What a place… RONALD MACDONALD HOUSE in HAMILTON

I promised I would so I will… While in Hamilton awaiting my baby’s discharge from the McMaster NICU, we stayed at the Ronald MacDonald House for $12 a night and man it was AMAZING!

First of all, the service and professionalism of the staff was stupendous. We were greeted late at night with a professional, kind, caring lady (Arlene) and we were given a great tour of the place. It looked and felt like a five star resort- incredible. As if it was not enough that we had a nice bed to sleep in and a comfortable place to stay so we can be with our sick baby in the NICU, they also had a chef that cooked us delicious dinners. Between the multiple amenities and cozy surroundings, we felt like celebrities. I would like to share some photos with you.

20130924_084013_resized  Well-kept hallways

20130924_084022_resized Beautiful décor

20130924_084045_resized Spacious

20130924_084107_resized 20130924_084115_resized Movie Room for families and siblings of NICU Babies

20130924_084201_resized Piano in the sitting area

20130924_084218_resized  Gorgeous furniture

Children's room Children’s Play Room (1 of 4 different areas for children)

Dining Room Sunny, gorgeous dining room where they provided a great breakfast daily

library  Library (1 of 2)

park  Outdoor playground for children

Reading Room 2 Fireplace and a cozy place to sit and read

Reception  Reception area with a waterfall

There is also a “secret” room for kids that ends with a magical place filled with new toys and they get to choose whatever they want. There is a room with a pool table and other games for adults. There is also a full out MOVIE THEATRE. There is a magnificent shared kitchen where families who are staying there for long can cook and store their food in the many refrigerators. There is also a laundry room that is clean and functional as well as a mother’s pumping room with a TV and a hospital grade pump. I was not able to take pictures of all the different spaces, but you get the idea!

The place is staffed with volunteers and sponsored in part by the Government of Canada, Province of Ontario and City of Hamilton. I am so impressed with the facilities and I wanted to give them a huge kudos in my blog for being there for the families of sick children. No one can imagine how difficult it is when your newborn baby is fighting for their life and their health. Each day is filled with mixed emotions from confusion, despair, fear, tension, anxiety, depression and insistent gloom. The last thing you want to worry about as a parent of a child in the NICU is where to sleep or eat. To be honest, if they were not there, I would not be eating or sleeping.

Thank you to the people of Ronald MacDonald House in Hamilton who gave us the luxury of not having to worry about our own health and well-being while we take care of our newborn baby girl. I was moved to tears by their kindness and generosity. They even gifted us with a beautiful quilt for our newborn.

I owe them so much and I would recommend them to anyone who has a similar experience.

Their website is: http://www.rmhhamilton.ca/

Here are some ways to donate and give back: https://secure.e2rm.com/registrant/tribute.aspx?eventid=57066&langpref=en-CA&referrer=http%3a%2f%2fwww.rmhhamilton.ca%2f

 

Until Next Time,

SMartignani

 

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Jelly Bean’s Journey

Jelly Bean’s Journey. Based on a true story…

Jelly Bean’s Journey

Elise

It is time for me to narrate the journey we took as we welcomed Jelly Bean a.k.a Elise to our world and our family. This is no light reading and you may need to grab a cup of tea or coffee before you continue reading this lengthy and detailed blog entry. Be forewarned, this may incite some strong emotions in you.

I started blogging so other moms can relate, react, and generally learn from my experiences. I read other mommy blogs as well so I can learn from them too.

A Brief History:

In my first experience of becoming a mommy, I was disappointed and sad that my FIRST infant was swiftly snatched away from me to the NICU where she had to remain for 5 days in order to gain weight and be released back to us. I had severe preeclampsia in my last pregnancy and I gained an incredible amount of weight. I was induced for two days before being c-sectioned and after all the pain and misery, I was distraught with post-partum depression and the void that my newborn left in my room as she was rushed to the ICU. I was unable to announce her birth to our family or nurse her for two days. I was unable to hold her or have my husband join the other fathers that were walking the hallways to put their babies to sleep. 5 days later she came home and all the pain and agony was washed away by the joy and the hope she exudes everyday until now… as a gorgeous toddler.

Elise’s Journey:

There is much I want to cover in this piece but I will spare you the minute details for fear that you will think me incomprehensibly traumatized. I recall every second and every emotion as a mother but I will try to narrate as an observer so that you can get a clean view from the outside.

On September 19th, we dropped our little toddler to daycare early and checked in at the hospital. After the nurses pierced my veins with the IV and prepped me (which means asked me to undress and wear the lovely, couture blue hospital gown that is incessantly opens in the back). I was on stand-by for a 10 o’clock C-section but they got me in early. The anticipation was mounting because once again we decided to not know the gender and I knew that this pregnancy I did not have high-blood pressure and that the baby was at least 6 lbs. Which boded really well for my hope and dream to have the baby carried out  by my husband back to our room so that everything can be ‘normal’ and I can be given a better opportunity to try and breast feed my newborn.

After a nervous and somewhat brief pain in the back from the spinal, I was laying on the table when my husband came in wearing the blue scrubs given to him by the nurses. He was sterilized and amped to meet our new baby too. I said a prayer in my heart that all goes well and just lay there asking my husband questions and conversing casually while 6 or 7 people got to work at opening me up and extracting my organs and the small, wild child that was rocking my insides for the past 9 months. I cannot describe the deep sense of pride that I felt giving my husband our second child or the amount of joy at being able to withstand all the pain and agony of pregnancy leading up to that pivotal point in our life.

I was convinced that this time, this baby and this pregnancy were different. Everything will turn out perfect and yet deep in my heart, in the black depths of my soul, I hoarded a secret dread that something was going to go extremely wrong. This feeling of foreboding was a constant thorn in my side and it manifested itself in my dreams and waking hours. I experienced several small anxiety attacks which I brushed off as normal hormonal imbalances and standard pre-delivery jitters.

Elise was announced at 10:17 am and scored a 9 on the Apgar scale. She was feisty and the nurses even called her a drama queen which made me laugh. Everyone commented on her extremely long fingers and toes. She was 6 lbs. 5 oz. at birth and I couldn’t even wish for anything more. I insisted that my husband go get her but they were busy cleaning her and readying her. I was feeling the same sense of anxiety as before but this time it was overwhelming. I was nauseated by it which led me to be occupied with my constant need to be sick that I didn’t hear the first time one of the nurses said “She is grunting”. It didn’t register. My husband was given our daughter who equally mesmerized him as our firstborn and I was able to see the grouchy little wrinkled face of my darling little angel. My C-section was just about to wrap up and we were minutes away from the scene I played over and over in my mind… I will be wheeled out to the recovery room with my husband holding my baby at my side as he takes her to show the grandparents waiting anxiously in the room.

Then it happened again… she grunted.

My husband called the nurse over to confirm the noise being expelled from my daughter’s chest to which she immediately reacted by carrying Elise to the NICU where, I was told, she will be kept under observation for one hour to assess her breathing.

Not again.

But one hour, I can deal with that. Fine.

I was in the recovery room where I was willing myself not to give into the powerful urge to sleep. I awaited my husband’s sporadic visits that would relay to me any tidbit or update about our new baby. He kept saying that they are just observing her breathing. One hour later, I was moved to my room and he came in and told me that it can take up to 6 hours.

5 more hours until I can smell her, hold her to my breast or whisper to her how amazed I am at her gift to me- making me her mommy.

I was unable to get up to visit her so I relied heavily on my husband to share every detail. I fell asleep tormented that I was unable to hold her and awoke to the news… she will not be leaving the NICU for at least 24 hours. Elise had fluid in her lungs that was prohibiting her from taking deep breaths and she needed the oxygen they were providing her. I was crushed, Patience and prayers were all I had left and the first was exhausted by the mistakes made while the latter was weakened by my debilitating recognition of my fears being actualized.

Please read the next part with an understanding that I am a mother who needs to vent and warn other moms of what can be. I write this free from malice. I simply state what I experienced,

A Tough Journey:

I visited my baby as soon as I regained some form of feeling in my legs. It was the only highlight to the searing pain I felt in my abdomen as a result of the foot long cut made on me hours earlier. I asked my husband to haul me into a wheel chair and take me to my baby. I needed to be with her and see her. It was all a recurring theme from my first delivery and I was not taking no for an answer. He complied and I was wheeled to her little cot situated in the back of the dark, sterile and sombre Neonatal Intensive Care Unit. She had many tubes attached to her with two different monitors and several other ‘leads’ that measure her heart beat and her breathing. She was taking very shallow, quick breaths and seemed unable to catch her breath even with the CPAP (Oxygen tube) that was attached to her face. The mask on her nose seemed too small and did not sit right on her tiny little nose. It often crept down to suck in the top lip and at times I wondered what this machine was designed to do at all, it seemed quite ineffective. I was informed that she may have swallowed Meconium which is the yukky stuff in my belly. The doctor in charge put her on antibiotics because he thinks it is an infection. I was told that sometimes it takes up to 72 hours for the breathing issues to resolve on their own (which was incorrect because I learned later that something should have been done after 8 hours). I was repeatedly told that they are waiting on her, a day old baby, to resolve her own breathing issues. Levity was attempted through the joke that boys usually take longer to resolve this particular issue and that she was behaving like a boy. I kept hearing the nurses joke with her that she needs to stop “misbehaving” and start “breathing properly”. I was insulted and incredibly enraged by these words and uttered whispers to my newborn.

I patiently waited to see if my baby will “resolve” her own breathing issues but deep in my heart I knew that she would not. Something needed to be done but what? I am not a doctor nor do I have any information at all about what these things mean.

That was Thursday. Friday was more of the same bad news. She was still not breathing or “behaving”. She was still on the CPAP and she was being given glucose through her IV to nourish her. I was asked to pump so that they can dip a Q-tip into the colostrum that I pumped and wet her lips with it. I was still unable to hold her. Friday night I was at her bedside pumping with my mother-in-law when Elise stopped breathing for the first time. The nurse said it was because she was pushing hard to have a bowel movement. She notified the pediatrician on duty and alerted us that if this happens again, the doctor will come see her. They were trying to take her blood. I left at midnight and demanded that the nurse awaken me if ANYTHING happens. I wanted to be there if she decides to stop breathing again.

At 2 am, I opened my eyes and found Elise’s nurse in my room. She told me that she “desatted” again and that the doctor came in to see her. I took my pain killers and anxiously waited until their effect can somewhat dull the extreme pain in my abdomen. I rolled out of my bed and painfully walked over to my wheel-chair. They had placed me in the furthest room away from the NICU so I was to half roll myself and half walk towards my goal while heavily leaning on the chair. No one offered to help me, no one thought to move my room so I can be closer to my baby who just stopped breathing TWICE and needed me by her bedside.

I finally arrived at my destination and asked, politely, to see the doctor. I was talking to my daughter’s attending nurse but the nurse sitting behind her playing Soduko at the computer quickly replied without looking at me and said “She is busy in the Emerg”. Apparently my daughter’s inability to continue breathing was not an emergency and I had to wait. I informed them that I would wait but the nurse clearly told me that she will only page her if anything else happens. I WAS SUPPOSED TO WAIT FOR MY DAUGHTER TO STOP BREATHING AGAIN TO SEE THE DOCTOR!

What?!

I stayed by her bedside until 5 am. She was fine. Labouring to breathe but all vitals were ok and still she was taking shallow breaths. I was completely and utterly exhausted and finally gave up on seeing the doctor. So I informed the nurse that I will make the trek back to my room but if anything happens yet again, I want to be there BEFORE anything is done.

Funny enough, I was speaking to my husband the night Elise was born and he was not happy with the progress or lack thereof that was taking place with her in that NICU. He even told me that he is giving this specific hospital until Sunday then he will be requesting that Elise gets moved to a different facility. This was really frustrating him and it struck a deep fear within me. I was unable to shake the feeling of pure and utter mistrust in their care for the remainder of that fateful night. This goes to show you that you MUST FOLLOW YOUR PATERNAL/MATERNAL GUT INSTINCTS because he was right!!

At 5:45 am, my daughter stopped breathing for the third time. I rushed to the NICU and waited for 45 minutes while the doctor finished consulting with Sick Kids on the phone. She finally came to speak with me and inform me that my baby girl was simply tired of breathing. What a profound notion… and I say that sarcastically.

I was incensed and I told her that I knew this would happen and I don’t even hold a medical degree. I asked her what the next steps were and she informed that they would have to intubate her. I had already did some research on Google (it was all I can do at that time of night prior to this conversation) and attempted to ask some informed questions like “Will you intubate her nasally or orally?”, “What are the risks?”, “Will you sedate her?”, “Have you done this before?”.

I felt no confidence in their ability to intubate her successfully but what choice did I have. I pulled a chair and sat about 12 feet away from my baby’s tiny sized cot that was now surrounded with the head nurse of the NICU who was cracking some jokes, the Respiratory Therapist (who was chewing gum, open-mouthed which I think is not sterile nor code compliant), the doctor who was too busy in Emerg to see me the first two times and the attending nurse who informed that swallowing meconium was a fact of life and everything will be fine.

15 minutes into the procedure I was politely asked to wait outside until they were done. I called my husband and asked him to make arrangements for our toddler and come to the hospital right away. I make this next statement with all the firm belief I possessed at the time… I actually thought that our daughter was going to die.

He arrived and joined me in waiting for the nurses to come out and tell us what is happening with the baby. I saw them changing shifts and finally saw the attending nurse leaving to go home. She came over and asked if anyone came to get us and talk to us yet (she was supposed to do that right after the procedure) and we replied “No”. So she told us that the procedure was complete and to go in.

We did. Our daughter was in a deep sedated sleep. I asked how it went and they said it was done. Sick Kids were on the way and they were going to decide what to do next. A respiratory therapist and a nurse practitioner show up with an elaborate 300 lbs. piece of equipment attached to an Isolette that is clearly designed for transporting sick babies. I am told that she needs a higher level of care and that the Sick Kids coordinator is deciding on the hospital that she will be transferred to. Sick Kids and Mount Sinai are too busy and they don’t have beds. She may be sent out of region. Maybe even Kingston. Ottawa or London, Ontario. I go back to my room because they will need at least 45 minutes to find out.

I only slept one hour that night so I break down. I cry like the world is coming to an end. I was experiencing the most gut wrenching moments ever which will haunt me for a long time. My husband tells me to try and relax but I am devastated.

I recall the my first experience in the NICU and the mom who had gestational diabetes and had to have her baby transferred to Sick Kids. I recalled the empathy I felt for her. I cried just as hard as she did even though it was not my baby. Now I was that mom.

We are informed that she is being transferred by ambulance to McMaster Children’s hospital where she will be receiving level 3 care. I get discharged early and head home to repack my bag and quickly rest before we head down to Hamilton, Ontario for as long as needed until we can bring our baby girl home.

We arrive at 6 pm on Friday night and we are informed that many tests have already been done on Elise. The NICU is leagues above and beyond the first one. The level of care, professionalism and atmosphere spoke to me instantly. I felt like the nurses were proficient and competent. Every half hour, a nurse, respiratory therapist or doctor would approach us and give us updates. They kept us informed and helped us secure a room in the Ronald MacDonald House across the street for $12 a night (my next blog will illustrate how amazing THAT experience was- they need their own shout out for being awesome to us).

We return to the hospital and they ask me to pump because they have attached a feeding tube to my baby girl and she needs my milk. They give me the entire Medela pumping kit and a sterilization bag (at no cost, where as the previous hospital charged us). They were consistently positive and confident that Elise will be fine very soon. THEY FINALLY LET ME HOLD HER after 5 days, I was smelling her hair and feeling her against my skin. I was in awe of her little body next to mine as her breath fanned my neck and I felt her little tiny heart beat moving her chest up and down. It is indescribable how the wait crystallized that moment and made it a million times more special.

I can’t describe the tumultuous roller-coaster of emotions I have experienced up to that moment when I finally felt the sudden release of worry that I harboured in the depths of my heart. I just knew that all will be well. And from that moment on… everything changed.

Within mere days, Elise was improving. Her breathing was even. They extubated her on Sunday morning. She was breathing with very little help from the CPAP machine. I was informed, indirectly, that it took them 4 times to intubate her and after all this, they used the wrong size tube which the RT referred to as “trying to breathe through a straw”.

I decided at the time that I need to focus on the incredible journey that my child was making. I was going to keep my mind on the amazing health care that Elise was getting and her obvious fighting spirit.

I was blessed with calls, texts and visits from priests, friends, family and co-workers. Many people needed constant updates which kept me busy and increased my cell phone bill considerably. I was starting to feel a tentative dependency on the NICU and the positive nurses who lived up to their job descriptions and “nursed” my baby girl back to health. I was told on Tuesday night that we need to check out of the Ronald Macdonald house because they would put us in a courtesy room for parents and release Elise to us for the night so we can call on them if anything happens.

It was a fantastic night. I held her all night. I let her sleep the entire night on my chest. Matching my breathing to hers. I was too elated to sleep and I was never happier to lose so much sleep at night. Every time she woke up, I was awake with her. I would smile at the little noises she would make and I found every little movement she made impossibly sweet. I missed my toddler so much and I was so anxious to bring Elise home and be with both my girls.

We were discharged with Elise on Wednesday, September 25th and we rushed home to pick up our firstborn from daycare.

We were home.

We were thankful.

We were finally a complete family all in the same space, together.

Hold your loved ones closer. Tell them you love them. Hug them and let them know that they alter your life. I can’t tell you how much more I appreciate my girls and husband since this bitter-sweet experience.

I will cover how my toddler reacted to her baby sister in another blog. For now I leave you with one final thought…

You are never given any experience you cannot handle. Raise your chin up from the misery and look around you. You are surrounded with people who love you and care for you and only through the hard times will you see true friendships shine. I am so grateful for those people in my life who asked, who cared and who were in constant contact offering words of wisdom, comfort and reassurances. Thank you for your prayers and for your love. We felt it from Hamilton and we are ever grateful.

SMartignani

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