Doctor's Visit

10lb 6oz.   Up over a pound a week since the last visit.  She also grew 4cm.  WOOHOO!!!

She is Home - Hooray!!!

Thanks for holding your breath with us.  We finally made it home Friday night.  Overall things have been going well.

Feeding is getting there.  Stressful at points.  Sleeping is at a minimum and cuddles are at a MAX.

During our first night home Otis was frustrated with all the crying.  About five in the morning he said to me.  "Mommy babies are hard to take care of, huh?"

Otis is over the moon with his baby sister.  He will tell anyone who will listen that she is home.

Marlo is one tiny little drama queen.  She likes to be swaddled as tight as can be.  Thanks Greg and Heather for leaving those amazing purple blankets here they have been a life saver.  She also likes to have her bum pat to settle her down.  At the first hint of a diaper change she started to lose her mind.  She sounds like a little squealing piglet when she really gets going.  Most of her cloths are to big and fall off of her.  As you can tell by the outfit my mom got her to come home from the hospital in up above.

I really enjoyed our Saturday home together.  Unfortunately Dave had to go to work but we got through it without him.  Otis passed out on the living room floor in the afternoon after being woken up many times through out the night.  We spent the evening on the couch relaxing.  It was the first time in over five weeks I did not leave the house.

Tomorrow will be my last visit from my the home nurse.  My wounds will be closed.  I am so thankful for how accommodating they were with my schedule and came at all different times of the day based on my needs.

I can finally say Marlo's birth/hospital Adventure is over. Marlo spent thirty six days in the hospital and I spent eight days in and Thirty one house visits.

I want to send a special thanks out to my sister Miranda who is now in New Zealand.  She Set up a Facebook fund to help us with our expenses during this time.  We will miss you ZiZi Miranda.  I Look forward to our Skype dates.  I also want to thank everyone who gracously gave us their hard earned money to us in help us out through this time it is much appreciated.  Thank you and we love you all.

Days 32 to 35 - Surprise

Monday morning Dave and I arrived in Hamilton to find out we will be moving back to Grand River Hospital in Kitchener.  We just needed to wait for a bed.  Marlo would also be taken off the TPN(nutrients) as she is eating enough milk now.  They will still keep the central line open with a saline drip until they are sure we no longer need it.

Tuesday morning I called down to see if there was a bed yet.  I was told not to plan on her moving back to Kitchener that day.  They have not heard about a bed opening yet.   Once I got to McMaster they let me know a bed opened up and we will be going back some time during the day.

We left McMaster by 4:30pm and were on the road.  Traffic was great back in Kitchener by 5:30pm.  Marlo was famished by the time I got up to the NICU.  She was in her own room and the nurse had a gown on.  Turns out there was a baby in McMaster that had some bacteria on her floor.  She needs to be put in isolation until they can test for the bacteria.  She was not happy being swabbed.  All she wanted to do was eat.  I put on my gown and she fed great.  I went back in and fed her at midnight and 6am.

When I got back in for the noon feed her doctor was there.  I now have permission to feed her all the time.  We now started to discuss the exit plan.  He mentioned taking her central line out on Friday.  I pipped in that I wanted to go home on Friday.  He then agreed to take the central line out on Thursday (today).  they need to watch the location for 24hrs.  I then asked what other goals do we have to reach before we can get out of here.  The doctor sat silent for about thirty seconds and the said nothing really.  You can plan to go home for Friday.

DID YOU READ THAT.  We get to go home FRIDAY!!!!!! That is tomorrow.  Can everyone hold their breath with us.

I slept at the hospital last night to feed through out the night.  We have had seven successful feeds in a row.  The most we have attempted to date was three.  She even put some weight on last night.  I will be spending most of day and night there.  Today will be the first time in a really long time that she will be free of all wires and tubes.  She will have to wear a monitor while she is sleeping but when I hold her there will be room to move.

We will be coming home Friday evening turning off all the phones and locking all the doors for the weekend.  It is going to be nice to drink in the true first moments our new life as a Family of four.

Days 28 thru 31 - OH Happy Days

Wow we have been living this life for four weeks now.  Marlo will be one month old tomorrow.  Are you all wondering if she has pooed yet?  The answer is yes of course.  She had her first little poo Thursday evening and has been "stooling" as they say ever since.  As of this evening the results of the poo test have not come back.  However the nurse today has said her poos look like the poos of a breastfeeding baby.  There is no blood or mucus.  YAY!!!!!

I drove to Hamilton on Friday for the first time.  I only had to half pump before feeding so she could get more milk. I have been fully pumping before feeding to regulate the amount of milk she has been getting.   Feeding went well.  I am very happy with her progress.  My first drive to Hamilton went well, After the hospital I went to the church to try and help out.  It was pick up day for Bailey's.  I wasn't much help but it really helps me to do something from my real life.  By the evening I had the chills.  By the time I got home I was shivering to the bone.  I got in bed with a hot water bottle and tried to sleep.  Turns out I had mastitis and man did I hurt.  I woke up and pumped every two hours to help clear the blocked milk duct that was causing me pain.  My fever broke through out the night.  I spent most of Saturday in bed resting until we went to the hospital to see little miss.

Saturday I was told I would not have to half pump any longer.  I still could only feed for fifteen minutes but she could have as much as she could during that time.  She fed well, I have no idea how much she actually got though.

Otis got to see his little sister for the first time in over a week.  He proclaimed Thursday evening that he really wanted his sister home so he could hold her and cuddle her.  He didn't want her to be in the Hospital anymore.  I told him she was getting better and that she would be coming back to Grand River Hospital soon.  He was happy with this. then we wont have to drive so far to see her.  This way he could visit her more.

Today I spent most of the day with Marlo.  We were able to feed together three times.  We started each feed by weighing her so we could see how much milk she was getting.  Her tube feeding is up to 35ml.  Her first feed with me she got 26ml based on her weight gain.  Although is is not exact it does help gauge progress.  She would have fed more if she was able to feed longer.  She was awake for almost two hours which made her tired for the second feed.  She got 18 ml the second feed.  She was ready to feed a bit earlier for the next feed being she didn't get her fill the last time around.  The six o'clock feed was awesome.  She was gulping away like crazy she would have to slow down and catch her breath.  The nurse was impressed she was able to handle the speed of the milk flow.  She only fed for ten minutes this time and was done.  Her weight gain said she had drank 34ml.  1 ml less then the feed she would have got from tube feeding.   The nurse said that this is a really good sign for home life.  When we are not on a hospital schedule and feeding whenever we need to.  ANOTHER YAY!!!!!

Did I just here the mention of HOME.  I think we are getting closer. 

Day 26 & 27 - Waiting for Poo

Marlo has been eating since Monday and has not pooped.  This is not a big deal as she is not getting a lot of food.  I find it funny that Marlo is fitting right into this family being we seem to always be talking about poo.  I was thinking I need to get her these little guys for her isolette.

Pee & Poo

While at the Pee & Poo Web sight I  did purchase This little Onesie .  This is the first thing I have bought her since she has been born.

Feeding has been going well the last two days.  She got 7ml from me this morning.  I stopped her from feeding as I was worried she may get to much.  I didn't realize that the nurse would just pull it out through her tube to see what she got.  I could have kept on feeding her.  Tomorrow I am just going to let her go and then let them decide how much they want to leave in he stomach for digestion.

Currently she is receiving 15mls every three hours for her feed.  They have been increaseing her feed by 3ml every 12 hours.  Once she poops they can have it tested.  If all is well they can increase the food at a quicker pace.

The nurses know that I do not want her to receive any milk by bottle.  They were O.K with this and will continue to feed her by tube until we get her back here where I will be more available to feed her.   My hope is to have her moved back in Kitchener by Friday.  I will accept Monday if I have to.

Some of our family members have set Thanks Giving as the date she will be home by.  I am starting to think they might be right.  I have had a tough two days.  It is getting really hard to leave her there every day.  She is becoming way more aware and looks directly at you now.   Please let this time fly by in the same whirlwind we have been living in up until now.  If it slows down it will be even that much harder to get through this.

Day 24 - 25 - Good Days

Sunday was a day of the same.  My friend Lisa picked me up and brought me to see Little Miss Marlo.   She was doing well and was ready for snuggles.  There was a little pink swing beside her bed.  She got to spend one of her naps swinging away.   The nurse said she really enjoyed the swing.  Good thing we have one waiting here for her when she gets to come home.  I had the pleasure of changing a diaper.  It has been a couple of weeks since I changed one.  I think I have only changed her diaper three maybe four times.  Marlo had her first poop since last Friday, eight days ago.  There was no blood. YAY!!!!

Today we set out to spend a good amount of time at the Hospital.  Dave would bring me in snuggle with Marlo and head home in time to pick up Otis for school.  Nona and Miranda would pick me up on their way through.

When we got to her bed side she was wailing.  Her monitor was ringing as her heart rate was a hundred beats higher then her resting rate.  She was so worked up.  I tried to settle her in her isolette,  she would not have it.  I finally broke her out of her plastic cage and still could not get her to calm down.  It took almost five minutes.  We had arrived right during rounds which meant we finally got to meet her doctor.  She got a new doctor today.  It seems the pediatricians work on two week cycles.  Her new doctor let me recap her history rather then read her file.  He would only refer to the nurse practitioner if I could not answer the Medical questions.  It was nice to be acknowledged and listened to for the first time since we have been there.

Marlo was still wailing away.  He made the call that we would start to feed her today. The nurse questioned starting to feed before the end for the full ten days.  The doctor took one look at the crying baby and said feed her she is hungry.  He had me pump first so Marlo would not get to much food right away.    The Doctor paused and asked me by name if I had any more questions or concerns before he left.  Ahhhh I almost feel at peace after our encounter.

She latched immediately and went to town.  After close to ten minutes I burped her and she snuggled with Daddy.  She seemed very satisfied and grabbed a hold of Dave's beard.  If you are wondering why Dave still has not shaved his pregnancy beard.  The answer is he is waiting for her to come home before the burly man look goes.

When we left today she was just about to get her next feed of 6ml by tube.  She will not be put on a bottle.  The doctor made a point of letting the nurses know she should not get formula and keep her on breast milk.

Our next step is to wait for the poop.  He hopes to have her up to 60% of her feed by Friday.  I hope this means she will get to come back to Kitchener by then.  If not I will be spending a lot of time in Hamilton coming up.  Only time will tell.

Day 22 & 23 - McMaster to Stay

Miranda and I went to McMaster Friday evening to see Marlo.  She had kept her nurse busy all afternoon.  The nurse finally figured out she really likes to be held and that she also likes to be bundled tightly.  It was a strange feeling arriving to see my daughter and no one there knowing who I was.  The rules to entering the NICU at McMaster are much more intense.  I had to remove my wedding rings and all outside bags are to be put in plastic bags.  You are not to bring any outside things in.  There are very sick babies in her unit.  When you arrive in the unit you need to wash up to your elbows.  There is a step by step process on how you are to do so on the wall.   I felt a little lost.  Luckily there was a father just about to enter that realized Marlo was next to his twins.  Turns out the twins were born in Kitchener two weeks earlier.  I was feeding Marlo the night they were delivered and brought into the Kitchener NICU.  Such a small birthing world.

Yesterday was a good day.  They established her central line.  We are very lucky they were able to get one in.  If they did not have success the would have had to put a cut line in.  A Cut line would have involved a surgeon cutting her thigh to find a vein.  Once the central line was inserted it would have been stitched to the vein.  This type of line would have meant she would be staying in Hamilton until she comes home.

I called McMaster this morning.   They have decided to keep her there for now.  The nurse has said the want to keep her until the establish feeds. They feel it would do her injustice to have her travel back and forth if the blood in the stool returns upon  her starting to get milk again.  They also feel they would be able to get to the correct milk needed quicker.

Currently the plan is to get her up to half feeds and make sure her insides can tolerate it.  Once this is achieved we will be able to get her back in Kitchener to finish getting her to full feedings and hopefully establish breast feeding at the same time.  Feeding could start as early as Monday.  This is the doctors call it will be assessed if the ten day course of antibiotics was enough or if they feel fourteen days are needed.  I brought a frozen batch of my milk to the hospital in preparation for her  feeding to begin.

We just got back from visiting and cuddling her for the afternoon/evening. This is the first night Dave has held her since Wednesday.  We have had to split up and conquer and will continue to do so through out the next while.  Dave returned to work this week and we do have a little boy at home that needs us too.  I plan to drive to Hamilton tomorrow.  I am interested to see how I feel after the drive.  The farthest I have driven so far is to a doctors appointment.  I am feeling much better.  This will be a good test.

Day 21 - Road Trip

I slept in this morning trying to to have the morning pass with out thinking about it.  Marlo was having her central line put in at 10am.  I have my nurse come by early so we could go to the hospital as soon as the coast was clear to do so.

I called the NICU at noon to see how things went and to make sure we could visit her.   Her Doctor got on the line to let me know that they were not successful.  He had just made arrangements to have the transport team to come get Marlo and bring her to McMaster.  She would either come back tonight or first thing in the morning.  

I went to the hospital and cuddled with her until they came to get her.  She was exhausted and slept the whole time.  The transport team came and got her ready to go.  We gave her kisses and sent her on her way.  

I came home pumped and crashed from the sheer exhaustion of the whole event.  I called McMaster this evening to see how thing were going.  She arrived fine,  all of her stats were normal and the trip was uneventful.  I am a bit confused as the nurse there was talking about me bringing milk there. I was under the impression she was coming right back.  The nurse explained that she was getting ex-rayed later this evening and that she would have blood work in the morning.  They were giving her little body a break before the attempted to try getting a line again.  

For now I am taking each step as it comes and not worrying about the next.  I can not think or plan.  I need to live in the moment.  I will be heading down to McMaster tomorrow to check things out for myself and give that little girl some big cuddles.  Tomorrow she is three weeks old.  I would have never imagined this is how the last three weeks of our life would have went.  

Day 17, 18, 19 and 20 - Stable Baby

The last four days have been uneventful on the hospital front.  We are in the sixth day of her ten day treatment.  I love that we are now passed the half way mark.  She is doing well.  It looks like we will be starting to feed her either Sunday or Monday.  This is going to be a very slow process.  little increments at a time.  There will be no rushing the process this time.  She can get rather feisty through out the day and shows signs of wanting to eat.  She had a bath yesterday and almost drank the bath water.

For the most part the only news is if the IV held or not.  We were lucky enough for the first IV in her head to last almost 48 hours.  The last two only lasted 12 hours each.  I signed the consent form this morning for them to put a central line in tomorrow morning.  If all goes well it will last and she will not need to be pricked and poked several times a day. On average a central line lasts four to six weeks so we should be fine.

I am feeling good these days.  I have stopped taking my pills for pain about three days ago and am doing well.  I drove Otis to school today  all by myself.  It has been almost three weeks since I drove.   I made dinner on Monday by myself to.  I am starting to feel like a capable person again.

Days 15 & 16 - Positive Progress

Saturday was a pretty non eventful day.  It was the second day of the ten day treatment.  Marlo kept the nurses hoping through out the night into Saturday morning.  Her little belly had realized it was empty and wanted to eat.  She spent a far bit of the night in the arms of the nurse walking around the NICU.

It feels like we are starting to find our groove here at home.  My mom has been an amazing help around here.  while we were out Saturday she managed to make me twenty six jars of fresh grape juice for us to drink during the winter.

Saturday evening we went for our nightly visit only to find out we would not get to have our cuddles.  Marlo had just had a new IV put in and had just settled down after having a upsetting evening.

Sunday morning was a shock to the system.  Marlo's IV had been moved to her head.  There was a little ziploc bag taped to her incubator with some hair and a note.  It made me happy and sad all at the same time.  Happy they kept it.  Sad her hair needed to be cut to have a needle stuck in her head.  Her Doctor was on call,  he stopped by to let me know the newest ex-ray looked cleaner and we would continue to rest her insides of food for the next eight days.  We will then reintroduce my milk back to her gradually when the time comes.  He said this is positive progress and keep the course.

I was told by my nurse it should only be a week or so longer before my wounds have healed.  Today was the first day i felt like I could stand up straight and not stay bent over from the pain.  I feel the end is near I can't believe it.

Marlo's Birth Adventure - Update Day 14

Week #3 - So The Plot Thickens

Friday we went to the hospital to sign Marlo's release form so she could be transferred to McMaster.  To our surprise she was being hooked up to an IV.  Turns our there still wasn't a bed available at McMaster.  Her doctor here decided to make the next move.  It could be a day or two until one became available and it would not be in the NICU, it would be in the pediatrics department.

Through out the night Marlo was not overly interested in eating and threw up twice.  The Doctor had decided to start treating Marlo for Necrotising Entrocolitis (NEC).  He said there was a 50/50 chance that this would be the course of action they took at McMaster.  He and his team of Doctors are not 100% sure this is what she has.  But, they are not sure that it is Milk colitis anymore as the bleeding has become more persistent as apposed to getting better.  The E-ray from Thursday had raised some questions amungst the team reviewing it.  They ex-rayed her again Friday morning and the same area in her bowel raised question.   Most babies that have NEC become much sicker quicker and have more traceable symtoms.  Marlo has not followed the regular path of a NEC baby, however if she doe have it they will be ahead of the curve and hopefully get her better quicker.

The treatment for NEC is 10 days long and rather intensive.

• stopping feedings
• nasogastric drainage (inserting a tube through the nasal passages down to the stomach to remove air and fluid from the stomach and intestine)
• intravenous (IV) fluids for fluid replacement and nutrition
• antibiotics for infection
• frequent examinations and X-rays of the abdomen

The Doctor did tell us that NEC could make a baby much sicker then Marlo was and if it did get to that point she would be transferred to the next level up NICU.  She would be moved to which ever location had a bed available, either London, Hamilton or Toronto.  But for not they would continue here in Kitchener.  Thank goodness for that. 

It felt like we were taken such a step backwards.  She would have all the wires and tubes as she did before.  The IV may not work for all ten days and she may need a central line.  she will need so many needles and testing everyday.  God I hope this works, how much more can a little body take.  Dave and I left the hospital Friday morning very shaken up and upset.   We also left not knowing much about NEC other then it sounded horrible and was much worse then straight up milk colitis. 

Now that we had spent a bit of time reading about the disease, we feel much less fearful and more optimistic overall.  This is going to be a long treatment but will hopefully yield positive results in the end.  Meaning we may even get to bring our baby home.  


If you are interested in reading more about it here is the Link - Necrotising Entrocolitis