Updates Journal

**Newest entries appear at the top of the page**

03/27/03
Andrew is about one and a half years old now and is doing great.  He has no medical complications and is a healthy little boy.  It sure has been quite a ride since October 16, 2001.  We did it though and are stronger because of it.  If you are going through the scary situation of having a preemie I hope that our story can help inspire you to hang on day by day until all of the sudden your little preemie isn't so preemie anymore and is running all over your house.

01/23/02

Andrew had a follow-up visit with his doctor.  He weighed in at 7 lbs 11 oz.  His heart and lungs sound good and his blood tests came back good as well!  He is going to touch base with the Neonatologist to get an idea of how long that Andrew will need to remain on his monitors.

01/15/02
I took Andrew into his Doctor for a check-up because after going several weeks in the hospital without having an apnea he had one around 8 pm the night that he came home.  Everything checked out okay and he thinks that it was from the stress of adjusting to a new environment.

01/14/02
Andrew was released from the hospital today
weighing around 7 lbs 8 oz. He had an MRI done on Thursday and that came back looking great! His hydrocephalous is gone. :) He just has a few small lesions left over that should go away with time. He had his hospital photos taken on Thursday also.

He will be seeing his Dr in Grand Rapids once a week for a least the next month. He wants to follow him closely. Andrew is going to see his pediatric ophthalmologist on this Friday for a follow up. He needs to visit a feeding clinic and also his neuro surgeon and neurologist in 3 to 4 months.

Andrew is on Simalac Neosure for his formula and we have to add vitamins to it twice a day. He is home on Theophylline, Aldactazide, Sodium Chloride and antibiotic eye ointment. He is on an apnea home monitor all the time and also an oxygen pulsimeter for his feedings.

He seems to be adjusting well. On Monday night he had his first apnea and brady in several weeks. He required stimulation for it... talk about scary! They think that it was just from the stress of being in a new environment. Today he was doing MUCH better!

Until the end of April Andrew can not go out into public :( We have to wait until the end of RSV season so that the risk of him getting it is very low. Which means that there's no grocery shopping, church, or the mall. Kyle has been a great help and got our groceries tonight. :) He is also not suppose to be around other children until the end of April. :( A few days before we left the hospital there were three cases of RSV admitted so we know that it's going around the Grand Rapids area right now and need to be especially careful.

If Andrew gets RSV he will most likely end up back in the hospital and develop chronic lung disease that will stay with him for the rest of his life. In preemies and small babies it acts a lot like pneumonia. The alveoli at the bottom of the lungs fill with fluid... once that happens the cells are damaged and can not heal themselves. Adults can get it too, but usually it just appears to be a cold... some adults don't even show symptoms.

Andrew can have occasional visitors starting next weekend. We just ask that if you have been feeling under the weather, had a cold, or the flu on or a few days before you were planning on stopping by that you reschedule. The hospital also said that if anyone gets over here and starts sniffling, sneezing or coughing that they need to put on a face mask just to be safe. And, as with other babies we need to wash our hands before picking him up.

01/10/02
The preliminary results came back from Andrew's MRI that he had at 10 am.  They show that he has NO PVL.  What a relief & blessing!  They said that it is not something that can pop up later either.  The only thing was that he had a few small lesions left over from his hydrocephalous.  There is still a possibility that he could have a few muscular developmental set-backs, but judging by his immediate progress if there is any it will be very slight or non-existent.

01/09/02
Today we found out that if Andrew has a good rest of the week that he will get to come home on Monday 1/14/02.  This Saturday we are going to room-in at the hospital and get use to the home apnea monitor and oxygen pulsimeter.  Andrew will be coming home on some medications that we will be giving him here, pediatric vitamins, and also on Neosure... a high calorie baby formula.  This morning he weighed in at 6lbs 14oz


01/02/02
Andrew is at high risk for having  Periventricular Leukomalacia (PVL).  Children who have PVL are at high risk for cerebral palsy.  Only time will tell how this will unfold.

12/29/01
Guess who turned 6 lbs today???


12/21/01
Things are still about the same with Andrew.  He is slowly gaining weight, is still having some of his feedings through a tube and some through a bottle.  He is having occasional alarms throughout the day and has been very tired.  We were told that it is expected that his progress is slow right now because most of it revolves around breathing and when he was born he had severe respiratory problems.  It will take him awhile to catch up because of his complications when he was born.  He will be fine once he catches up.  :)

12/18/01
After being around Andrew yesterday you would never have guess that it was the same kid today!  He drank 4 full bottle feedings with no problems.  He was on oxygen support through a nasal canula, but that was all.  He is now up to 55 cc's every three hours.  I gave him a bath this morning and he really enjoyed that.  He weighs 5 lbs 8 oz already.

12/17/01
Andrew had a rough day.  We were going to give him a bath but he was having to many alarms and not keeping himself together.  He was not managing his feedings well.  :(

12/13/01
At tonight's weigh-in Andrew was 4 lbs 15.9 oz!  Just 0.1 oz away from 5 lbs.

Things are going pretty much the same for him.  He is still having problems with periodic breathing and swallowing and breathing after he sucks during his feedings.


12/08/01
Yeah!  Tonight was the first night that Andrew had an all around  positive experience bottle feeding!  ( Right now he gets 42 cc's every three hours.)  We went into the hospital to be with him for his 9 pm feeding and he was showing signs of rooting so, the nurse decided that it would be a good time to try his bottle feeding for the day.  He finished it with stopping only twice to burp and had it down within 15 to 20 minutes.  The only thing that he required was a little oxygen support every once and awhile.  All that the oxygen support entails is... the nurse holds an open ended tube that blows out 100% oxygen in the direction of his nose.

His weight tonight was
4 lbs 9.5 oz

12/05/01
Andrew was taken off of the nasal canula today!  He has gone two days with no true alarms.  The nursing staff has also decided not to leave Andrew's feeding tube in and reinsert it for each feeding.  He kept pulling it out in-between feedings, even though it was taped into place.

12/04/01
Andrew weighed in at 4 lbs 5.3 oz and was taken off of his reflux medications.


11/26/01
Tonight we
were only able too see Andrew for about 5 minutes because there was another baby on its way to the NICU. We had a surprise when we went over to Andrew's Isolette and looked in.  At first we didn't see him and thought that one of the nurses had him out... to our surprise no was holding him.  Kyle got a closer look; he had wiggled his way down to the bottom of the Isolette... and pulled his feeding tube all the way out and off including the tape!!!  The nurses got a laugh out of it too because during that whole time that he did that he never alarmed.  Believe it or not Andrew is already up to 3 lbs 11 oz!

11/19/01
Andrew is continuing to do well.  We have not gotten the official report back from his head ultrasound on That was taken yesterday morning.  The preliminary report said that it was improved... to what degree and what improved is what we are waiting to find out.  He is still putting on weight.  Currently he is at 3 lbs 3.7 oz  Most of his alarms are around his feeding times.  His sphincter muscle is not toned and developed enough to keep all of his food down in his stomach.  When it comes back up it doesn't come all the way back out and sits in his throat.  The extra stress and activity cause his heart rate to slow down.  They have started him on two acid reflux prescriptions to try and keep his food from creeping out of his tummy.

11/16/01
Sorry the updates got a little behind. We had company over the weekend and then I had the flu on Tuesday and Wednesday. I'm feeling better now and so far Kyle hasn't been feeling sick. Hopefully, he won't end up getting it!


Andrew is still improving.  Andrew's head ultrasound results came back and it looks like his bleeding has stopped! So, the shunt procedure is not looking like something that Andrew will need to go through. He will continue to get a head ultrasound every Monday.

He is off of his IV and they are still increasing his feedings little by little. As of 2 am his feedings were bumped up to 20 cc's. He is still getting his feedings through a feeding tube that goes directly into his stomach. In another week or two maybe he will get a shot at trying to take from a bottle. One of the many major obstacles with preemies is that they don't have the desire to eat on their own. He does have a sucking reflex, and they have been working with him and a pacifier when he gets the tube feedings to encourage him for when his bottle day comes.


On Monday, 11/12/01, he hit
3 lbs and has been staying right around that weight throughout the week.

11/10/01
Andrew is still doing well.  His feedings have been increased to 10 cc's every two hours.  He has been having less alarms during the day and many of them he corrects on his own.  Today his umbilical cord stump fell off and his belly button is starting to heal.  He also got some new preemie caps sent to him from his great-grandma and aunt.  :)

11/08/01
This morning Andrew graduated out of his warming bassinet into an Isolette.  Last night they also decided to skip the CPAP when he came off of the ventilator and put him right back up to a nasal canula.  On the 6th he was given two transfusions which quickly helped him come back to good health.  His color is back... he had started to get pretty pale and pasty looking over the past few days.  His feedings are still going well.  Slowly he is starting to put on weight. 

Last night we finally got to hold Andrew again!  That was only the second time that we have gotten to hold him since he was born.  Right now we can not hold him for extended periods of time because he can not maintain his body temperature on his own yet.  The closer that he gets to his estimated due date the more often and longer we will be able to hold him.

11/07/01

Yesterday Kyle's contract extension was officially signed and is now until February 28th. This is a very good thing because his company is continuing to re-evaluate on a monthly basis. It sounded like there is a possibility that more of their employees could get laid off. They are suppose to be receiving more funding for the first quarter of next year. Hopefully, they will have the funding by the time that Kyle's contract here is up and the layoffs will be over. We'll find out when we get there I guess.

Andrew gave us a little scare on Monday night. He didn't take to his feedings and his abdomen started to get really puffy and he was uncomfortable acting and cranky. They were concerned about his bowels and warned us once again that he might have to be transferred to the other hospital out here to have surgery on his intestines. He had x-rays on Tuesday and had them reviewed by the staff. They could not find anything wrong and after giving him a short rest on his feedings they started him back up on them. He has been taking well to them again.

They also said that they will probably be switching him from the ventilator to a CPAP today! :)

11/05/01

I just got back from the hospital and this time I have good news! Andrew's ultrasound reports came back and he has made significant improvement on his own. They weren't able to tell me yet what grade bleed that his was being rated, but they did say that he is doing well enough that he will stay at St. Mary's hospital and they'll continue on like they have. He will have an ultrasound every Monday to make sure that he doesn't slip back in the other direction and they will also keep watch on his behaviors. If any of his behaviors change and cause for alarm then they will order an ultrasound immediately and go from there.

They have decreased the amount of fluids that he is getting through IV after the amount for his feedings was increased. He is now up to 9 cc's every three hours. He has been taking very well to his feedings; this has allowed them to increase the amount rather quickly. He is also off of his antibiotics as of this morning. :)

Andrew will be monitored throughout the day and evening and they are going to decide if he is ready to come off the ventilator yet. He could be off it as soon as tonight or in the morning. They are not sure if they will take him straight off of it and leave him with no aid or have him work his way back to no aid... first by switching to the CPAP and then to the nasal canula. So far today he has been down to NO alarms unless he is being suctioned. That is one of the main reasons why they are considering taking him off of the ventilator again.

His color is getting better every day and he is starting to get his spunk back too. You can definitely tell that he is feeling much better.

10/30/01
Kyle and I were called into the hospital today to see Andrew's doctor. The diagnosis is premature and not official as of yet, but most likely what we are looking at is Andrew having Post-Hemorrhagic Hydrocephalous. There are two scenarios that we are looking at either (please excuse my lack of medical terminology to describe the following... I'm not familiar enough with all of the terms yet) the tube that drains the third ventricle into the fourth ventricle is clogged by a blood clot and not allowing the fluid to drain or the spongy material that rests above the spinal fluid is clogged and not allowing the fluid to drain.

Dr. Winslow said that we are going to wait until Monday and have another ultrasound taken to see if the problem is self correcting. If it is not and is getting worse then Andrew will be transferred to Butterworth-Spectrum Healthcare's Hospital. There he will have a surgery to implant a shunt under his skin that will run from his brain to his belly to allow the extra fluid to drain.

This is definitely not what we were expecting even a few days ago! There are some positive things in this though... Andrew has never had a grade 4 bleeding of his brain and they will not let it get to that stage. With a grade 4 bleed there is permanent damage. With the level of bleeding that Andrew has we were told not to expect any long term damage. :)

So, until Monday we sit, wait, and play the waiting game again.


10/30/01
Kyle and I had a wonderful weekend and got to see Miss Saigon in Lincolnshire, IL. It was a wonderful performance and we enjoyed the show very much. We also got to pick up some clothes for us and some of Andrew's things from our apartment in Schaumburg.

Last night when we were at the hospital we got some news that is on the downside. Andrew's head ultrasound came back and his grade one bleed has been upgraded to a grade two. Granted it is a low level grade two, but they think that there also may be some fluid build up in his ventricles. They are having a neurosurgeon review his ultrasounds to see if he has Hydrocephalous. If he does have Hydrocephalous then he may have to be transferred to a children's hospital for surgery. He would then remain their for the rest of his stay in the NICU.

We don't know anything for sure yet. We are all waiting to see how Andrew's body is going to respond and what the findings are from the doctors at St. Mary's.

For anyone interested in reading more about Hydrocephalous I scanned the pages out of a book that we have on preemie's that discuses it. The link is on the website under alien baby.

Take care. We'll update you when we have more news.

10/27/01
Yesterday (Friday) Andrew had what in the NICU they refer to as a "naughty" day. He had to many alarms where he stopped breathing, so first they tried moving him up from the nasal canula to the cpap, but he didn't respond much better to that. Then they decided that he needed to be put back on the ventilator. He was really tired out and seemed pretty uncomfortable.

They pulled blood to have some tests done and do some blood cultures to make sure that he doesn't have a bug or infection. Chest x-rays were also taken to make sure that he wasn't developing pneumonia.

I called this morning and he is doing much better. We are going to play it by ear to see when the ventilator comes out and he works his way back down to the nasal canula. They are increasing his feedings to 2 cc's every three hours he had been on 1 cc every 12 hours. This should help him gain strength quicker. The ventilator will give his lungs a chance to rebuild strength too. They haven't received any word from the lab about the cultures and they said that no news from them is good news. His chest was clear... it seems like he just had a bad day.

If anything changes we'll let you know.

10/26/01
Andrew is still doing great. There aren't really any changes other than his Jaundice levels are going down.

Kyle and I are off to see Miss Saigon this weekend and should be back around Sunday sometime. Have a great weekend.

10/20/01
Andrew is still doing really good. They've moved him off of the cpap and onto a new breathing aid device that is much less intrusive than the cpap. They are going to be keeping him on it for a bit to make sure that his little lungs don't get to tired out.

We've pasted the critical hours in which most of the problems occur with flying colors! :)

He does have a grade one cranial bleed, but that was expected and grade one is the lowest level bleed. When we start approaching a level 4 is when they REALLY start to worry and take corrective action. Right now there is no need to treat it and they usually clear up on their own.

The next big hurdles for him are switching off the iv's from the artery and two veins in his umbilical cord to either his head, leg or arm, and in about a week they are going to start him on feedings. When he starts in on his feedings there is a chance that he can develop an infection in his intestinal track.

His swelling and extra fluid retention is way down and his face, arms, and legs look much better. He got his first hair washing yesterday and almost liked it. :)

He has a massage therapist that is working with him once a day, the nurses are giving one massage a day, and Kyle and I have been giving him his third massage of the day. He is REALLY liking these. He is also catching on really quickly on how if he starts to cry (which sounds cute in itself because it is a whimper cry right now with his lungs being so small) that it makes it hard for Kyle and I to leave. Ah, the dilemmas of parenthood are evident already. LOL

Last night we purchased a book of Shel Silverstein poems to take to the hospital with us to read to him while we are there. Within the next week are two we are hopefully, also going to be getting a digital camera so that we can put photos up more frequently. I've been taking more but haven't used the current roll up yet. I'll let you know when we have those posted.

10/19/01
So far everything is still looking on the up. Andrew is down to normal human oxygen levels now. :) He is still wearing his CPAP (it's a little machine that pushes air into their lungs through their nose) and will for a little while now. They said that he could get by without it for awhile, but then he would get to fatigued with his lungs and have breathing problems. So, now it is being used to help strengthen his lungs.

Thanks to all for the notes of encouragement. Take care.

10/18/01
We're home from the hospital.

So far he is doing well, but he has a rocky road ahead of him and he will most likely need to stay in the hospital for at least three months because he was born at 28 weeks. Your prayers are needed for our little one and us. It is really rough to see what he is going through and having to adjust to not being able to have him here with us.

Andrew will stay in NICU for his whole time at the hospital and unfortunately to everyone who would like to visit him he can't have visitors other than Kyle and I and his grandparents. :( We will be posting many pictures and stories to share and when he is able to come home then he will be ready for face to face visits.

I'm exhausted and need to head off to bed. There is a story on the website that explains things in more detail if you'd like a better idea of what is going on with him and when I'm more rested I'll send more info out.