Steady as he goes

We are so sorry it has taken so long since our last post. We have been a little busy and sleep deprived. However, we will take this any day over going to the hospital for hours every day. Scott continues to grow and prosper. He is almost 10 pounds and has not had the feeding tube for almost 2 weeks. At the suggestion of home nurse we started feeding Scott on his side and it has made all the difference. He is much more relaxed and can better pace himself. Rarely now does he not drink the entire bottle and it seems to be much more enjoyable for him (and us). His big brother is very loving and affectionate towards Scott. We'll see if that continues when Scott is old enough to steal his toys.

Mindy's mom was here for a week around Thanksgiving and was a tremendous help. We even were able to go to the movies one afternoon. We will be here for Christmas as well, but are contemplating a drive to Long Beach for New Years. Thanks again to all for your support during the past few months. We are grateful to have such great friends and family. Phil, Mindy, Will and Scott

Homecoming!!

After 64 days in the hospital Scott has finally come home. The course of IV antibiotics is finished. An upper GI test was normal. Oh, and his heart is just fine. Now we just need to get him off the feeding tube, but that's a nice problem to have. We now trade trips to the hospital for sleepless nights, but are happy about it.

We want to thank everyone for all their love and support during the past few months. We couldn't have made it through without you.

Love,

Phil, Mindy, Will and Scott

Almost home...

Hi all. Sorry about the delay between postings. Scott's schedule has become fairly routine and normal - eat, sleep, poop repeat... His IV antibiotics finish today and after a few tests we hope to bring him home on Friday. He is still not getting enough food through the nipple or bottle so he will still have a feeding tube. We hope he won't need it for too long. We long for the normal routine of feeding, sleeping and changing without the monitoring lines and IV. Life in the hospital has gotten pretty old, especially for Mindy, who has spent many hours a day there making sure Scott gets what he needs. She has been amazing.

Hopefully our next post will be about life at home. Thanks again for all your support.

Phil, Mindy, Will and Scott

Snuggle Bug

This photo was taken by Phil's brother about a week ago - Scott loves having his right hand up by his ear. He must have been that way in utero!

Our Little Celebrity

Back when Scott was in the ICU there was a TV crew doing a segment on Pediatric Cardiology. They chose Scott and Mindy to be part of the segment. Click the link below to see our TV stars(Scott and Mindy appear after about 4 minutes).

http://link.brightcove.com/services/link/bcpid1795749292/bclid1799152753/bctid1886150751

Our 3 Kilo Boy!

Hi everyone,

As you can see we've slowed down on our blog entries. At this point, Scott is very stable and basically in maintenance mode. His 6 week course of antibiotics will finish on November 11th, which is Will's birthday and 1 week after his original due date!

Right now we are just working on getting him to take his food orally (either by breast or by the bottle). We try to do 3 feedings each day (2 breast and 1 bottle) but he still needs to be supplemented with breast milk down his nasal feeding tube. We are hopeful that he will not need the feeding tube by the time he can be off the antibiotics. But he is gaining weight each day and today was just over 3 kilograms (6 pounds, 6 ounces). He's becoming quite the big boy compared to other preemies in the nursery!

Love,
Mindy (& Phil & Will)

Photos

No news is good news

Hi all. Sorry for taking so long getting a new post up. Basically all is going well and according to plan. Scott continues to eat well and increase his volume. He does a bit more with the bottle and breast every day. He now weighs almost 6 lbs. They took out his stitches today and there is no sign of infection. The biggest threat is him being snatched away by one of the nurses because he is so cute (photo to follow soon). Plan is for Scott to come home in either 2 or 4 weeks depending on his course of antibiotics. We are looking forward to that day. Dad and Arlene are visiting this weekend and got to see him this morning. Thanks again for all your support. Phil

Slow and Steady

The past couple days have been fairly uneventful, which continues to be a good thing. There are no signs of the infection flaring up. All recent cultures have been negative and his wound site looks clean. His feeding has increased to 50 ml every 3 hours and Mindy has started to introduce the breast but we think it will take some time before he is ready for that. He is now a whopping 5 lbs 5 ozs! His breathing is stable but still a little fast for our liking, but that seems to be normal for a preemie at this age. There are no signs of any heart problems (knock on wood). We will upload more pictures soon. All the nurses think he is adorable. Of course we do too but we are biased. Will draws pictures at preschool for Scott and we hang them on the wall next to his crib. Thanks again for all your support. Phil, Mindy, Will and Scott.

Progress

Hi all. Sorry about the delay in postings. Things have been pretty uneventful, which is very good. Scott continues to eat well (not exactly eating, but at least digesting all the milk that is fed to him through a tube). His breathing had gotten faster so they put him back in the CPAP device (to help expand his lungs - see picture) and it seems to have helped. So much so that they took him off of it after two days. Now he is back on the nasal canula and is basically breathing on his own.

He has moved into crib so it feels like he closer to being normal. He is getting bigger every day and is even wearing real onsies, although they are way too big for him.

The doctors are evaluating whether at some point they can change his antibiotic to one that can be taken orally, which could allow us to go home sooner. It's not certain, but a nice thing to hope for.

Thanks again for all your support and prayers. We really appreciate it all.

Phil, Mindy, Will & Scott

Update from the Weekend

The weekend in the NICU was pretty uneventful which is a good thing. Scott continues to go up in his feedings and by this morning should be up to full feeds based on his weight. His breathing was still a bit faster than the doctors were comfortable with so he is now back on the nasal CPAP. It definitely helped as his respiratory rate did come down. I think they will see how he does for a few days and then try weening him back to a nasal cannula. The nurses also wanted to try nipple feeding over the weekend (first with the bottle and then moving to the breast) but didn't feel comfortable with his high respiratory rate. Maybe we can try once he's back on the nasal cannula.

My mom was in town this weekend and got to hold Scott for the first time which of course she loved! He also was finally able to be swaddled which he really liked - our little burrito boy!

Thanks again for all your good thoughts - hope everyone is doing well.

-Mindy

Back in the NICU

Scott was able to move back to the Intensive Care Nursery yesterday afternoon. The nurses and doctors will focus on getting him more stable and "fattening him up" as they say in the NICU. They were able to remove his chest tube this morning that he had from the surgery on Monday and I think he will be more comfortable now. His blood cultures (from the infection) since Sept. 30th have been negative so we are hoping that will continue over the next few days. His breathing today was faster than it had been yesterday but the doctors aren't too worried yet. I guess the breathing can be variable for a couple of days after extabation plus his lungs looked a bit wet from the morning x-ray. He's still tolerating the breast milk quite well so they are continuing to up in his feeding amounts. They are still feeding him directly through a tube in his mouth but hopefully soon they can start getting him used to a nipple from a bottle and then from the breast. The occupational therapist says he has a good suck but the eating process is going to take some time. Everything in baby steps...
-Mindy

Scott 8 days after heart surgery - no more breathing tube!

Scott immediately after his heart surgery on September 23, 2008

Progress

Scott made some great progress today. His breathing was strong enough to remove his ventilator tube. He looks so much better and is breathing very well on his own. I was able to hold him for an hour or so while I visited this evening. I will post some photos tomorrow. He still has a nasal canula (small prongs in the nose for a bit of oxygen), but it's contribution is small. His feedings are up to 16 ml of breast milk and he is still tolerating them well. There is even talk of moving him to the nursery tomorrow if they have space. It would be such a relief. While everyone in the PICU has been fantastic, it is still for very sick children and Scott will be better served in the NICU focussing solely on getting bigger and stronger. Plus it is quieter and more relaxed. It looks like the IV antibiotic regimen will be the full 6 weeks so the NICU will be a better place to spend that time. More to come tomorrow. Go Sox! (and I don't mean the White kind). Phil

All Quiet

Today was mostly quiet and uneventful (thankfully). He is recovering well from the surgery - the infection looks better and he is back on breast milk. The doctors want him to recover another day or so before they try to take the breathing tube out. He looks good and seems relaxed (I guess morphine will do that to you). We are trying to not get our hopes up too much and take it day by day. Because of the infection they require the nurses and staff to wear masks and gowns around Scott. It makes everything seem more serious, but they assure us it is only a precaution. Thanks to all for your nice comments and messages. Keep them coming. P, M, W & S

Post-Surgery #2

The surgery to clear out the infection went very well. It was not as widespread and deep as first thought so the doctors did not have to remove much tissue. Scott is back in the PICU and resting well. Depending on what comes back from the culture tests, it may be possible to limit the IV antibiotics to 2 weeks instead of 6. He will need a few more days of recovery before they are able to remove his breathing tubes and move him to the NICU. Hopefully there won't be any more major setbacks. Phil

Setback

Hi all. Scott developed a Deep Sternal Infection this weekend and will go into surgery today to remove the affected done/tissue and clean things out. The doctors are confident they can clear it up in one session. We hope that is the case. After surgery he will go back to the PICU to recover and continue his quest to breath on his own. More details after the surgery. Phil

Post Surgery - Day 5

Still not able to remove the breathing tube. Scott either can't breath easily on his own or has too much fluid it in his lungs, based on x-rays (the two are probably related). He has also been having some anxienty, either based on food or diaper changing, or pain from the surgery. He is consoled easily, but it is hard to see him be uncomfortable. Since we had hoped he would be breathing on his own and possible in the nursery by now it has been a disapppointing day. The doctors and nurses assure us he is still doing well and within acceptable timelines for his age and condition. The plan for tomorrow is to get him transferred to the nursery (they didn't have any room today) where they will be more aggressive in getting his breathing tube removed and having him progress as a regular premature baby. All tests on his heart have been normal so focussing on his prematurity seems like the right move. Stay tuned..

Phil

Post Surgery - Day 4

I arrived at the hospital this morning hoping to find Scott without his breathing tube but no such luck. I guess he had some trouble in the night (breathing really fast) so they decided to wait another day. The plan was to try a respiratory readiness test around 5pm today but things got too busy in the ICU. Phil just went back to the hospital (8pm) so he can find out the new plan. (Note from Phil: They did the test but he still isn't ready. They will try again tomorrow)

I am anxious to get him off the breathing machine as he can't go back to the NICU until he's off the ventilator. He lungs looked much better today than yesterday so hopefully he'll be off by sometime tomorrow. We will continue to keep you posted...

-Mindy

Post Surgery - Day 3

Today was fairly uneventful, which is good. They still haven't out his breathing tube, but the plan is to do it tomorrow morning. They have increased the amount of breast milk he is fed and he is tolerating it well. His eyes were open more today and he seemed more alert. They hope to move him out of the PICU to the NICU on Sunday. His favorite NICU nurse Anna is looking forward to having him back.

Thanks again for all your notes, prayers, food and support. It makes everything a bit easier.

P, M, W & S

Post Surgery - Day 2

Scott gave his dad a bit of a scare last night when he self-extabated. Phil was staying overnight with him in the ICU and around 10:30pm his breathing tube came out. Fortunately, his nurse was right there when it happened but it was still chaotic for awhile as the nurses and doctors had to re-intabate him. I was asleep at home and happy to have missed the event!

He was good again today - the x-rays showed more fluid in his lungs so they decided to leave him on the ventilator for another day or two. The doctors would ideally like his lungs dry before taking him off the breathing machine. They were able to take out 3 drainage tubes today which should make him more comfortable and help with his breathing. He also starting getting breast milk again which we thought was a good sign. Phil and I feel like he is stable enough so we aren't spending the night tonight. The ICU is not a very restful place to be!

We so appreciate all your emails, calls, cards, comments on the blog - it's great knowing how many people are thinking about Scott!!

-Mindy

Post Surgery - Day 1

As the old saying goes "No news is good news". Scott had a very uneventful day in the PICU (Pediatric Intensive Care Unit). His vital signs are good and everything seems to be working as expected. The doctors and nurses are all amazed at how well he is doing. The doctors come by, look at the charts, nod their heads and then move along. It's the best 'boring' we have ever felt. He still has lots of tubes and wires but the plan is to start removing them slowly tomorrow, starting with this ventilator.

The excited news of the day was that a television crew came in to do segment on cardiac care here at Children's Hospital Oakland and they featured Scott and Mindy. We'll let you know when it airs. Mindy had the night shift last night so I'm on tonight. - Phil

Surgery Day - Finale

Finally this day is over. We couldn't have asked for a better ending. Scott is resting peacefully and recovering well. All is stats are stable and look good. The doctors are amazed at how well he is doing. We hope he keeps it up. I realized after my last post that many of you many not know exactly what problems Scott has. His condition is called Tetrology of Fallot and more details can be found at http://en.wikipedia.org/wiki/Tetralogy_of_Fallot.

Thanks to everyone for your continued support. We really appreciate it.

Phil, Mindy, Will and Scott

Surgery Day - Part 3 - Good News!

The surgery is complete and everything went very well! Dr. Hanley said he found things to be a little simpler than expected and that everything he did went smoothly. He closed the hole between the ventricles, widened the opening between the right venticle and main pulmonary artery, and widened the connection between the main pulmonary artery and left pulmonary artery. Scott is off the hear/lung machine and his chest is closed. We haven't been able to see him yet, but hope to soon. He still has a long way to go, but at least the first big hurdle has been cleared. More to come. P&M

Surgery Day - Part 2

Not much to report so far. Just talked to the nurse and Scott is on the heart/lung bypass machine and they are doing the heart repair. No complications as of yet. Let's hope it stays that way. Stay tuned...

Surgery Day - Part 1

We arrived at 6am to give Scott a bath and make sure all was OK before his trip to the OR. Everything went well last night and he looked good this morning. He is finally back up to his original birthweight (4lbs, 5 oz). Now we wait for updates. Thanks to all for your kind words and prayers. It really helps. P,M,W&S

A small way to help

Many people have asked what they can do to help. One way would be to donate a pint of blood. Since this happened so quickly we weren't able to donate enough to offset what they will use during and after surgery. Just visit a local donation center and give a pint. Thank you. Mindy and Phil

Will thinking of Scott

Will is thinking about his little brother and hoping he can come home soon and play.

Close up of Scott - Day 12

Sco Scott is wearing the latest in Fall breathing fashion - a CPAP machine to help his lungs expand and give him a little extra oxygen than normal air.

Scott in his isolet - Day 12

Scott has steadily gained weight after the initial loss after birth. He is now up to 4 lbs 4 ounces.

Scott - Day 12

Scott is still staying stable - the doctors and nurses are watching his oxygen saturation levels very closely. He just needs to stick it out until Tuesday the 23rd when he'll have his heart surgery. Phil and I met with the nurses yesterday to go through all of the pre-op process. He will be in surgery somewhere between 4-6 hours and then in the pediatric ICU for approx. 4-7 days. The nurse went through all of the potential problems that could happen post surgery which of course scared us both. My friend Andrea has offered to watch Will for a couple of days so Phil and I can just be at the hospital as much as we want. In the pediatric ICU, one person can sleep by the bedside so I imagine we will switch off for the first couple of nights. My mom is also coming up to be with us for the surgery.

We appreciate all of the support we've been receiving from friends and family - please keep Scotty in your thoughts on Tuesday!

Scott and Mom on Day Two

Little Scotty and Mom on Day Two. He needed the oxygen tube to help his lungs develop.

Scott scheduled for surgery on Sept 23

Hopefully he remains stable enough to wait that long. Dr. Hanley (the top surgeon in the Bay Area for this type of problem) is scheduled to do the surgery.

First Post - Welcome Scott Smith Polishuk

Hi all. This is our new blog to follow the happenings of the Polishuk/Williams clan. As we begin the big news is the arrival of Scott Smith Polishuk on Sept 9, 2009. He was 2 months early and will be in the hospital for awhile getting bigger. He will also need surgery on his heart to fix some congenital defects. The doctors are confident they can fix them without any major long term effects. Keep your fingers crossed.