Big Boy Gets Bigger and Moves to a Crib

Today (Monday May 25th) Sebastian is now weighing in at just under 4 pounds or 1814 grams. He is looking better and his primary nurse Cheryl is back to get him over the horrible weekend. They have made the decision that Sebastian is getting too big for the isolet and he is now in a crib. Funny what taking him out of an enclosed area can to do regulate his temperature. He is the only baby in the NICU in an open air crib and he will have to adjust to the new noises. As of today (Tuesday May 26th) he is over 4 pounds, has no fever and has adjusted to his new surroundings as he is requiring less oxygen from the CPAP. This is all very good and he is progressing well.
Friends and family ask if he will be out soon as he is getting bigger but unfortunately they do not release him based on weight it is based on his condition and at the moment he is not going to be released until at least his due date of July 24th.

Also Sebastian is wearing clothing to bed. After looking at him for 6 weeks in just a diaper it is a little weird to see the new changes.
This picture was taken when Cheryl had his CPAP (head mask with oxygen) off in order to massage his face and clean him up. The tube in his mouth is for feeding. His head is a bit out of shape and long as it is somewhat formed by the head harness for the CPAP. I have been told that this will sort itself out in time. Sebastian pulled his feeding tube out three to four times yesterday. I would have thought by now he would have realized that what comes out must be put in and that is not the most comfortable. He will learn.

Crazy Sleepless Weekend

This past weekend was one that I am glad is over. Sebastian had some issues with his breathing and had a fever again on and off. I spent most of my weekend in the NICU trying to figure out what was going on with my child (along with the medical team). After spending on average 5-8 hours a day in the NICU for the past 45 of 47 days I would think I know my child (also I listen to the nurses who look after him).

This weekend I had two shifts when Sebastian had nurses who had never cared for him before and did things differently. As I have been told they can never give you stats on what will happen with your child as "every child is different" (how many times have I heard that). So when I had a nurse who insisted on setting the isolet temperature at a higher level then Sebastian likes(or for that matter can tolerate) I became concerned. I explained about how he liked the temperature cooler to avoid a fever but this nurse did not listen to me and insisted on doing things her way. Sebastian has been running a fever on and off since birth and they are constantly taking blood or urine (via cathater). They put him on antibiotics and two days later take him off when they find nothing. The nurses who care for him on a regular basis just think that he is very hot blooded (like his father) and needs to chill in a cooler atmosphere. The main concern is that infection may set in so they can not ignore the elevation in temperature he gets at times. So we go through a regular routine of this. He may get a fever but when he is taken out and put on me to cuddle within 10 minutes his temperature is back to normal. This being said we had a weekend of ups and downs with everyone trying to figure out what to do. Final result...they are putting him on antibiotics for a week which should rule out any infection (or get rid of it). If he still gets temperature fluctuations then they are going to assume that my child just has hot blood at times.
So the conclusion of the weekend and after a two hour meeting with the head of the nurses is the following:
Sebastian will only be looked after by nurses who know how he copes with things. Two of the weekend nurses who did things I did not like will not be caring for him again. Last and most important they will not be loading him up with antibiotics after they run this course and rule out anything that may be infecting him. We have alot of ups and downs in the NICU and I have made the choice not to post most but this weekend was particularly trying on all of us.
I am thinking that things may look better after this because as they say "in the NICU it is two steps forward and one back". Time to move on.

Today (May 22nd Sebastian weighs in at 1717 grams or in the other language 3 pounds 11 ounces).

This is one of the few occasions that we can see Sebastian without anything covering his face.

Boy do I love this child. I think he is beautiful but I think I am a bit partial.

One Night Live (great concert)

SO we managed to have an evening out (almost like a date night when we knew Sebastian had the best of Baby sitters). The evening started with a visit to Sebastian who was doing well.
We arrived at the Air Canada Center about 15 minutes prior to the show starting and found our seats which were very good (although not close enough for great photos). It was very strange to be approached by staff member from Sunnybrook who thanked me for doing the video as she had seen it in the making. Very nice but strange. Our clip was put on between the Three Canadian Tenors and Sheryl Crow preforming. I must say it was REALLY odd watching a three minute clip of your self on the Jumbo-tron and a bit freaky when everything is so enlarged. You will see that Steinar managed to get the worst possible shot of me when I was up on display. I may have looked tired but it is amazing what they can do with editing.
I was fine throughout the segment until they had the most beautiful video of Sebastian that I had not seen came up on the video and that is when the tears came.
During intermission I wondered around trying to figure out how I was going to meet Sting. I met someone who knew someone who had connections and they managed to get me to the floors to get pictures up close and I am sure that had I stuck around I would have been able to get up close and personal. The only problem was that by the time the concert was over (or near ending) I had hit my wall. I did not care who was up on stage I just knew I needed to get home and get some sleep. Also I was the person who stood up the whole concert and danced like a fool while the people behind me could not see much other then my backside(which I am sure was very exciting for them).

The concert was amazing and I had people approaching me to ask me how Sebastian was doing. I was stopped over twenty times and people were pointing me out and smiling at me as I walked by. A very strange experience yet very positive. I would do it again in a heartbeat as I am sure it helped generate some money for the amazing new facility the are creating to help women and babies.

I will be getting a copy of the video and I will blog it for those interested.
What a night but I am sure I will pay for the lack of sleep for the next few days.

Random shots of Steinar and Sebastian (looks more like daddy now)

Need I say more. Thanks for taking such great pictures Michelle. We appreciate them.

BIG STEPS FOR THE LITTLE GUY - May 18th

Today many things happened. Sebastian gained over 112 grams and is now over three and a half pounds. He is getting bigger and for some reason after a few bad days seems to be taking a step forward. He has had tubes in his lungs since birth. Several weeks ago they tried to extabate (spelling is not the best) him (pull out the tubes) and tried to put him on a CPAP (oxygen machine that although looks bad is non invasive). At that time he did not respond well and they had to reinsert the tubes. The sad thing is that it is a catch 22. He needs to tubes in his lungs to breath but the tubes do damage to his lungs.
For the last few days he has been trying to pull the tubes out so they decide today that they would extabate him again. So far so good as he is breathing with only the CPAP which will allow his lungs to heal. We are so pleased as we did not want them to reinsert the tubes again. It is not the most pleasant thing for Sebastian to go through. Having this new breathing system looks horrible but it is such an advancement for him that we are the happiest we have been in some time.
I was able to be with Sebastian when they did they procedure and remained calm (unlike last time when I had to leave the room). As of tonight Sebastian is doing as well as he had been on the tubes and we could not ask for more.

Also for those overseas my little man is weighing in at 1477 grams. (As you would say Aunt Theresa "he is positively fat in your part of the world".

Sebastian growing big and getting cuddles -May 17th

It has been a while since I have been able to Kangaroo Sebastian as he has not been doing well enough for the nurses to want to take him out of his isolet. After having a temperature for several days he was finally stable enough (or having a good day) to let me hold him for an hour and a half. It seems that when I hold him we are both at our best and I finally feel I can calm down and relax as my baby is where he should be. I know that every time I get the opportunity to hold him is a blessing and I do not take it for granted for one minute.

Aunt Theresa sends us a handmade sweater for Sebastian

My Aunt Theresa (dad's sister) who lives in England was kind enough to send us some beautiful handmade sweaters. We are very grateful as she is always thinking about us. The blue sweater is one Steinar's mom made and sent to us several weeks ago just prior to us receiving Sebastian's. The size difference makes me laugh.

Bottom Burps and Lots of Poop

As you can see Sebastian has gained alot of weight over the past two weeks. As you can see his tummy is really big. That being said he is now dropping weight as the plan is to make his tummy go down. This means hourly massages to "get things moving". All I can say is for a little guy he has alot leaving his body. He dropped 25 grams last night.
I still can't get over how big and cute he is.

Sebastian gets filmed again

Today (Friday May 15th) Sebastian was a superstar. They (the hospital) doing the video for One Night Live decided that I was the strongest speaker of those interviewed for the fundraiser(surprise since I am so quiet. They wanted additional footage of me with the nurses as I speak so strongly about the care Sebastian and I received at the hospital.
Most of the nurses do not want to be filmed. Cheryl, Sebastian's primary nurse, did not have a problem with it. She carried on and did her job and I visited my son. This video had no audio to it as I had already done the interview.

I was told by Kevin (video guy) that since nurses did not want to be filmed it looked like the NICU ran itself with no staff.

The beauty of helping with this fundraiser is that I will receive the footage filmed and have them as my memories from this time and date (also my mom's birthday).

I will add the video to this blog when I receive it.

Craszy Week in the NICU

This week did not leave alot of time to blog. It was one of those up and down weeks were you proceeded two steps forward and one back. At the beginning of the week based on our son not looking great they took some blood work to check. Sebastian had a bladder infection, the amazing staff at the hospital immediately put him on antibiotics as a precaution (prior to getting the results) which in turn cleared up his infection (thank god). What was upsetting to me was that they had to put a cathater in on two occasions in order to get the urine to test. I was not in the room for this (poor little guy).

Later on in the week he developed a fever (again)just after he had another blood transfusion. They (doctors) have subsequently decided that he was having a reaction to the donor blood as this has happened after the last two blood transfusions. Needless to say we thank everyone who donates blood but if needs another transfusion then they will be taking from another donor. Other then that we have had a "reasonable" week as far as his health although it has been very stressful for mom and dad.

Daddy holds his son for the first time .

Steinar finally gets to hold his baby. What a great moment for all of us. What more can I say. Sebastian was happy. None of his bells and whistles went off and daddy remained calm. They both had great bonding moment and when Steinar spoke Sebastian opened his eyes and looked at him. Cheryl (Sebastian's primary nurse) arranged for this moment as I was out of the room preparing to cuddle my son. I could not have asked for anything more.
I think Sebastian is looking like daddy as his hair starts to lighten up as well as his eyebrows. My friend Michelle came by for a visit and took some awesome pictures that will be added at a later date.

Friend Leaving the NICU

I must say it was a bit of a shock today in the NICU. I have become close to one of the mom's (Amanda) who has a beautiful baby (Peter) in the NICU. Amanda is special because she had similar issues to me with her pregnancy and was admitted and stayed several weeks prior to having Peter. Amanda was my motivational angel. I was told about this woman (no name because of confidentiality)who managed to keep her baby in for several weeks. When I heard about her she gave me the hope that if she could do it I could. Over the last four weeks she has been a constant friend and means of support as we see each other often in the NICU (daily). If I don't see Amanda or her husband Mark you know that something is not right as they are constantly at the beside of Peter.
Today was a sad day as I entered the NICU I noticed that Peter's isolet was empty. Several things run through your mind when you see this. Either something has happened to the baby or the health of the baby has improved to the point that they have moved the baby to another hospital (level 2) or upstairs to the Noenatal Unit.

Peter was fine and had been moved to another hospital in the city. I had a note attached to Sebastian's isolet with her contact information. I was really happy for the family but felt a huge loss that I would not be seeing this wonderful family (at this hospital) again. I am so grateful that I could share my stress, concerns. Sometimes we managed to relax for a minute and let our guards down as we went through the same journey. I know that the time will come when Sebastian leaves the hospital and I know it will be sad for us as we leave what we have known for several months.

I will think about Amanda, Mark and Peter every time I enter the NICU. I know that the day will come when we are moved which means the health of our baby and his future is looking better.

Our Big Boy -Sebastian is over three pounds. YEAH!

It is Sebastian's one month anniversary and he is now over the 3 pound mark. He is rapidly gaining weight and they usually weigh him about five times a night when he has gained a large amount. He is doing fine just going through a "growth spurt". I personally think that it may have something to do with the four boxes of girl guide cookies I have eaten during midnight pumping this past week. I have been assured that my milk is not the cause of this growth spurt. However that does not mean I can eat four boxes of cookies a week. :)

Mothers Day and Sebastian is one month old.

What a great day for us. Sebastian had a few days of not doing so well (one of those swings we have been told to expect) but today he was considerably better. He had a visit from Grandma and Grandpa who had not seen him since near to birth due to colds and other things that would keep them out of the unit. Sebastian behaved and would not wake up for his grandparents but slept peacefully. It was a day to remember as it was one of the most special moments especially since I could share it with my parents.

Our son is a getting BIG

So we have hit that magical number (as far as weight) and Sebastian is now officially over 3 pounds. I have no pictures today as he was a little under the weather yesterday and I could not even think of photos. Today is a brighter day (although looking at all the rain you would never know that). He is gaining weight rapidly and they have done every test to make sure that it is not something abnormal. Nothing is wrong, he is just eating and happy.

Mothers day is tomorrow and we will see what the day brings.

My First Mothers Day - what a nice surprise

I must say that today was filled with many positive things. Sebastian is almost at the three pound mark as he is weighing in at 1305 grams. He is having a "good" day. The sun is shinning and I received my very first mothers day card. Reality set in. I am a mother now. What a great feeling. The card was extra special not only because of who it came from but how nice it was put together (with a picture of Sebastian and I). Many thanks to you Susan and Danny for the love the support and the card. It made my day and was very unexpected. It will be a keep sake for many years.

One Night Live - Sebastian a super star

We were approached by the Public Relations person from Sunnybrook Hospital and asked if we could shoot a video to be shown at a concert on May 21st. It is a fund raiser for the hospital called One Night Live and has performances by Sheryl Crow, Sting and the Canadian Tenors.
So yesterday on no sleep and looking like a mom from the NICU unit (tired and not made up) I was filmed for the concert. I am a bit nervous as I had a bit of a cry during the interview (makes for good fund raising viewing) and made the interviewer cry as I spoke about how grateful I was for the staff of the hospital saving the life of my baby. I have been told that they will play this video in front of the 30 thousand or so who attend so I am a bit anxious to see how they piece the video together. Steinar and I will be given tickets to attend the event and I am trying to find the right connections so that I can meet Sting as I have always loved his music. I doubt this will happen but if it is a possibility then I will make it happen.

They will send me a copy so look forward to seeing it on the blog when I get it.

Daddy will start the kangaroo care soon

I was lucky enough to hold Sebastian again the other day. I am not able to everyday as it is dependent on his day and the nurse who has to move all his tubes. Steinar came at the right time and was able to enjoy his son at a closer proximity. I am hoping that this weekend (with the right nurse and the right conditions) Steinar will be able to hold his son for the first time. He will find it a very bonding experience and I am very excited for him.

Our little angel is putting on the beef

I know that they are feeding Sebastian every two hours and I am working as hard as he is to keep up with the milk production so that he is well fed. He is currently up to 18ml of breast milk every two hours. It was not too long ago that he was at 1ml every two hours. He has days when he does not tolerate his milk and sometimes they have to give it to him again. They feed him through a tube in his nose and after the feed when things have settled they take a syringe and pull back on the tube to see if they have any left in his tiny tummy. If they get several cc's back they just push it down again. At this many weeks they (dairy queen) start adding vitamins to his food as he would be getting alot more from me had he remained where he should have.
The good news is that he is gaining weight but sometimes we are shocked by how much. One night he put on 65 grams and they weighed him four times to make sure they were correct. They were and in the morning his weight went down considerably after going through four diapers (no need to get more graffic). I found that really funny but I am sure the nurse did not at 6am in the morning (although they are used to it).

Three days ago he put on close to 100 grams and after being weighed five times they confirmed that it was a confirmed weight gain. As of yesterday he had not had another episode so he now at the weighing in at (drum roll) 1258 grams for those of you who speak the other language (Aunt Tiny) he is about 2 pounds 11 ounces.
The weight gain keeps the hospital and us happy so lets hope this keeps up.

The swinger

For those reading this blog I am a little behind in catching up on Sebastian's progress and our state of mind. This past week has been crazy busy with lots happening. Sebastian has been "stable" for the most part although we have had a few ups and downs. The doctors are having a hard time trying to regulate his oxygen and have told me that it just takes time for his lungs to develop. This week if he were still inside me he woujld be at 29 weeks.
In the NICU they call him "the swinger". That is because his oxygen levels swings from very high to the low side. Not for any other reason. I guess he could be called something worse(although when he is older I don't want him being called "the swinger"). I can think of better names for him.
They are hoping with time that this little problem will fix itself although every time he swings then all the bells and whistles go off and mommy and daddy's oxygen levels change as well.

It also does not help that he loves to pull out his lines whenever he gets a chance. Another day in the NICU and more to come is what I have been told.

Sebastian does his first photo shoot

Today upon visiting Sebastian I was asked by the charge nurse if I could do a photo shoot with the Toronto Star as they wanted to do a photo section in the Mothers Day issue. I was pleased to do it and after about 50-60 photo's were taken we were done for the day. So for those who get the star and live in Ontario then look for Sebastian Bertelsen in the paper this weekend. For those who don't get it I will take a picture and put it on the blog. Also the photographer will be sending me the pictures (I will post some of those).

We were asked to do another really cool thing to support the hospital but I will save that for a blog later this week. Very exciting he is going to be a superstar if he is receiving this kind of media attention already.

Sebastian is doing well and looks wonderful and healthy. It was a long but happy day.

Two Steps Forward and One Step Back

As you can see Sebastian is so much bigger then when he was born. These pictures were taken on my visit yesterday Sunday May 3rd. At the time of these pictures he was weighing in at 1075 grams (birth weight 845 grams). Today (Monday) he is weighing in at 1101 grams (so he is that much fatter). This week has been full of ups and downs. Last night he was given another blood transfusion and is alot happier baby this morning. He has been having small (not small to Steinar and I) issues which we have learned is part of the joy of being the parents of a baby in NICU.

It is amazing to see how much he is changing and how much healthier he looks with some meat on his little bones. On May 10th he will be one month old. Time flies when you are in a constant state of being tired (and he's not even home yet). I must say I have a new appreciation for mothers and I finally understand why my sister Anna gets so excited when she is able to get a little sleep for an hour.

My only question is "Mom, how did you manage four and still stay sane?"

Today Sebastian is 3 weeks old

I have not yet had my visit with my son as I am meeting Steinar at the hospital this afternoon. Today he is 3 weeks old and is weighing in at 1056 grams. Over 2 pounds. Another milestone passed. Pictures will be posted when I get home.

April 30th (Thursday) We get visitors

Today Tracy, Ilona and Aria come to the hospital to visit. I have not seen the Reece family for ages and although I am exhausted it is one of the best surprises yet. I am happy to have Sebastian meet some of the most important people in our lives and I enjoy the visit. We are only able to have one visitor at a time but they are willing to make an exception. Unfortunately due to a recent flu outbreak they have now restricted children from entering the NICU. They are talking about the possibility of changing the policy to parents only if this outbreak gets any worse.

The visit is great (not long enough) and I am thrilled that they have come to see us. Thanks for taking the time to come to the hospital.

Various pictures of my first day holding my beautiful boy

KANGAROO CARE - A way to hold your diapered baby against your bare chest, skin-to-skin, inside your shirt, or covered by a blanket. This is like a baby kangaroo in his mothers pouch.

April 29th 2009 - One of my finest moments (putting his size into perspective)

I arrived at the hospital today and was hoping to change Sebastian's diaper and do his temperature. This is something I have been doing for the last few days and I love to be able to help care for my son.

Bev the nurse caring for Sebastian asked me if I wanted to hold him today. Up until this point I have not been able to do this. Immediately I was in tears as it is very emotional after almost three weeks to get to do more then just hand hug your baby through the islolet.

I changed into a gown and prepared to finally hold Sebastian. It takes two nurses and about 15 minutes to organize Sebastian's breathing tubes and everything else he is hooked up to in order to disconnect and reconnect him quickly. He is placed on my chest and takes very little time to settle in comfortably between my very ample chest. Because I can't see his beautiful face they give me a mirror so that I can hold it up to observe him as he lies peacefully on his mommy.
It was an amazing moment as you finally have that connection to your child that you have been denied for so long.
Bev tells me that because he can smell me, hear my heartbeat and my breast milk smells like amniotic fluid he is in a very happy place. I don't think he can be as happy as I am at this moment.
I hold him for two hours and after holding him I go to pump for milk. My output doubles after holding my son. The human body is an amazing thing.

I know if I am able to hold him my visits are more complete.

This is a moment I will never forget.

Gaining weight over the past few weeks

These pictures were taken sometime around April 22nd ish. I try to take pictures on every visit if it will not disturb him. At this point his weight is over his birth weight of 845 grams. It has taken two week to get to this point so we have passed another milestone. The green soother in his mouth keeps him calm and strengths his muscles to prepare him for breast feeding.

For feedings Sebastian was initially getting his food admitted to him fairly quickly (over a five minute period). This did not work as most of his food would sit in his little tummy. They have since put him on a slow feed that is administered over a one hour period (similar to an IV). He is now in a happy place and is tolerating his feedings much better.