. He is just gaining weight and eating and soon enough he will be home where he belongs.

Hope everyone had a great holiday weekend and enjoyed their time off (if you had time off!).

Completely weaned off oxygen!!

Just a quick update for today! Jacob weighed 6 lbs 9.3 oz last night and he has been weaned off the oxygen since Friday night at 8 PM!! If you remember from my last post on Friday morning they tried him off it for a couple of hours and he needed to go back on. They tried again Friday night at 8 PM and he hasn't looked back! His oxygen saturation levels have remained between 95-100% for the most part which is right where he should be. He has been spell free since he went off Friday night and if you recall one of the 3 criteria for him to come home was that he has to be spell free for 7 days.

We are working on the last step to getting him home which is bottlefeeding/nursing for all 8 daily feedings. As soon as he does this I will spend 24 hrs at the hospital with him and they will weigh him after his nursing sessions to make sure he is getting enough to gain weight and then he can come home! Hopefully, we only have a couple/few more weeks!

Happy to be in Plymouth

Well, Jacob's move went well and we are happy to be in Plymouth. The nurses have been great and have really taken a liking to Jacob.

Jordan has been much easier than Boston! There is free parking, a 10 minute commute, less money spent on gas, etc. It is not as private as Tufts seeing as the nursery is about the size of a large storage closet (with 5 babies and their parents/visitors). They have to set up screens for nursing sessions and there are no curtains to section off your section of the room, but so far that has been our only disappointment. Luckily, we were able to secure the back corner of the room so we have to walk by everyone else, but nobody really makes it back as far as we are which helps.

As of Wednesday night, Jacob was 6 lbs 4 oz and he is still growing. He has done so much better with his nursing that they are no longer giving him the gavage feedings when I nurse him. This is experimental and as long as Jacob continues to gain weight we can start working on getting him to bottles/nursing exclusively so they can take his gavage tube out.

Today they tried him without his nasal cannula and he did good for a couple of hours, but once again after his feeding he started having some trouble so they had to put the prongs back in his nose, but for the first hour and 45 minutes before his nursing session he didn't set off the machines at all!

Just as an FYI, the nursery has informed me that people have been calling the nursery looking for me. Unfortunately, Jacob is in the continuing care nursery, not in his own room and I am unable to accept personal phone calls on the phone in the nursery. They haven't been taking messages so if you have been trying to reach me, please use my cell phone.

Hopefully, we will continue working on Jacob's feedings and weaning him off his oxygen and get him closer to coming home!

Jordan Hospital!!

Today is a big day for little Jacob! First of all, he is 3 months old today! Gestationally, he is 38 weeks and would have only had another two weeks to go until his due date!

This morning he had another eye exam and the news was fabulous! His eyes look great and are finally starting to spread out into Zone 3!! From now on he will only need to be checked every two weeks so his next eye exam will be Monday July 7th, his due date!!!

Now for the really good news. Jacob is on his way via ambulance to Jordan Hospital in Plymouth as we speak!!!! FINALLY! His eyes looked great and they had a bed this morning so he will be 10 minutes from us instead of an hour! This will make it much easier on us (stress wise and financially) and will help me get him nursing exclusively.

The nurses in Boston are sad to see him go (he made quite a few friends during his 3 month stay) and we will miss them, but we all know that this is the next step to Jacob coming home so we are all happy we have finally made it this far.

Once Jacob settles into his new digs I will update everyone on his move.

Jeff Turner Photography

Just wanted to let everyone know that I have posted two new pictures in the Photos section. He was actually awake for one of them!

A few weeks back, our good friend Jeff Turner helped us out by giving me a ride into the hospital and spending a few hours with me and Jacob. Jeff is an extremely talented photographer and he brought his camera along for Jacob's first photo shoot.

When Jacob hears other babies in the NICU cry he pouts and his lip starts to quiver like he is going to start, but he never actually does. Ian and I have had a hard time catching this on camera, but of course Jacob did it just long enough for Jeff to catch it on film.

The link and password are below. Feel free to take a look:

http://www.jeffturner.printroom.com/ViewGalleryPhoto.asp?evgroupid=31&userid=u2busaru&gallery_id=1103214&image_id=26

Password: jacob0323

Slow progress

Our little one is growing by leaps and bounds!! As of last night he was 5 lbs 9 oz and growing like a weed.

He had his follow-up eye exam on Monday and everything looked good so we are back to weekly check-ups. He is still in Zone 2 so we are hoping for Zone 3 this week. Once he gets there we won't have to worry about his eyes anymore.

He is doing so well with his nursing! He is still having a few spells while eating so hopefully he outgrows that soon, but as of last night he was weaned down to 150 cc's of oxygen so he is almost down to nothing again. Hopefully by the time he hits 6 and a half pounds he will be off the oxygen.

He is squeezing into his preemie clothes and in no time they will be too small, so there is hope for the 0-3 month summer clothes we bought him! His due date is only 2 and a half weeks away so we are closer every day to him coming home! We have just about finished his room. The carpet was installed this week, the walls and ceiling have been painted and the crib and changing table are assembled and all set up. Our house actually looks like a baby belongs there! I don't know how we got it all done in between trips to the hospital and our normal daily activities, but it is finally all coming together.

I have pictures that I will post later this week. I forgot to bring my camera dock with me today so I have no way to upload the pictures. Wait until you see his cute, little, fat face! He has double chins! You'd never guess this was a one and a half pound baby!

Out of surgery

Just wanted to update everyone and let you know that Jacob came out of surgery around 7:30 PM (they got a late start) and he did great! The opthalmologist called us personally to say Jacob did great and he is now recovering nicely. His eyes might be red and puffy for a few days, but other than that there were no issues. He may eventually end up needing laser treatment again, but he may not so we will wait and see.

Since I am updating you I can let you know that Jacob was up to 5 lb 2 oz as of last night. The are weighing him now so he is probably even slightly higher than that tonight!

I am recovering as well. My mouth is still numb so I am not really feeling much pain, but it hasn't been as bad as I expected it would be. I think the anxiety of the surgery was worse than the actual surgery. Hopefully, I can eat regular food again in a few days. Half gallons of chocolate ice cream lose their appeal after a few hours. :)

Hope everyone has a great weekend!

Rickets and Laser Surgery

Well folks....it's all bad news tonight unfortuately.

Jacob had his follow-up eye exam this morning and his eyes have gotten bad enough that they have decided to treat them. He will be having laser eye surgery tomorrow afternoon at 4:30 PM so please keep him in your prayers. Luckily, there are three different zones of the eye and his blood vessels grew out to Zone 2 before there were any issues. This means the laser treatment will not affect his direct line of vision. If it does affect anything it will only be his peripheral vision and this is not a definite. Over the next couple of years, we will have to see a Pediatric Opthamologist to see if his eyes were affected by the treatment and if he needs glasses.

The next piece of bad news is that Jacob has Rickets. Approximately 50% of very low birthweight infants develop osteopenia of prematurity (decreased bone density) with Rickets (demineralized bones with a predominance of uncalcified bone matrix) which may lead to fractures. The good news is that this is treatable by giving him Calcium and Vitamin D. Not terrible news, but certainly not good news. Our little boy will be as frail as an old lady with osteoporosis. No climbing trees for little Jacob!!!

I actually do have some good news to share. Jacob hit 5 pounds last night! He weighs 5 pounds exactly!!

Unfortuantely, that is all the good news I have. I will be suffering along with Jacob tomorrow because I am having all four of my wisdom teeth extracted (FUN!) so I will probably be laid up on the couch for a few days popping some pain killers. If you don't hear from me before the weekend is over, I hope all the guys have a great Father's Day!! Goodnight!

ROP

Well, Jacob has had a rough weekend and today has not been much better. Jacob is suffering from reflux which is common in preemies born as early as he was. This can be treated with medication, but they are currently in the documenting stage where they track his spells and feedings and once they see enough proof that it is, in fact, reflux they will start medicating him for this. I guess they overmedicated preemies back in the day for this and there was a research study done that showed half the kids on the medication didn't really need it so they are hesitant these days to medicate them hence the documenting period. I have witnessed his spells/feedings first hand and recognize the signs and know that eventually he will be put on the medicine. I will be happy when this happens because our poor little boy has not been a happy camper. He has been having trouble nursing (probably due to the soreness in his esophagus) and spitting up a lot after his feedings. These are common signs of reflux.

Now for the bad news, Jacob will not be going to Jordan...at least not this week. He had his follow-up eye exam this morning and although his right eye has shown improvement, his left eye is concerning and has now advanced to stage 3. Most likely this will require laser eye surgery. This is nothing major, just one more thing for Mom to stress about. They are going to take a look again on Thursday and then they will decide whether or not to move forward with the surgery.

In addition to all of this fabulous news, he has been spelling quite a bit lately (heartrate drops and oxygen de-saturation) and as a result they have bumped his oxygen from 75 cc's back up to 500 cc's just to give him a break while everything gets sorted out.

Most of this is expected and "normal course" for a preemie like Jacob and he will once again with God's guidance overcome these obstacles and come home and we are obviously in no rush. He will come home when it is time and considering everything that could have gone wrong we thank God every day for his continual guidance and care. Jacob truly is an example of how powerful prayer can be.

Thank you for all the comments and well wishes. Ian and I enjoy reading them and look forward to them each time we post. Hope everyone stays cool! It is hot out there!

Almost transfer time

Wow!! Where do I begin?! There is so much to update everyone on. First of all, Jacob weighs 4 lbs 10 oz tonight!!! He is now 35 weeks and this is the point in my pregnancy where he should have been averaging half a pound a week in weight gain. Since he is still technically a fetus (only growing on the outside) he should be doing this and he seems to be right on track since he has gained 9 ozs in 5 days! Since he is growing so quickly and catching up, they have cut back on the rocket fuel they were giving him and cut his "extra" calories from 28 to 26.

Since Jacob is now 35 weeks they have stopped giving him the caffeine he needed to stay alert and avoid his apnea episodes. They usually outgrow this condition by 36-37 weeks so in the next couple of weeks he should be big enough so that this doesn't happen anymore and in the meantime they are discontinuing his daily cup of java.

As for his oxygen, they have weaned him from 1 liter to 75 cc's! This is huge. Earlier this week he had been weaned from 1 liter, to 900 cc's, to 800 cc's and when I looked today he was down to 75 cc's! Only 75 cc's to go and he will be weaned off the oxygen!

GOOD NEWS!! Jacob IS moving to Jordan after all. His ROP has taken a step back (back to Stage 1 from Stage 2) and if all looks good at his eye exam Monday he will be monitored every other week and we have decided to move him to Jordan. There are many reasons we decided to make the move:

1. Parking! It is free at Jordan and will save us at least $7 a day.

2. Nursing. I am 10 minutes from Jordan and can be at the hospital for all of his daily feedings.

3. TRAFFIC!! They are paving the SE Expressway and on the way home it usually takes us an hour and 15 minutes to get home.

4. Food - We have been eating out a lot lately.

5. Stress! It will just be easier on us (especially Ian who is working long days and then spending all his free time at the hospital).

There is a wait list at Jordan, but Jacob is number one and if his eye exam goes well on Monday he could go at anytime as long as a bed is available.

I guess that is all for tonight, but that is plenty. I will keep everyone up to date on his move and weight gain. The doctor said if he keeps doing what he is doing he could be home in a few weeks!!!!!

Four pounds, an open crib and tubby time!

Today is a great day!! Jacob weighed 4 lbs 1 oz last night! He has finally passed the four pound mark and this means that he can move to an open crib! No more isolette for Jacob!

He is also getting his first bath today!! He is finally big enough to regulate his own body temperature so he can move to the open bed AND get his first bath. Just in time too because he is getting rather stinky. ;)

The only semi-disappointing news is that we are not sure if Jacob will move to Jordan. He is receiving eye exams every Monday to monitor the progression of his ROP and if he moves to Jordan he will have to be transported every Monday back to Tufts for his eye exam and then transported back to Jordan. At this point, Ian and I believe it is best to just leave him here and save him the commute into Boston every week.

I started nursing Jacob again today. I have had mastitis since the middle of last week and it was like the worst flu you've ever had times ten. I will be more than happy to never have to go through that again. I was having to express my milk and dump it and I was not able to come to the hospital for a few days so I am happy to be back and nursing again. Jacob picked up right where we left off and is doing great with it. They had actually tried to bottle feed him while I was gone and he doesn't seem to do as well with a bottle as he does with nursing.

I will definitely post new pictures later tonight so everyone can see his first bath and how big he is getting. More to come!

One step closer to home

Well, it has been awhile since my last entry, but there is not too much to update everyone on. He did have a minor setback last week with some more fluid so his weight has been bouncing around. He was 3 lbs 14 ozs and I was so sure that he would hit 4 pounds over the weekend, but they ended up giving him lasix Thursday and he lost 5 ounces!!!! He dropped all the way to 3lbs 9 ozs and then climbed to 3.13 and dropped to 3.11 and is now 3.12. Hopefully, he will get this under control and start gaining steadily again.

They tested his eyes again (every Monday) and he has jumped now to Stage 2/Zone 2 for ROP (Retinopathy of Prematurity) so they are monitoring this more closely. Stages 3, 4 and 5 are serious and often require surgery. Some babies can hit Stage 2 and then level off and never need the surgery so we are hopeful, but if not this is a very minor side effect of being so immature.

They are starting to wean Jacob off his oxygen and because of all the fluid he has had they have put him on chronic diuretics. This will hopefully help him wean off the oxygen and still help him get rid of all the excess fluid! We received our "congratulations on graduating the NICU" package last week which means they are getting him ready to be transferred to Plymouth! This is great news and one more step towards home!

I will post some new pictures soon. He changes so much and so often that I doubt most of you will even believe it is him when you see the new pics!

Attempting to nurse

Last night we hit another milestone, breastfeeding!!! Jacob passed out after about 30-40 minutes, but he would take 5-6 long sucks and then rest for 5 minutes or so.

We tried again for one of his feedings today and this time he made it almost an entire hour and he was sucking most of the time. He took some short pauses in between, but did a lot better than he did last night. The nurses are impressed with how well he is doing with it.

He is now 3 lbs 13 ozs and should hit 4 pounds by the end of this weekend! Stay tuned for that announcement!

That is all for today!

Baby Shower

Well, Jacob is now back on nasal cannula! He sounds like he has a bit of a cold which I hope he fights off because a common cold can be very serious for babies as small as he is. I'm sure he will do anything in his power to fight it off because he certainly hates the nurses coming near him with that nasal aspirator!

He is 12 grams away from 3 lbs 9 oz so he is just 3 and a half pounds today and growing leaps and bounds every day!

Yesterday was my baby shower (I should have been 33 weeks pregnant!) and it turned out to be a beautiful day! Jacob is very loved and so many people turned out and showed up with very generous gifts for which we are extremely grateful. He has everything he will need and then some! I want to publically thank my Aunt Pam (Jacob's GREAT Aunt....I'm sure she hates hearing that!!) and my BFF Kelly for hosting my shower. I can tell a lot of hard work went into it and I appreciate everything they did!

Hopefully, Jacob is on nasal cannula for good now! I will have more updates later this week! Hopefully we will be posting a 4 pound update soon!

Collapsed air sacs

Well, it turns out Jacob did not have an infection after all! His poor little air sacs in his lungs collapsed again. :(

It all makes sense to us now because he sounded almost like he was wheezing when we were there Sunday and that would be why. They pulled him off nasal cannula around 7 PM on Sunday night and he was instantly better. The nurses were pretty impressed that he made it a whole week without having to go back on CPAP so we will just call that his warm up. They are hoping that in a week or so they can try weaning him off again (hopefully for good!).

In the meantime, they have stopped his antibiotics since he doesn't have an infection and they are still feeding him with no problems. He was up to 3 lb 2 oz as of last night! Until next time....

Back on CPAP....

Jacob had a pretty rough day today. They think he has an infection and because of this he was having more spells than usual. He made it until 7 o'clock tonight (5 hours away from being off CPAP for one week) and had to go back on CPAP. The infection is draining him of all the energy he has and making it harder for him to breathe on his own. They started him on a round of antibiotics late this afternoon so hopefully once the meds kick in and maybe a week back on CPAP he'll catch up with where he was. They have decided to continue with his feeds unless he gets any worse so hopefully this will not effect his growth.

Other than that there isn't much news to report, but we will keep you updated on Jacob's condition. Hopefully, he can kick this thing and be back on track shortly.

THREE POUNDS!!!!!!

Drumroll please......

Jacob weighed 3 lbs 1 oz as of last night! He has finally hit our next goal of 3 pounds!!! There is, of course, some not so good news to go along with this. He has fluid in his lungs again . They did a chest x-ray this morning and he looked "a little puffy" so they gave him more lasix this morning to help him try and pee out the excess. We are still pretty happy because he has been gaining an ounce a day for the past 4 or 5 days which is what he should be doing, so last night he should have been 2 lb 15 oz so he would have been right on track to hit 3 lbs tonight either way. I am also sad to report that his weight gain has all gone to is face so my little Mr. Magoo is no more. He now has a perfectly round, chubby, little baby face. Check out the three new pictures for proof!

Jacob also had a procedure yesterday to examine his kidneys which have looked a little swollen. They were concerned he might have reflux of his kidneys. This is when urine backs up from the valves back into the kidneys which can then cause them to look swollen on the ultrasound. If this was the case he would require surgery to repair the valves. If he did not have reflux they said they will just monitor him and have him come in for a follow-up in about 6 months. Fortuately, he does NOT have reflux .

Jacob is my hero! He is working so hard to beat all the odds and I am so proud. He has a long road ahead of him, but with God's help I think he'll do just fine.

Thank you again for all the cards, comments, e-mails, etc. Ian and I appreciate every single one of them! Stay tuned for another update later this week.

Our next goal: Moving to Jordan Hospital in Plymouth!!

Another renal ultrasound

As of last night, Jacob weighed 2 lb 13 oz!! He has been gaining an ounce a day the past few days which is exactly what he should be doing so all is well in that department!

He is having another ultrasound of his kidneys done tomorrow. They are still seeing a few issues with his right kidney and want to look into that some more so we should have more info on that by Friday.

That is all for today! More to come soon!

Nasal Cannula!!

Today we walked into the NICU and went right to Jacob's isolette to check in on him as we do every day. As we are standing there staring at him his nurse Linda walks in and goes, "Surprise!". Instinctively, we start looking around trying to figure out what the surprise is. He is off CPAP and on nasal cannula!!! We were staring right at him and didn't even notice!!! Last night around midnight they noticed his nose was breaking down a little bit from the CPAP and decided to give him a break for a few minutes and put him on nasal cannula and he did so well with it they just left it in!

He also had his blood work done today and his thyroid and his electrolytes came back normal, but his liver enzymes were a little off so they have to keep an eye on that, but other than that he looks good.

He also had an eye exam today and as expected he doesn't have ROP, but it is still too early to tell so as they told us a few days ago the consensus is that his eyes are still "immature".

They have finally leveled out his electrolytes and we are hoping to see his weight gain start picking up. He is 2 lb 11 oz as of last night so hopefully he will continue gaining at an appropriate rate.

That is all the news for today, but it is great news! More to come later this week.

Mr. Magoo

Jacob had his renal ultrasound today (technically yesterday at this point!) and the results came back great! They said everything appears normal and is functioning properly so that is good news. They chalked his high direct hyperbilirubin levels up to starting his feeds late and have decided to give him the meds just in case. Since they were there and had an ultrasound machine they decided to look for his gallbladder (don't ask me why!) and he has one so YAY! They seemed pretty happy about that so I don't know if some babies born this early are missing their gallbladders or what, but if they are happy, I am happy. They did take a look at his kidneys as well and said one is showing signs of immaturity, but that is not a surprise. He is still technically a 30 week "fetus" he is just now cooking in his "womb with a view" as the nurses like to call it. He will obviously grow a lot slower this way. :)

In other news, he is having his eyes tested on Monday. This is the first of what will probably be many exams so stay tuned for updates regarding this. During these exams they are looking to make sure his blood vessels are growing properly. She said the first exam will probably once again only show "immaturity" which tells us nothing, but they will continue testing his eyes until he leaves.

Check out the new pic of Jacob and the pic of his twin (the two pics are side by side). I think there is a striking resemblance between the two. I have started to call him my little Mr Magoo. ;)

More to come. Very tired....must go to sleep. Goodnight!

Renal Ultrasound

Today the NP came in to let us know they are going to give Jacob a renal ultrasound. His bloodwork from this week and last week showed increased levels of Direct Bilirubin which is different from the bilirubin Jacob had when he was born that caused his jaundice. Direct Bilirubin is caused by the TPN that was administered through his IV (the fluids he received until he was ready to digest breastmilk). TPN, over time, can damage the liver. Roughly a third of newborns on TPN for more than a few weeks develop some liver complications, but the good news is that damage from TPN is almost always reversible. Once Jacob came off the TPN, his liver slowly started to recover, moving the bilirubin better into the intestines, from which it is excreted. The doctors may prescribe a medication to speed the process along which is why they are doing the ultrasound first. Once they are certain that this is what they are dealing with they will probably get started on the meds. Fortunately, the NP informed us that his levels have not increased from last week to this week so that is a good sign.

They are also concerned about his weight gain. The average weight gain now should be between 20-30 grams a day. The hospital looks at this weight gain over a week (from Monday to Monday) and his gain last week was 54 grams total. He is moving up (or on some days staying the same) so at least he is not losing weight, but they would like him to pack on the pounds a bit quicker than he has been. They have added more calories to his breastmilk to achieve this, so hopefully that will do the trick. He is still 2 lbs 9 oz, but 2 lbs and 9 oz is anywhere from 1,162 grams to 1,191 grams so as you can see he can still gain weight, but stay the same as far as lbs and oz goes.

I was able to hold Jacob today cradle style (check out the pic) and that was nice because I was able to look at him while I was holding him. Unfortunately, the nurse swaddled him with his arms outside the blanket so Ian and I had to fight him off of that CPAP mask which he was trying to yank off with all his strength.

That is all for today! Hopefully I will have the results of his renal ultrasound tomorrow and can post an update!

Little bugger

Jacob is continuing to do well and is now up to 2 lb 9 oz! He is still on his full feeds and doing well with the CPAP.

Unfortunately, the little bugger has dicovered that the annoying feeling he has in his throat is his feeding tube. He has now learned how to yank it out and the nurse reinserted it 4 times the other night until they gave up and put it back in his nose. She said in some ways it is good because he is starting to become more aware of what is going on around him and he is learning that when he pulls the tube out that feeling disappears.

He is well on his way to 3 pounds and hopefully in a few days he will get there! More to come in a couple of days!

My preemie the celebrity...

I don't have too much to report this weekend. Jacob is weighing in at 2 lb 7 oz and has now maxed out on the calories they have been adding to his breastmilk (fortifier). At this point, they will start adding protein to boost it some more. The NP warned us that the protein makes the babies gassy and he may start to stink!

They tried weaning Jacob off the CPAP end of last week and he wasn't having it. His baseline is currently 6 cm of pressure and they tried weaning him down to 5 cm. Once he does good on 5 cm it is on to nasal cannula. Well, he basically told them to take a hike and went back up to 6 cm. The nurse said expect him to stay there for another 2 weeks before they try again because they don't want to push him.

Jacob is famous! Well....his foot is famous. Check out the link below to Boston.com. They did an article on extreme preemies in Boston Globe Magazine and Jacob was their subject. They wanted to interview me for the magazine, but they expected me to get up at 6 AM to be at the hospital by 9 AM! No thanks....especially when I have to stay there until 7:30 PM! They also videotaped Jacob last week for a public service announcement for Tufts Medical Center and the Floating Hospital for Children. Unfortunately, you will only see this if you live in Lowell.

That's all for now! Hopefully I will have more mid-week.

http://www.boston.com/bostonglobe/magazine/articles/2008/04/27/extreme_preemies/

No more PICC line!!

Jacob has had his PICC line removed and is no longer receiving IV fluids! He is on full feeds (19 cc's of breastmilk boosted with human fortifier 8x a day) and they are starting to wean him off the CPAP. He has been decreased from 6 cm of pressure to 5 cm!

He is still around 2 lb 6 oz give or take a few grams in either direction, but should start heading towards 3 pounds shortly with the feeds he is getting.

More news to come this weekend!No

Removing the PICC line

Wow! What a day!

Jacob is up to 2 lb 6 oz as of last night. He is on full feeds which they are boosting with human fortifier to give him some extra calories and nutrients. The IV has been stopped and his PICC line is still in, but will be taken out tomorrow morning if all goes well tonight.

The Chief of Newborn Medicine came in to talk to me today and said they are working on getting him on the nasal cannula in the next FEW DAYS. For those of you who don't know, the nasal cannula is just the two prongs in the nose which supply oxygen. At the rate he is going, he could be transferred in no time which would be great for Ian and me. Jordan Hospital is 10 minutes away and parking is free so it would be a huge help to have him close to home and not draining our bank account!

That is all for today! As Kip would say....peace out.

Still on CPAP!!

72 hours and counting! Jacob is still on CPAP and amazingly when we arrived today he was only on 25% oxygen! He will be at room oxygen once he gets down to 21% which means the machine is only applying continuous pressure to keep his air sacs slightly inflated. He is doing the rest of the work all by himself!

The Nurse Practitioner came in today and told us he is doing fabulous and if he hasn't had any problems with CPAP yet he probably won't! She said they will have him up to full feeds (14cc's, 8 times a day) by tomorrow morning (he is currently on 11cc's at the moment) and as soon as he gets there they will take out his PICC line and stop his IV! As of last night, he is up to 2 lb 5oz and he gained 14 grams and 20 grams the past two days which are great (normal) weight gains. It looks like it might not take much longer to reach our goal of 3 pounds! Stay tuned!

New Pics

Check out Jacob's new photo shoot!

He has been on CPAP for over two full days and he is doing awesome! His feeds are increasing and he gained 14 grams yesterday which they said is a more normal weight gain. He also is now on a pacifier and loves it (see pic).

That's all for today!

Jacob's first go at CPAP

I have been holding off on posting until Jacob was all sorted out from his rough weekend and he is just starting to pick up again now. It took him longer than I expected to recover from his collapse on Saturday.

Jacob did hit 2 pounds on Monday night, but because of the rough weekend he had his feeds were stopped on Saturday night so he has had no breastmilk since then. I was a little nervous that he had hit 2 pounds without feeds since it obviously is all fluid that is causing the weight gain. I was more alarmed when he hit 2 lb 5 oz the next day and 2 lbs 9 oz the day after that!!! The nurses have assured me that since he is still peeing non-stop that they are not that alarmed and he will lose the fluid. Even so, 10 oz in a matter of 4 days is alarming so I have been a little on edge, but I called this morning and he is down between 2 lb 3 oz and 2 lb 4 oz so it looks like they were right.

The good, scratch that, FABULOUS news is that Jacob has been off his ventilator and on the CPAP now for 17 hours and so far so good!! This is huge! The longer that ventilator is in there the worse off he is as far as his lungs and breathing problems go. When he went on it last night at 5 PM the nurse warned us that when we called this morning he might be back on the ventilator so not to be alarmed. She said when they are this small they usually can handle it for about 12 hours the first time until they say, "ok I've had enough" and need to go back on the vent. It has been 17 though and Mr. Tough Pants is stubbornly refusing to budge. This kid amazes me! The nurses have been saying how good he is doing considering how small he is and the fact that he has pulled his breathing tube out multiple times now is a testament to his strength. They said babies this little and premature should not have the ability to lift their heads, but you should see this kid pull his head up and yank as hard as he can to dislodge that thing which is another reason I am glad it is out! We will keep our fingers crossed, but it may be that in a few hours he might need the vent again and we may go back and forth for days or even weeks, but the fact that it has been out this long is definitely going to help his lungs in the long run.

Ian and I are heading up later this afternoon. I was a little nervous to be there when he came off the vent and went on CPAP because every time they do something like this to him and he has a hard time I panic and end up crying the whole day so I figured this time I would stay away until it was all over.

They are restarting his feeds today so hopefully in no time Jacob will be 3 pounds! That is my next goal!

Rough Weekend

Well.....there is so much going on, but nothing is concrete so I was hesitant to update the journal at all, but they have kicked me out of his room for awhile so they can address a few things so I figured why not?

I was hoping Jacob would hit two pounds over the weekend, but that did not happen. He has had fluid in his lungs and they have been giving him lasix to help him pee it out so he was up and down continuously this weekend between 1 lb 14 oz and 1 lb 15 oz. As of this afternoon, he is between 1 lb 15 oz and 2 lb's. Unfortunately, he had some more fluid in his lungs on the last chest x-ray and his gain last night was approximately 46 grams which tends to be a bad sign (weight gain that fast usually indicates more fluid in his lungs). They said he is peeing like a champ today and making them all proud so hopefully he can get rid of that extra fluid again.

He had a really rough day on Saturday which was not how I intended to celebrate my big 2-7. If anything, I was hoping for a birthday gift of two pounds, but once again Jacob had plans of his own and decided to give me a heart attack. When we arrived Saturday the nurse came out to meet us and explain what had happened. Jacob had pulled his ventilator out.....AGAIN! This has happened twice before and he was breathing fine on his own for awhile while they reinserted it, but this last time since they were already talking about weaning him off the vent they decided to see what happened if it stayed out. Well, his air sacs in his lungs collapsed (this is obviously not good) so he had to have the vent put back in and it took him most of the day to recover from the collapse.

They also discovered that his electrolytes were out of whack so they upped his IV and backed him off his feedings a little bit to make up for the increase in IV fluids. He was up to 12 cc's of breastmilk 8 times a day, but they had backed him down to 9 cc's as of last night.

When I arrived today, the NP took me aside to explain what they are doing to him right now. They are using this machine that lights up his blood vessels and they are going to try and insert an arterial line in him that will help them more accurately track his blood pressure. They have been having problems with this and even after receiving blood transfusions multiple times over the past couple of days it is not improving. They are hoping if they can get this line in it will help them get a better read. They said since he is bigger now this may not work and is normally reserved for smaller babies so it is a toss up, but they are going to try anyway and hopefully I can go back in later this afternoon. The only good news I got today was that they have lowered his vent settings to prepare him for the CPAP and so far is he is doing really good on the lower settings. Let's hope he keeps this up!

As I said, nothing really concrete to report. Everything that I explained above has pretty much been happening since Friday night so hopefully he can straighten out, get back on feeds and hit 2 pounds this week!

So close!

Jacob is back up to 1 lb15 oz! Hopefully, he will hit 2 pounds this weekend!

As of tonight, his feedings are up to 10 cc's!!! He should be off the IV fluids in no time.

He also had ANOTHER chest x-ray today and they said his lungs appear to be better than yesterday so the lasix they gave him to help him pee the fluid out are working!

I am tired....must get sleep. That is all the news for tonight. Ian and I are spending tomorrow night with the little bean so my next update may not be until Sunday, unless of course he hits two pounds then I will make my way to the hospital computer as fast as possible to post milestone numero uno! Good night!

Fluid in the lungs

It's been a few days since my last update and we have a few different things going on.

First of all, as of Wednesday night Jacob was up to 1 lb 15oz! I was so excited because he was one ounce away from 2 pounds!! The bad news is that he gained 90 grams to get to 1lb 15 oz and the nurses said a gain that fast is worrisome. Most likely it was fluid in his lungs again so they ordered another chest x-ray.

Last night, he had dropped down an ounce to 1 lb 14 oz and the nurses were pleased with this. They said this is a good thing after the 90 grams he gained on Wednesday. The chest x-ray was also done yesterday and they said he still looked a little "puffy" or hazy, but not too much had changed since he had the last chest x-ray. They said with the tube down his throat into his lungs he is bound to get some fluid in there and it doesn't appear that he has more than he did last time.

Yesterday, his feedings were up to 6 cc's, 7 times a day and hopefully they were increased again today. I will find out when I get there in about an hour. Once he hits between 10-14 cc's of breastmilk they can take him off the IV fluids!

They tried weaning him off his ventilator yesterday and trying him on a different vent (which is the in between for CPAP) and he wasn't toleratng it too well. I knew it was too soon for this. He is still so small and is still being assisted with his breathing by the machine. Hopefully, in another week or two he will be strong and big enough to try this out.

That is all for now. Hopefully, my next post will be that Jacob has hit 2 pounds!

Good news!

Once again I am happy to report good news!

I was a little nervous today waiting for the results of Jacob's EKG. Just to give you all a background, they had heard his murmur again (louder than before) and were concerned that his PDA was still open or had reopened. He did have the meds to close this, but often times the PDA will open up again and they can only treat the PDA twice with meds before they go to the surgical option. Because of Jacob's size and the side effects of the meds, the second dose was not an option for him so if it was open again we would be going right to surgery and he is so small that this was making me very nervous (and cry constantly!).

The good news is that the EKG showed that his PDA is closed! It appears the meds have worked for now. We will pray that God guides Jacob through this and the PDA remains closed permanently!

Other news from the EKG, they do see a VSD, but it is very small and again they are still not concerned about it and it should close within the first year of life so moving on....

Now that they have confirmed that the PDA is closed they have increased his feedings to 3 cc's of breastmilk 7 times a day! The goal is to get him solely on breastmilk and off the IV fluids (vitamins and lipids). This will help him grow faster. As of Sunday night, he was up to 1 lb 12 oz, but last night he dropped back down to 1 lb 11 oz which is expected (the fluctuations I have discussed before).

He was also receiving another round of blood transfusions today which was to be expected with all the blood that they have been taking out of him for his labs. The nurse also told us that when babies of Jacob's size are anemic (which he is, just like his Mom and his late Grandma!) that murmurs can actually sound louder when their blood volume goes down and after the first transfusion this morning, the murmur was not as loud as it had been earlier today so that might be what they were hearing.

That is all for now! Hopefully my next update will have news of another weight gain. I think after this trial is over and Jacob comes home I may be able to write a book on Preemies! I am learning so much!

More weight gain!

Not too much news to report today other than weight gain, but weight gain is such good news I had to post! As of last night he was 1 lb 11 oz!!!! He probably will still fluctuate up and down, but this is a step in the right direction. Ian and I are very happy with his progress!

I was able to hold him for a couple of hours last night and he didn't sleep a wink the whole time. He was very interested in what was going on around him. Personally, I think it is the bright lights of the NICU that distract him.

One of our favorite nurses, Pat, was on last night and she said Jacob is very spunky. She said every time she changes his diaper or picks him up to weigh him, etc. he scowls at her. Apparently, he doesn't like to be bothered. This was apparent when I tried to change his diaper and he peed on me! I am now officially a mother! My parents use to tell me that when I came out I was scowling too so maybe he is just like his mother (news my father will be ecstatic about!!). She said he will probably give us a run for our money when he hits the age of 2!

As the doctor said, we are trying not to let our highs get too high or our lows get too low, but it is so hard when he is doing this good!

Gaining Weight!

Not too much news to report today, but no news is good news!!

The last dose of meds for the PDA was administered last night and as of this morning all of Jacob's vital signs are indicative of the PDA closing. The only not-so-good news is that they still hear a murmur. They believe this may be a VSD (Ventricular Septal Defect), a small hole in the heart which usually closes by the baby's first birthday. If this doesn't close this may require open heart surgery. This has nothing to do with the fact that Jacob was a preemie and we were actually aware of the possible existence of this around 20 weeks at my big ultrasound. We had a fetal echo when I was here at Tufts the week before Jacob was born and the Cardiologist said he no longer saw it. It looks like that was not the case and it is still, in fact, there but it is small enough that the doctor is not concerned and has hope it will close all by itself. There are no meds to treat this condition and if it doesn't close by itself surgery is the only remedy, but as stated previously this does not presently concern the doctor so we are not too worried about it.

Jacob has finally surpassed his birth weight and was weighing in at 1 lb 8 oz today! They said the weight gain could be a result of his calories or the fluid he had in his lungs earlier this week, but they did a chest x-ray again and his lungs were not as hazy as they were the other day and his weight has been 1 lb 8 oz for the past two days so hopefully the weight gain is due to calories! My short-term goal is to see him reach 907 grams or 2 pounds! That will be an exciting day!

They removed the umbilical line they were using to feed Jacob and replaced it with a PICC line (also known as a central IV line) that goes to a blood vessel right next to his heart so this is good news! The IV is less invasive than the umbilical line and there is less chance of an infection so we are hopeful that little Jacob can start his feedings again tonight and start that weight gain we are hoping for.

That is all the news we have for tonight! Next update will probably be over the weekend so stay tuned!

Setbacks....

I am sad to report that today was Jacob's first "not-so-good" day. We knew that these would come, but unfortunately we were not prepared to deal with it and had a sad day. The good news is that treatment to fix these ailments has begun and hopefully in the next few days we'll have some good news to report.

The first setback was the PDA (the opening in the valve in Jacob's heart). Today the murmur was louder and the attending physician ordered another Echo to take a look at the opening. It has been escalated from mild to moderate. It is still not severe (the glass is half full!), but the doctor has decided to move forward and start Jacob on the medication to try and close it. These PDA's usually close with meds so we are hopeful that this will be the case and we will know whether or not this worked within 3 days. Only 10-20% of these PDA's require surgery so the odds are for us that the meds will work.

The next setback was fluid in little Jacob's lungs. They have started him on a diuretic to try and flush these fluids out, but the meds for the PDA reduce his urine output so Jacob's team might need a few days to get this worked out. They have also reduced his IV fluids because his glucose levels were a little high.

The one piece of good news we got today was with his head ultrasound. They did this today while I was holding him and he handled it pretty well! The good news is that they still do not see an IVH so this is wonderful news!! If you remember from one of my previous entries this is the most serious condition he can develop and if it doesn't appear within the first 7-10 days chances are good that he will avoid this all together.

When I arrived today he was awake for a good 20-30 minutes with his eyes open so I got close to him and talked to him (or at him) for a little while and he looked right at me. I know he probably doesn't see much or anything for that matter, but it was so nice to look at him and have him look right back at me even if he didn't see me clearly. He also was grabbing and holding on to my fingers today while I was holding him and he has a pretty strong grip! When Ian arrived after work he was squeezing Ian's finger as well.

Well it is time to turn in for the night. I have a long day tomorrow at the hospital and plan on spending the night in one of the parent rooms if it is available. My next update may not be for a couple of days, but hopefully I will have good news to report on the PDA closing.

Ian and I would like to thank all of you who have sent cards and gifts to the house. I would list all of you individually if I had the time, but there are so many of you it would take me days. I will eventually get around to thank you notes, but for the time being THANK YOU ALL!!!! Goodnight!

Kangaroo Care

Today they are upping Jacob's calorie count from 90 to 104!!! Baby steps!!! He seems to be responding well to his breastmilk feedings and it appears his digestive system is having no issues so they have decided to up his calories and continue with the 1cc a day feedings 7 times a day.

I was able to hold Jacob for the first time yesterday and for once felt like there was something I could do for my child. I have felt so helpless since last Sunday when I went into pre-term labor and have spent many days crying because I haven't been able to do anything to help him.

These sessions, called Kangaroo Care, are designed to keep him warm while I am holding him against my bare chest and help regulate his breathing and heart rate. They lie him on me covered with a fleece blanket, a heat pack and another blanket on top of that. They also shined a heat lamp on me, but he was actually a little too warm so they shut the light off for the last half of the session. He seemed very comfortable.

When they took him out of the isolette, his heart rate was around 170 which is abnormal for him. When I was pregnant and even after he was born his normal heart rate was somewhere around 140. His heart rate tends to go up when he gets stressed out and having his diaper changed is one of those moments! When they took him out of the isolette and put him on my chest he immediately settled down to a heart rate between 138-145, more in his normal range.

You can tell that these sessions really help and I feel like he is calmer when he lies with me. He lounges in his isolette and always appears comfortable, but is continuously readjusting himself, especially his legs. When he is on me, he doesn't move for the entire hour and a half and even periodically opens his eyes and looks up at me. I know he can't see anything, but I know he feels better lying with me!

Ian was able to have his turn holding him today so now we have both been able to hold him!

Feisty Guy!

Tonight Jacob will start receiving breastmilk!

I have been pumping and freezing my milk until they were ready to start him on it and tonight he will be receiving 1cc which is 1/5th of a teaspoon!

He has also been receiving an Electrolyte/Vitamin mix and Lipids via IV. They are hoping this will help him gain weight because he has been fluctuating between 1 lb 4 oz and 1 lb 7 oz since birth. I will feel much better one he starts to gain weight because he is incredibly tiny right now! The pictures do not do his size justice, he appears so much bigger and longer in the pictures than he does in real life.

You will notice in most of the pictures that I will be posting that he is wearing a "Zorro" mask and has his ventilator taped to his face. The mask is to block out the phototherapy lights that they have on him to help with his high bilirubin levels called Jaundice. In the isolette, with his mask on, he looks like he is tanning!

The ventilator is taped to his face so he doesn't accidentally knock it out which he has done multiple times already. Our little guy is a feisty one and hates to have his diaper changed! He has ripped off his heart monitors multiple times and was grabbing and whipping his wires around so much that they had to move them from his wrist to his ankle so he can't reach them! His ventilator has also fallen out a few times and he was doing so well breathing on his own that the alarms never sounded and the nurse didn't realize it was out until she went to weigh him. This is actually a good sign, but due to his size they will not take him off the ventilator and put him on the CPAP for a few more weeks.

Head Ultrasound and Echo

Today Jacob had a head ultrasound to check for brain bleeding called an IVH (Intraventricular Hemorrhage). Nearly all IVH's occur within the first three days of a preemie's life and this is one of the most serious conditions that a preemie can develop. The report came back good and Jacob does not have any bleeding going on. The fact that he arrived via c-section was probably a huge blessing and helped him avoid this. They will probably do a head ultrasound again within 7-10 days of birth to make sure that there is still nothing going on, but this was a huge hurdle.

Jacob also had an Echo today to look for a PDA. This occurs in 40-50% of all preemies born between 23 and 25 weeks. This condition occurs when the ductus arteriosus, a blood vessel near the heart which is supposed to close within the first few days after birth, remains open. This is treated first with medicine, which usually works, and then with surgery if necessary. The doctor does hear a murmur when he listens to Jacob's heart, but right now it is so small it does not warrant the medication. They will continue to monitor it until it (hopefully) closes on its own. If it appears to get louder they will discuss putting him on the meds.

Jacob's Story

I figure this blog is pointless if I don't tell you the story of how we ended up here, so here it goes! WARNING: THIS IS LONG AND GRAPHIC

I was ecstatic in October of 2007 to discover that I was 4 weeks pregnant! It was my first cycle of Clomid (due to a mild case of PCOS) and I was sure it would take a few cycles to work. My due date was determined to be July 7th, 2008 and since most women deliver their first child late I was preparing for a long Summer of being huge and pregnant. My pregnancy was pretty uneventful for the first few months, but I was mildly concerned about the fact that I had
previously had a LEEP procedure back in 2001 and mentioned this in passing to my doctor (this type of procedure can lead to an incompetent cervix). She wasn't concerned in the least bit so I let that take a back seat and tried to enjoy my pregnancy.

At the end of February, I accidentally fell out of bed (a long, makes-me-sound-stupid story!) and experienced some bleeding. I called into work and Ian drove me to the ER. I am not going to sugarcoat it. I was bleeding A LOT and was convinced that I had lost the baby. I even threw up in the car twice on the way to the hospital (which is only 10 minutes from our house) from the nerves. I was admitted to L&D for monitoring and so the doctor on call, who just happened to be my doctor, could examine me. She did an internal and my cervix was still closed, but something didn't "feel right". She decided the bleeding was most likely a ruptured blood vessel since my cervix was still closed and that everything else appeared fine. We had already scheduled a Level II ultrasound for the following week due to a VSD they had found on my ultrasound at 19w so the doctor added a few orders for the u/s tech and off we went. A week later, I had my Level II u/s and was shocked to find out that my cervix was 2.5 cm. The u/s tech explained that the doctors like them to be 3 cm or longer. They said not to worry, they were going to call my doctor and ask if she wanted me to go straight to the hospital for monitoring (?!?!?!). After waiting for what seemed like an eternity for my doctor to answer the page, she decided to have me go right to L&D to be hooked up to the fetal monitor to see if I was contracting. After an uneventful 2 hours in L&D, I was sent home with orders for another ultrasound in 10 days to follow up and was put on modified bed rest. I had access to work from home so that was the plan and we just waited.

On March 13th, 2008 I called into work since I was feeling under the weather and decided to spend the day at home relaxing with my feet up. After an hour or two, I felt something that didn't "feel right". After a visit to the bathroom, I realized I had lost my mucous plug. In a panic, I called my doctor and spoke with a nurse as I tried to explain to her through sobs what I had just discovered. She explained that women lose mucous plugs all the time and they can regenerate so not to worry too much and she would let the doctor know and have her call me back. I already had another follow-up ultrasound scheduled for that Monday the 17th so my doctor called and said to hold on until then unless I was having any pain (contractions, water leakage, etc.).

On Sunday, the 16th of March, Ian and I celebrated our one year wedding anniversary! It was hard to believe that we had already been married a year and that in 4 short months (or so we thought) we would be parents!

On Monday the 17th, we arrived at the hospital for our second Level II ultrasound. By now, my nerves had calmed a bit since I hadn't had any bleeding, contractions or water leakage at all since I fell out of bed almost 3 weeks prior. I was pretty sure they were going to tell me everything was perfect and that I could return to work. When the ultrasound tech left the room without saying anything my heart started to race with all the possibilities. She returned and told me she had paged my doctor and we were waiting for her to call back. The problem was my cervix was now measuring only 1.8 cm!! They were not able to let me go anywhere until they received orders from my doctor. Since they had paged her at 5 PM and her office closes then they had a hard time tracking her down and it was almost 6:15 by the time they got back to us. My doctor gave me two choices: head down to my hospital back home for monitoring and a possible transfer to a Boston hospital (my hospital only delivers beyond 34 weeks since they don't have a NICU) or continue driving North to Boston and go right to Tufts (which is the hospital affiliated with my hospital that has a Level III NICU). After discussing our options, Ian and I decided to head into Boston. If anything happened we would want to be in the best place possible for the baby. At this point, I was only 23w1d pregnant. They wouldn't even try to save the baby until I made it to 24 weeks so I was anxious and hoping they could do something to turn the situation around. At this point, I still thought everything was going to be fine. I don't know if I was in denial or what, but I was sure there was going to be some quick fix and they would send me home. Little did I know....

I was admitted to Triage in L&D at Tufts Medical Center and told by the doctor on call that "just in case" they were going to administer steroid shots to help mature the baby's lungs. I would receive 2 doses of Celestone over a 48 hour period. The first shot was administered and since it was 11:15 by the time I got it they decided to keep me overnight and plan on keeping me until I was Celestone complete on Wednesday night which means I was there until at least Thursday morning. I just happened to be on vacation that week for work since Ian and I had previously planned on going to Vermont for a couple of days to celebrate our anniversary. Luckily we hadn't planned anything and I just had the week off to vacation in a hospital bed.

I spent a very uneventful week at Tufts watching The Ellen Show and horrible daytime TV waiting for Ian to drop by each day after work. Since everything seemed fine and my cervix had even measured at 3.0 cm at my ultrasound Thursday morning (bed rest really works!!!!) Ian was going home at night and I was left alone with my ultrasound pictures of our little boy to keep me company. I had just found out that day what we were having since we were planning on having it be a surprise. When they said I could possibly deliver early, and girls have better chances than a boy, I decided I wanted to know what I was up against and had the tech tell me. When I told Ian that I knew what we were having he went back and forth for 30 minutes on whether or not he wanted to know. Eventually, he wanted me to tell him and we spent that night dreaming about all of the possiblities for our little guy and throwing around names (the final two were Joshua Caleb or Micah James).

On Saturday night, the 22nd, Ian came to the hospital and was planning on spending the night with me for the first time all week. The doctors had informed us that I would be discharged Sunday morning at 10 AM and on modified bed rest until further notice. I had called my boss and planned on continuing to work from home until my doctor released me from bed rest. We fell asleep around 10:30 and I woke up around 2:00 AM on Sunday with the worst.cramp.ever. It kind of felt like gas pains, but since I had never experienced a contraction or labor before I didn't know what labor contractions felt like. When it didn't happen again, I decided it must have been nothing and went back to sleep. At 3:30 AM, I woke up again with the same pain and decided that if it happened one more time I needed to call the nurse. I still didn't think anything was wrong since the two contractions were about 90 minutes apart and I knew they had to be closer than that for it to be actual labor. When I had another one at 4 AM I decided it was time to call someone. The last one was extremely painful and I had to concentrate to get through it. I woke Ian up and told him not to panic, but I was having some cramps and I was calling the nurse. By the time she hooked me up to the monitors it was 4:20 AM. Within 20 minutes, I had 2 contractions and she had called the doctor and nurse from L&D to let them know they needed to check me and possibly wheel me down since I had been rooming in the Mother & Infant Unit for the week. Around 5 AM, there was a team of nurses and doctors set up in my room to do an internal. They told me if I was more than a fingertip dilated (which is what I was when I was admitted and had no idea) I would be going downstairs, but if nothing had changed they were just going to keep an eye on me. When the doctor stood up and without expression said, "we're taking you downstairs" I had no idea what was going on. Little did I know that I was 5 cm dilated and my bag of water was poking through!!! I was wheeled downstairs and at the same time they got me on the table the contractions started coming fast and furious. They were so bad I couldn't even talk during them. They were coming so fast and were on top of each other and I had no rest in between. While the nurses hooked me up to IV's and got me prepped for surgery "just in case" they began pumping magnesium sulfate into me to try and stop the labor. Being my naive self, I still assumed that this was something they could stop. I was unaware of how far along I actually was and assumed this would all be over in a matter of hours. All of a sudden, I started to feel like my body was extremely hot and on fire (side effect of the lovely mag) and asked the nurse if it makes you nauseous. She said yes, but we don't like to tell people that because sometimes you can make yourself sick if you know it is a possibility. That is when I vomited in the bed pan she handed me. At this point, I looked at Ian and said, "We're going to have a baby today" and he says he knew right then, when he saw the fear in my eyes, that I knew what I was talking about. A few minutes later, I felt this huge pop and gush of warm fluid. I started screaming at the top of my lungs that I thought my water had broken and they all rushed to the end of the bed and realized we were game on. As they all started running circles around my bed, and Ian looked on horrified clutching my purse to his chest, I started asking the nurses why the water hadn't stopped yet. She asked what I meant and I said I felt something running down my leg. This is when the nurse started yelling orders. It turns out since Jacob was so small I had suffered cord prolapse which means that his umbilical cord had come out before him. Supposedly, when this happens the cord vibrates which is what I was feeling against my leg and thought it was water gushing. When this happens, it cuts off the oxygen supply to the baby and gives the doctor and nurses only a few minutes to get him out. As one nurse literally shoved her fist up inside me with the cord (the only way to try and keep some oxygen flowing) I was wheeled, with that nurse riding on the end of my bed, into the OR. The doors shut behind me as Ian was left in the hallway. They took off my glasses, put a mask over my face and that is the last thing I remember.

When I came to, I was violently shaking from the general anesthesia and didn't know where I was. When I looked up and saw Ian, he wasn't crying, he was still holding my purse and then it all came flooding back to me. All I said was, "Is he okay?". Ian said, "He's pink and breathing." That was all we knew. Ian told me the nurse came out and updated him periodically about what was going on, when they had him out, when they had trouble getting him intubated and when the tube was finally in and he was stable enough to transfer to the NICU. Ian said they wheeled him by and he couldn't believe how tiny he was. He said he was all bundled up, but that his head was the size of a clementine and he was VERY little. Ian also said that he didn't look like a Joshua or a Micah and that instead he looked like a Jacob.

Jacob Andrew was born at 5:53 AM on 3/23/08. He weighed 1 lb 7 oz and was 11.5 inches long. He spent 4 long months in the NICU before coming home with us on July 17, 2008 weighing 7 lb 9 oz and just 10 days after his original due date. If you would like to read more about Jacob's journey in the NICU, please feel free to surf through his Caring Bridge website which we used to update everyone on his condition for the first several months of his life: http://www.caringbridge.org/visit/jacobstewart