Saturday, October 30, 2010

Halloween crafts

Noah is really into Halloween this year. They must have been talking about it a lot at daycare this week. He has asked to get pumpkins, put faces on the pumpkins and watch his favourite Toopy and Binoo Halloween episodes repeatedly. Of course, this doesn't mean he will willingly put on his fireman costume (he keeps telling me he is going to be batman for Halloween, but I am not about to buy a second costume, when he doesn't even know who batman is!). In fact, I anticipate a big fuss and a lot of tears over getting him into the costume.

To help keep the spirit alive, I have decided that we should bake some sugar cookies and decorate them in halloween themed items. However, when I looked at my cookie cutters, all I have are Christmas ones. So Keith and I came up with the idea of taking the gingerbread man cutter and making zombies and monsters.

Now, anyone who knows me, knows I don't have a creative bone in my body (aside from the ability to play musical instruments), so I have a feeling this is going to turn into a batch of gingerbread men with splotches of icing and sprinkles on them - but at least he will have fun doing it. I will post photos once we are done...prepare to laugh!

Ah, that turned out to be great fun with Noah! What a great Saturday afternoon project for toddlers. I can't wait until Layla is old enough to participate!

Noah had so much fun decorating the cookies - then eating them immediately after! We ended up not doing zombies and monsters - due to my limited skills and cookie cutters. Instead, I would ask him what each teddy bear or gingerbread cutout was going to be for halloween.  I was very impressed with his suggestions!

Here are the results (By the way, we both feel sick now from the amount of cookies and icing we have consumed!):

Noah getting started

Very serious!

Enjoying the results of his work

A princess and Noah's "blue bear" dressed as a ghost!

Conjoined nurse twins

Noah's bear, "Mrs. Wiggins"

Noah chose to dress this teddy in a green outfit

Brown bear

Noah's other teddy, "blue bear"

A pirate

"Blue bear" dressed as a pumpkin


Mommy's bears/gingerbread men

Noah's teddy bears/gingerbread men (Note: There were more but he ate them!)

Sunday, October 24, 2010

Bedtime Battles

Our current battle with Noah is bedtime. We have always had a consistent bedtime and routine. This has really helped him, and we have never fought over when bedtime is: he knows that after dinner, we wash our hands and face and head upstairs. If we are done dinner early, he plays upstairs. If we are late, he goes right to bath. Brushing his teeth and bath are always at 7-7:15. Right after, we do diaper, PJs, stories, bed.

Since Layla's arrival, our schedule gets a bit more complicated because she is usually ready for bed at 6-6:30, which means that if we are done dinner early, he can't play upstairs because he likes to run around all the rooms playing hide and seek or "sleeping bunnies" (a game that involves Noah and Keith laying on the ground sleeping, until I say "WAKE UP!" and they hop around).

We have tried every combination of activities to figure out what works best, because Noah seems to need that run after dinner to burn off his excess energy (especially on days he isn't at daycare). We have tried having dinner later, giving Layla a fourth nap to keep her up later, having dinner earlier, playing downstairs instead of upstairs. However, the result is always the same: he fights us constantly with every step. He won't brush, he won't floss, he won't get into the tub, he won't put a diaper on, he won't put PJs on, he won't get into bed. This is very frustrating for us because Noah is such a creature of habit, and the one thing Noah has always been good at is bedtime!

We know it is because his routine has been disrupted, but more than that - after reading Alyson Shafer's book, "Honey, I wrecked the kids", I realize that Noah is ready to control more of his bedtime. According to this book, Noah is challenging us with a power struggle. Children don't like to be told to do things, as they would rather be given choice in order to control their outcomes. To test out her theory, we gave it a shot: First we asked Noah where he wanted to read stories (we had been reading them in bed, all cuddled up together, but he had been fighting this) and we now read them on the chair in his room, as per his request.

Another big struggle was getting him into bed after stories. So a few days ago I told Keith that Alyson Shafer would suggest we just turn out the lights and let him choose where he sleeps - even if it is on the floor! The other night we decided to try it. We gave him a kiss, Keith sat down with our iPad, and I turned out the lights. Keith said he stayed out of bed, but after a short time he picked up his teddy bears and head to bed on his own! It worked!!!

Now that I have a bit more faith that Noah is capable of controlling certain aspects of bedtime, I have to figure out how to get him to do the more challenging aspects of bedtime: Teeth and bath. We have tried offering him a tooth brushing while IN the bath or after the bath - that helps a bit, but flossing is a nightmare. Honestly, if he wasn't a cardiac patient, I wouldn't even bother with his flossing right now - it just isn't worth the battle - but I don't want him to get an infection that can impact his heart. So, I actually have no idea how to give him choice in teeth - but I am still reading the book (for the tenth time - I keep coming back to it when we encounter a new challenge).

Bath could happen in the morning, I suppose. However, on days he is at daycare, I have a small window of time to get him out the door between Layla waking up and her first nap - so I don't know that morning bath would work better. I know that he would take the bath more willingly if it happened at another time, though.

Finally, diaper...Why does he refuse to put it on at night? He runs around his room hopping and won't let us put it on. What a battle! We offer him the choice of where to put it on but it doesn't work anymore. So that is another battle we need to fix. I mean, there is no choice - he needs to have it on for bed since he isn't potty what to do? The other day he peed on the floor while we were waiting for him to allow us to do his diaper, but it didn't phase him.

The parenting book is fantastic (and Canadian!) - I highly recommend it to any parent, as it covers all issues from infants to teens. I think it will get a lot of wear and tear! Here is a link to the book for those who are interested!

Finally, here are some photos from our bedtime play (older photos - probably a year ago):
Sock puppet time!

Hide and seek in the curtains

Running from bath

He used to think if he was against the wall, you couldn't see him!

Daddy and Noah, running away to hide from me

Saturday, October 23, 2010

All about Layla

Layla was a surprise pregnancy...the result of two people believing themselves to be infertile! At the time I got pregnant, Noah was 14 months old, I had just returned to work and was finishing up my Master's degree. We always said if we somehow conceived on our own it would be a wonderful blessing. This is how Layla Grace came into our lives.

The day I found out I was pregnant, I had gone to work with a suspicion that I was pregnant. I went to a drug store on the way into work and grabbed a test. Keith and Noah had an appointment at Sick Kids, so I knew they were going to meet me afterwards. I went out to meet them and couldn’t keep it in, “I’m pregnant”. Keith looked as shocked as a human could look! He just stared at me. Part of his shock is largely due to the fact that a few weeks before, we had sat down and had a serious discussion about when to return to the fertility clinic. We were trying to time it around Noah’s age, the end of my Master’s program, finding a new job and saving money before going back onto maternity leave. Life had other plans. 

Layla's pregnancy was very easy and very different from Noah's. Keith and I just knew that it was going to be a healthy pregnancy and it was - short of taking a fall on ice at work one day!

Layla was supposed to be named "Grace Elizabeth" as we had that name picked out for a long time. "Grace" was picked because I liked it, more so than the meaning. "Elizabeth" was after Keith's grandmother. However, one day Keith came home and said that he thought Grace was too common lately and after naming Noah (whose name is in the top 5 names right now), we didn't want to have the same problems we are encountering with Noah at daycare (there are three Noah's in his small class right now!). He met a little girl at Noah's gym class named Layla and said how much he liked the name. Once he was into changing her name, I searched high and low for other names but he hated them all because in his mind, she was his little Layla already. Of course, since choosing this name, I have heard of three new babies named Layla and haven't heard of a single who knows. We chose to use the name Grace as a middle name and for some reason, I can't stop calling her Layla Grace - rather than just Layla. Keith loves to call her L.G. and Noah...well Noah likes to call her "baby".

Layla was born a month before Noah's second birthday. Her birth story is actually quite humourous - many of you have read it already but I will post it here too because I think it was an amusing situation.

So far Layla is very healthy. She is a big baby - off the charts in all respects, but she definitely has a different personality than Noah. She is my "spirited child". She knows what she wants and when she doesn't get it - watch out! She has developed a disturbing deep and husky growl when she is frustrated - it is hilarious to hear. She is a great sleeper but her naps have always been a challenge. Worry about naps consumes so much of my time I am sure it will get it's own blog post.

Layla and Noah are opposites in every way thus far: 
  • Noah ate all day long when he nursed; Layla is in-and-out in 10 min's
  • Noah was quiet; Layla is very vocal
  • We never had to baby proof with Noah - he just was told not to do something and he wouldn't...I have already caught Layla chewing through cords (time to baby proof!)
  • You could leave Noah to amuse himself; If Layla doesn't have constant attention she is furious!
I find it very hard not to compare them. I want them to each be their own person without comparison, but I think it is just natural to compare. Layla is more of a needy baby who, at times, makes me question my desire to have more kids! Yet, she isn't a fussy or colicky baby - she is just very demanding of time and attention. It is because of her spirited nature that she is also one of the most loving and fascinating babies I have ever met (of course, I have a slight bias here). Her smile is so infectious, she can make a whole room smile and stop talking to stare at her (believe me - I have seen this happen at my weekly Weight Watcher meetings). She really is a wonderful baby!

I think the biggest challenge we will encounter raising Layla, is helping her grow up without resentment for Noah's ailments and the attention they inevitably receive: good or bad, attention is attention - and I fear that it may have repercussions on her childhood and her relationship with her brother. I have witnessed this first hand at the bedside, and I have no idea how to avoid it. We try to treat Noah as normally as we can, however on some level we will always baby him a bit, even if we don't try to - when you go through what we did with your child, it is hard not to baby them!

Conversely, we feel that Noah's health issues have given us a unique perspective when it comes to appreciating the children and enjoying every minute of their lives.

Layla is still sleeping in our room - we moved her crib beside my bed when she outgrew the playpen. Thank goodness we have a huge room and can't afford to properly furnish it! So our next job is to get her into her own room. Right now I am working on getting her naps in the crib. Currently we either co-nap, or I nurse her to sleep on our bed and leave her there. I am day 4 into this experiment and so far she is doing ok. Every now and then she stays on our bed, but I am really trying to help her learn to nap in her crib.

Layla has also started solids. She loves them some days, hates them on really depends on her mood. As I said, she is spirited! 

Anyway, here is her shortened birth story (also posted on FB), and I am going to post photos after it of our gorgeous blue eyed girl!

Layla's Birth Story

April 17th, 9pm: Keith and I are watching TV and I keep getting intermittent pains. They were quite uncomfortable, so I tell Keith and go upstairs to have a shower to make them go away. I feel much better after the shower, but when I get downstairs, Keith is clutching the phone. We then proceed to argue about whether or not I am in labour or if I just have gas! He wanted to call his mom to come up because she had a long drive, but I wanted to wait because I really didn’t feel it was labour (I was, after all, a few days early!). We argue all until bedtime, at 10pm. I tell him that he can’t call his mom and if I do in fact go into labour that night, he is not to say, “I told you so”.

10:20pm: We shut out the light, and I get a contraction. To tell if it is a Braxton hicks contraction or not, I decide to get up out of bed and walk it off – as soon as I get up, my water breaks! I run to the bathroom yelling, “Call your mom!”.

I can hear him on the phone with his mom: “It’s go time! Her water broke……Yes…..come now…..Her water broke!.....HER WATER BROKE!” (clearly it took a few tries to get the message across)

My contractions never really kicked in, so I go to bed. I was up every 15 min's with contractions, but they didn't get any stronger or closer together...just more annoying than painful.

April 18th, 6am: I get up with Noah and my mother-in-law is shocked to see us still at the house. My contractions are getting further apart so I call triage, who tell me to call the OB on call (who just happens to be my own OB). She suggests I go to the hospital (but don’t rush there), where she promises she won’t send me home because too much time has passed since my water broke the night before.

8am: We arrive at the hospital. We are the only ones in triage so we are seen immediately. The nurse hooks me up to the fetal monitor and leaves us to our own devices. I nap off and on, since I didn’t sleep well the night before. Finally a doctor comes to see us around 10am (I had missed my own OB who went off-call by 7am). She said they will admit me but I ask her to check me. She didn’t want to, but I insisted – I am 3cm dilated at this point.

10am: Keith and I walk the halls and I try the exercise ball to get labour going, but contractions totally stopped by now. The nurse asks me if I will want an epidural – she anticipated my labour would come on hard and fast with the pitocin because I had a fast labour with Noah. She suggested it might be easier and better to do the epidural before the pitocin – I agree. So we spend the next hour waiting around for the anaesthetist to do the epidural.

11:30: Got the epidural - I felt like such a weakling getting an epidural before I had any real contractions, but with Noah’s birth, the epidural didn’t take, so I knew what labour felt like and I wasn’t eager to feel it again! The doctor assured me many people do it this way and made me feel less stupid for asking for it so early.

I did not like how I felt once I had the epidural. I felt faint and nauseated from being numb. It wasn’t related to my blood pressure, which was fine. It was all in my head – I couldn’t get past how awful it felt to have numb legs and bum. I think because I didn’t relish the relief an epidural can bring when in active labour – I basically got it with no pain at all – so it really felt weird to me.

12:45: Started the oxytocin

13:15: Contractions 4-6 min’s apart, increasing in strength. I didn’t feel a thing so I napped a bit off an on.

15:19: Contractions 2.5 min’s apart. Starting to shiver – likely in transition at this point. The nurse kept increasing my drip because my body would react well initially but then it would seem to get used to the level of drugs and slow down again.

15:30: Increased my pitocin again.

16:15: I had asked the nurse if they could check me because I was shivering but couldn’t feel an urge to push. I had been on the drip for about 3.5 hours and I wasn’t convinced I would feel the need to push. They told me I would but I had convinced them to check me anyway. Lo and behold – I am 10cm! Who knows how long I was 10cm for because I really couldn’t feel a thing. My bum was very numb.

All of a sudden I am VERY nervous. I didn’t feel any pain with the labour and I didn’t have the urge to push so the thought of just pushing with no urge, made me scared. So I begged the doctors and nurse to take their time setting up, so I could calm down a bit. I start shivering big time but this time it is related to my nerves. I did however, have another nap as the doctors tended to another labour (at my request).

17:23: I can feel the contractions enough now to know when to push. I pushed three times with each contraction, despite feeling quite ill with each contraction. After 2 contractions they had to call the doctors because her head was right there. I didn’t really realize how close it was because I didn’t feel a thing!

The nurse called in the resident, fellow and staff into our closet of a room, and I begged them not stretch me to accommodate the head – they all laughed. Then I told the nurse that if I threaten to punch her, not to take it seriously.

I push once and I hear “STOP!”. I stop and ask “WHY? What is going on down there?’. They laughed and said “The head it out!”. I am shocked because I really didn’t feel it! (I should point out that Layla's head remains, to this day, enormous! At 33 weeks, her head was the size of a full-term infant)

Then I push one more time and out she came flying! I had pushed for 9 min’s – most of which was waiting around for contractions or doctors! All in all it was 3 contractions.

Layla Grace was born at 17:32 – 4.75 hours after being induced.

Here are photos of our beautiful Layla Grace:

Layla after birth
24 hours old - going home! 
First family photo! 
10 days old
This photo always make me laugh!
Big brother holding his new sister
1 month
Right from the start, she has clutched a blanket when sleeping

This is how she slept for months!
3.5 months
3.5 months
Another photo that I find hilarious!
4 months
Playing in the leaves with Noah
Modeling her Baby Legs
5 months
5.5 months
Party time in her diaper!
First food
And just like that...she takes a sippy cup. No problem!

Friday, October 22, 2010

All about Noah

As my first post, I wanted to explain a bit about Noah's background, since I will be frequently discussing his health issues. It is my hope that our story will provide insight, hope and knowledge for those going through a similar journey, raising a child with chronic health issues. My next blog, I will go into detail about Layla, who thus far, is healthy (thank goodness!). A fair warning that this will be long - and poor Layla's will be short (but in her defense, she is only 6 months old!)

Keith and I had been married for 16 months before we became pregnant with Noah. It was a bit of a struggle, since I suffer from polycystic ovarian syndrome (PCOS) and thus don't ovulate on my own. We sought out assistance from a fertility clinic and, with the help of Clomid, we were able to conceive Noah on our first round of medication.

Noah's pregnancy was not without its trials and tribulations: at 17 weeks when I was placed on bed rest for a heavy bleed which was the result of a subchorionic hematoma. At the time, we were not sure if we would carry Noah to term. So I was considered to be suffering from a "threatened miscarriage". However, at 22w I was able to go back to work, with limited activity because the bleed had diminished in size. We had many, many ultrasounds as the result of the bleed, fertility treatment and the normal ultrasounds that are scheduled during a pregnancy - but none were able to catch his multiple heart defects. During every ultrasound, being a cardiac nurse, I would ask them to show me his four ventricles - every time I saw them I breathed a sigh of relief. However, I do feel on some level that I knew something was amiss: I would frequently comment to my coworkers, "My biggest fear is that this baby will have a heart defect"; or to Keith, "something doesn't feel right - I don't know what or why...but it doesn't feel right" (after which he would get upset because there was nothing he could do to make me feel better and I had instilled a dose of worry into his day).

When I was overdue by a few days, I was induced for vision disturbances. All they had to do was break my water, and after that I did the rest on my own. After about 6 hours of back labour with a non-functioning epidural, Noah arrived - a healthy size (8lbs 12 oz; 21 inches). His breathing was a bit laboured, but after a nursing session and some kangaroo time, he calmed down. Everything appeared normal.

Before we were discharged, a pediatrician came to see him to check him out before we were able to leave. The doctor had difficulty finding his femoral pulses and commented on it. But then he seemed to find them and all was ok. I did however comment to Keith that it bothered me a bit. Keith also noticed how cold his feet were all the time. The medical team passed it off as immature circulation, which, I suppose could be a fair explanation...just not the only explanation.

At home we did ok - breastfeeding was brutal because of the pain, but he seemed to have normal energy levels and nursed constantly...literally, all day and night long! Being paranoid, I would listen to his heart daily because I knew that if he did have a defect, symptoms would appear around the time the patent ductus arteriosis (PDA) closed. This is the vessel that allows fetal blood to flow between the aorta and pulmonary artery, which closes about a week after birth. I didn't notice it close, but I did comment to the family doctor that I still heard a murmur when it should have been closed. She thought it was merely the PDA remaining open. 

Around 6 days after his birth, Keith sat and watched Noah sleep. He commented that he really seemed to struggle to breathe at night and was visibly concerned. I told him we would watch it and then bring it up to the doctor at our next visit. Over the next few days, Noah's breathing became faster, but it wasn't until my grandmother pointed it out when she was holding him. Once she pointed it out, it was all I could notice. He was breathing over 100 breaths a minute at rest. Normal is about 60! He literally appeared to be panting like a dog. 

I mentioned it to the doctor and to telehealth on the phone. They both brushed it off (likely thinking I was just an anxious first time mom). I turned to Dr. Google, and everything kept coming up as a heart defect of some sort. 

By 10 days after his birth, my mom called me and I was in tears with worry. She said, "If something doesn't feel right, just go to the will feel better for trying". At this point Noah had significant indrawing with each breath and his breathing just seemed to get faster by the day. 

When I worked at the bedside, I worked in pediatric cardiology at the children's hospital in town - and I knew their emergency room would be swamped. So Keith and I decided to return to the hospital I gave birth at, because they had an urgent care clinic with no line up. When we got there we were approached in the waiting room by a nurse who informed us that they don't see infants once they are discharged because the children's hospital was down the road. She looked at me and asked why we came there. I explained our reasoning and she said, "Your son is in respiratory will be seen immediately". It was then that we both realized that he really wasn't well - but with what or why was yet to be determined.

The nurse was right, we were seen very quickly. After an x-ray, Noah was diagnosed with wet lungs, likely from pneumonia after birth. He was started on triple antibiotics and was going to be admitted for 10 days. I burst into tears...this isn't how you are supposed to spend the early days with your baby and 10 days seemed SO long. I asked him to do an echocardiogram to check the heart, just to make me feel better. He said, "We are aware you are a cardiac nurse...when he is on the floor we will get an echo done". That made me feel better. 

As we were waiting to go up to the infectious disease floor, the doctor and resident from that ward came to check out Noah before admitting him to the floor. They asked a bunch of questions and probed deeper into the situation. They then were very smart and did a 4 limb blood pressure. As soon as I heard that the leg and arm differed greatly I started freaking out saying to Keith, "Oh my God...he is a coarct....he is a cardiac kid". Keith, of course, had no clue what I was babbling about. 

Shortly after they did an echo. The doctor doing the echo was teaching a few other residents and was speaking out loud. He pointed out the coarctation of the aorta (basically, a kink in the aorta) and then he started saying more to them. He pointed out a ventricular septal defect as well! I burst into tears and my husband kept asking me, "what does that mean? What does that mean?". The residents looked alarmed and the doctor doing the echo merely passed it off, "Oh, she is a cardiac nurse". I heard it all and knew our situation was getting worse and worse....with a longer and longer hospital stay. Certainly longer than the original 10 days! I tried to explain as best I could to Keith (even though this wasn't my job!) and I think he just felt so confused and upset. I can't imagine how it would have felt because noone was explaining anything to him!

After the echo, they let me nurse Noah, even though he was breathing so fast, and they made plans to admit us. I realized then that we weren't going home until he was repaired. They wanted to admit us to the cardiac critical care unit and I begged them to admit us to the ward instead. They agreed to place us in the step-down unit. By now, it was 4am (we arrived in the early evening the night before). By 6am we were on the ward and Keith and I were settling in. I just nursed Noah and the nurse came in and said, "What are you doing? You can't feed him...he may go to the OR today!" That was it....we both lost it. It was too soon after hearing the news. After a lot of talking and negotiating, I chose my surgeon (the best in the hospital!) and he agreed to take the case. Thank goodness he is cautious because he wanted more echo's and an MRI done on Noah. 

Once things settled down, Keith and I were given a patient room on the ward to sleep in, since the ward wasn't busy. We laid down and held each other while we cried. It was the most pain I have ever felt in my life. Little did we know, there would be so much more to come.

After the next few days, Noah was sedated and intubated for the MRI, he had multiple echo's and we spoke to countless doctors. Apparently his case was more complicated than we originally thought. The gist of it is that he had a hole in the ventricles, one in the atria and he had the kink in his aorta. The VSD was not clear cut - as it rode over to the side a bit and started to take over the aortic valve - which had only 2.5 leaflets, rather than 3. The surgeon told us that Noah's valve was borderline in size, so he may not be able to do the simple repair he wanted to do. Instead he told us he didn't know what he was going to do. After conferencing with the doctors and surgeons in the hospital we had three options:

1. Fix the VSD and ASD with a patch, repair the coarct, and hope that the valve grows with him, allowing the increased bloodflow (from having the holes patched) to stretch the valve a bit more so it functions better - this was the ideal situation
2. Do a Ross procedure - Basically taking his pulmonary valve and putting it where his aortic valve is.
3. Make him a single ventricle - which we didn't want, since he had two normal ventricles. We were given a mortality rate of 50% with this surgery.

So on May 27th, 2008 - 17 days after his birth, Noah had his first open heart surgery. He went in around 8am and was done by 1pm. People came to visit us, some even brought food. I fell asleep on Keith's lap and stayed there for nearly the whole procedure. The situation was out of my hands and I felt I could rest with some peace at this point. At 1pm I went to pump (my milk supply was taking a huge hit between Noah not eating, stress and not pumping enough) and as I walked out, the surgeon walked in (I had just missed him) and he called Keith to the conference room - with a very straight and a blank facial expression. Poor Keith had to talk to him alone but the news was great...he was doing well but they were taking their time closing him up because they couldn't get the bleeding under control.

We had agreed to allow Noah to be part of a few studies, one of which had him externally paced, even though he didn't need it. So he had four pacemaker leads, two drains and many IV's. He stayed in the ICU for a week. 

A few days before our anniversary, Keith and I left the hospital for the first time to eat at a restaurant, as a friend had graciously given us a gift card to this restaurant. When we got back, we learned that Noah had been extubated. When we walked into the room, Noah was struggling to breathe, experiencing stridor and head bobbing. I freaked out - mostly because his nurse was not with him at this time, and no one was doing anything. Stridor is basically an inflammation of the airway - and the doctors came in and wanted to reintubate him. I flat out refused. They did not like that, because if they reintubated him, they could control his blood gases and breathing easier. However, my argument was that his airway were swollen enough from the extuabtion - how did they think they would get the tube back in there without doing more damage? Keith and I had heated arguments with the doctors over this but we wouldn't relent. The doctors kept telling us to go to bed (it was the middle of the night at this point) but we refused because we knew the minute we left the room, he was getting reintubated. Instead, we agreed to CPAP to assist his breathing. We sat by him the whole night until the staff physician came on during the day and looked at him and gave a "so-so" gesture with his hand. He asked why noone had given him dexamethasone - a steroid that would diminish the swelling of his airway. We were furious - he had a medication that could have fixed this problem hours and hours ago and noone thought to give it?!?!

By the time he got the medication, his breathing was improved but by that point, the damage had been done to his blood gases and we had to spend another few days in the ICU waiting for it to correct itself. Keith and I sat by his bed the next day, with me sobbing and asking the nurse, "Why does noone care that our baby is dying?". This event was so painful that I still tear up thinking about it. We really thought we were going to loose him that day.

Shortly after we got Noah's breathing under control, Keith started to worry that he had gone without food for so long. It had been a few days, so after speaking to the nurse, we got him some TPN - that is, nutritional supplementation via an IV. He was only on this for 24 hours before I tried to nurse him. Once he got the nutrition, he seemed to improve significantly. It was hard to get nursing started again, after the break and with nasal prongs - it all seemed so hard! It wasn't until Keith suggested we try nursing without the nasal prongs, that we seemed to get the hang of it. We were also battling a case of thrush, so that complicated matters further. With the help of nutrition, he got better so much faster, so we were able to get up to the ward after a few days.

After arriving on the ward however, we were home in a couple of days. Noah had developed a blood clot in his femoral artery so I was giving him twice a day injections of blood thinners and he had some reflux as the result of the surgery and being intubated - but otherwise he did quite well. We didn't have to endure any parental education, so we were home a day or two earlier than normal. He was back to breastfeeding but since he hadn't breastfed in weeks, and my milk supply was very low - we had a rough go of it. It wasn't until he was 4 months old that we got into the swing of things. He ended up nursing until he was 16 months old - when he self weaned one day, likely because I was pregnant with Layla.

Time passed and Noah grew and got quite chunky (an abnormal situation for the cardiac child!). He was doing well and we were told by the cardiologist that his long term prognosis was that he was "just like a healthy boy". 

Noah's health overall was great - however, after a set of immunizations, he seemed to be having absence seizures - they were so freaky. His eyes would roll back in his head and he would zone out for a few seconds. They happened over and over and over - probably 100x a day. We had a neurology check and all turned out ok and the episodes stopped eventually. We still have no idea if they were truly seizures or what really caused them.

At his one-year check up, he was doing very well but we had to book a follow-up for 9 months later because there was some muscular crowding occuring below his aortic valve. He was in no failure at all, but the muscle bundles would have to be removed eventually. Otherwise, his aortic valve was holding its own and his patch repairs were holding up nicely.

We just got back from the 9 month check up - unfortunately, his surgery will be sooner rather than later. The crowding has grown some more but he is not yet showing signs of heart failure. We were also told the valve isn't holding up as well as we had hoped, so he may still have to have the Ross procedure done, or have a mechanical valve inserted. Keith is researching this a lot (because that is what he does), but I am trying not to think about it because it upsets me that Noah now needs at least two more surgeries. Also, since they believe the tissue under the valve to be muscular, rather than fibrous tissue, it will keep growing back - which means that he will need many more surgeries over his lifetime. News we could have done without.

Regardless, Noah is a strong and very healthy looking 2.5 year old boy. He is tall and heavy for his age - in a good way, of course! He keeps up with the other kids at his daycare and has the nicest personality you could ask for. He is well mannered and at times acts older than his age - which I suppose is what happens to chronically ill children. He amazes us more and more every day. 

For now I will leave you with pictures of our gorgeous boy. He is truly a miracle - speaking of which, that is where his name came from: through all the trials we endured when pregnant we chose the name, "Noah Kayden" which translates into "Peaceful fighter". He is the most peaceful child you will meet and he truly had proven himself to be a fighter. 
Noah at birth
The night before his surgery

About two weeks after surgery
1.5 months old
2 months old
First Halloween
6 months old
First Christmas
9 months old
First Birthday!
1 year
Apple picking with mommy: 1.5 years old
Second halloween: 1.5 years old
Enjoying the snowfall: 1.5 years old 
Playing basketball: Nearly 2 years old
On the playground: 2 years old
Second birthday!
Apple picking with daddy: 2.5 years old