8 Days Old and 2nd surgery

Hi everyone,

Well it’s been a crazy 8 days since Tahnee was born! A lot has happened since her surgery last week Friday. Firstly, since then the doctors have slowly begun reducing her midazolam (sedative) levels and it was turned completely off on Monday.

At the same time the doctors were also reducing her morphine levels (a bit slower than the sedative though). Over last weekend she was receiving 20micrograms per kilo per hour, and everyday they reduced it, until yesterday when it was down to 5micrograms per kilo per hour! They decided not to reduce it further as she was scheduled for surgery.

The next big item of news that we heard on Monday and Tuesday was that her operation was being brought forward, depending how she went. Her next operation to put her bowel back inside her body and stitch her up was scheduled for Friday the 2^nd September. Each day the doctors do their rounds and would push a bit more of the bowel inside. Gravity also helped to move it down. The doctors were extremely impressed with how fast the bowel was moving that they moved the surgery to WEDNESDAY afternoon (yesterday)!!

Wednesday was a very interesting day. In the morning we were able to introduce ourselves to the parents of another baby in the NICU. We had heard the day before that their baby was also born with a diaphragmatic hernia! Its great being able to share this journey with someone who is going through exactly the same emotions at the same time. We can each be a support for the other. That baby also went for surgery yesterday afternoon, but we haven’t spoken with his parents since then.

Wednesday afternoon at around 230, Tahnee headed off for her second surgery in less than a week. We were told the whole procedure, including going under anaesthetic, would take about 3 hours. However, after only 2 hours the surgeon was back with great news. The operation was a success! The bowel went back inside very easily and there was enough skin to stitch the wound closed without needing another patch!

Within minutes of returning back to the ward, Tahnee had her eyes open and was very alert. The nurses upped her morphine levels due to her surgery (just in case she was in pain). And since then she has returned to her “stable” stats, although overnight her pain scores were very high so the nurses upped her morphine levels back up to 20mics.

After surgery - no more bag!

This morning on their rounds, the doctors dropped the morphine levels. Once they reach a certain level (unknown to us) they will remove the breathing tube in her nose. They will more than likely switch her onto a different ventilator that makes her do more of the work. They hope to do this, as well as remove other tubes over the next two days.

As for me and Chris, we are doing well under the circumstances. Just the usual complaint that all “new” parents have – lack of sleep!! Our bodies and minds are also adjusting to the conditions associated with the NICU. The room is very warm, so we need to remember to stay hydrated. Plus we are learning all the medical terms etc.

Lucas is also adjusting okay. It must be confusing for him to not have mum and dad around like normal. Thankfully he enjoys his days that he spends with a friend while we are at the hospital. However, he is starting to do little naughty things – for instance my brown tile laundry floor became white when he discovered the laundry detergent tub on the floor was accidentally left open!!

He also wants to do things that mum does – and a few times he wants to “help” get milk out for Tahnee. This “help” includes him expressing milk from himself and also helping me by pumping the trigger. It’s very cute!

Surgery Results

Firstly I need to apologise to our readers for not updating you on the progress of Tahnee and her surgery results sooner. As you can appreciate we are both pretty tired so sleep has been our prerogative.

In my last post I said Tahnee had gone for surgery and that we would know more around lunch. Well at lunchtime we ran into someone who had been in the operating rooms. He said that although things were going well, Tahnee was still in theatre and would be an hour away. So we sat down to wait in the parents lounge attached to the NICU.

Just before 1pm the surgeon came in to speak with us. She said that the surgery hadn’t gone completely to plan. My heart just stopped at this stage! The plan had seemed simple – open her up, move the organs down, sew up the diaphragm and close her back up.

The surgeon explained that Tahnee’s abdominal cavity had failed to grow in-utero. Understandable when there were few organs down there to make it grow. Anyway, as a result of this, it is a tight place for the organs and the surgeon decided it was better to leave the bowel outside the body. This means that over the next week the doctors and gravity will slowly push the bowel back inside the body which will start to push her stomach out. And next week sometime Tahnee will go back into theatre to have the rest placed back inside.

The surgeon also told us that because she didn’t have much diaphragm on her left side due to the hernia, she was forced to use a patch and stitch this to Tahnee’s muscles and tissues. This patch does not grow; however, the muscles and tissue do, and will eventually cover the patch. Tahnee will be able to breath normally on her own, but when she is older she may have a few restrictions physically (eg. Can’t scuba dive) but will be able to play sports like any other child.

We were then allowed to go meet her portable bed coming back from surgery. It was definitely confronted seeing your daughter leave for surgery looking perfect on the outside (aside from the tubes) and coming back with a part of her internal organs on the outside. However, we count ourselves blessed as the baby in the cubicle next to us was born with an external organ, so we have been used to seeing that for the last few days!

Once Tahnee arrived back on Ward 6b (NICU), the staff worked to untangle the cords and transfer them back to her monitors. The consultant that has been assigned to us was concerned with her breathing on the ventilator and her stats (oxygen level, heart rate, blood pressure, carbon dioxide level and body temperature) and had sent someone to get the other type of ventilator, which is a bit gentler on her lungs. During this conversation the staff were still busy transferring the cords and plugs, when all of a sudden our consultant looked at the monitors and asked what had just been done to Tahnee. The staff responded by saying they were just moving her. And that simple act of moving her had helped her breathing and stats return to similar numbers as they were BEFORE the surgery, and the decision was made to leave her on the same ventilator! She is certainly living up to her name – it was only through God’s grace that his happened, and so quickly!

In the time between returning from surgery and now, Tahnee has been doing extremely well. The doctors have instructed the nurses to begin turning down her midazolam levels (sedative) and she has also had her morphine reduced. She is very stable and continues to amaze the doctors, nurses, medical staff and us.

The pink pinafore is covering her bowel in a bag

on a personal note, we have both spent the night in the parent accommodation next to the NICU. We managed to sleep fairly well. And as of now, we haven't heard that we need to vacate (priority is given to country parents and breastfeeding mums). It is very nice having a room to go back to, a place to escape and be by ourselves. We won't be staying indefinitely and will be back home at nights next week.

Also, my milk has come in and expressing has been going well. My colostrum and milk are being frozen and Tahnee will receive this once she starts to feed normally (after surgery next week). But ts hard getting used to the night feeding/expressing again, especially when they arent accompanied by snuggly newborn cuddles. As I've said before, these things will make our first cuddle even more special :)

S-day

Today is surgery day! We arrived at the hospital bright and early with the slim chance of having a cuddle before Tahnee was taken off to surgery. However, the nurses didn’t want to risk her stats changing too much so we were unable to get this cuddle. Never mind…we shall just wait patiently, knowing that our first cuddle will be even more special.

During the next few hours we were able to speak with our surgeon, the anaesthetic team and other surgical staff. They each explained their role in the surgery and allowed us to ask questions. We even managed to take a quick photo with our surgeon to put in Tahnee’s scrapbook/photobook.

Once Tahnee’s machines had been changed over to the portable system, the anaesthetic team came back and we all traveled the short distance to the operating theatre (which is on the same floor).

We are now in the Parent’s Lounge attached to the NICU, having a late breakfast, doing some paperwork and catching you all up on Tahnee’s progress. It will be 3-4 hours before Tahnee will be back in her space in the NICU. So we won’t know anything until after lunch.

Thanks to everyone who has sent us messages, emails, blog comments, facebook comments and calls. We truly appreciate all the prayers and support we are receiving.

A New Baby Daughter

TAHNEE CHARISSE VANDER LINDEN

~ 3440g ~ 56cm ~ 654pm ~ 23/08/2011 ~

Last week Friday we were told that we would be booking in for an induction of labour the following Tuesday. I also had a sweep done which left us on tenterhooks over the weekend, wondering if that was enough to spontaneously start labour. However, our little girl wasn’t quite ready to start her fight for life, so it was off to hospital that we went.

Due to a high number of women in the birthing suites, and a lack of staff, our induction was put off for a few hours until a midwife could be called in and come in. When she did come in, we began getting ready. (Stop reading here if you get queasy about medical stuff).

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Since I was being induced, I knew there was a good chance that it could end in a c-section. So I elected to have an epidural put in before the labour had been started. This and my canulla were put in before our midwife broke my waters. And I ever so glad that that didn’t happen at home. My amniotic fluid levels were very high!!

After artificially breaking my waters I was started on the Syntocinon drip too. I also elected to start the epidural. This meant that the first few hours of contractions I didn’t feel!! Much different to Lucas. With his labour I had had contractions for 24 hours before asking for an epidural. Tahnee's labour was a walk in the park by comparison.

Two hours into the induction we met a new midwife and said goodbye to our first one who had finished her short shift. Our new midwives' name was Laura. And she was such a laugh. I don’t think we really stopped talking until I reached the pushing stage J.

Laura was a fantastic midwife. She kept such a good eye on me and Tahnee, our trace (monitors for contractions and baby’s' heartbeat). This trace was linked to the computer and could be seen by anyone in the nurse’s station. There was a cause for concern as Tahnee's heart rate would drop with each contraction before returning to baseline. This resulted in quite a few visits from other midwives, nurses and doctors who all came to check that everything was okay.

At around 5 pm we were told that the trace was too alarming and that they wanted to check how the baby was actually doing. This involved putting a small needle into baby’s head while still in-utero and having this tested. The first result came back good. I was also told I was 7cm dilated. The second test was done at 545 and also came back good, better than the first. Again I was told I was 7 cm. Then at 630 we were due for another test. However, before this was done, the doctor said she would do a quick examination to see how things were progressing, and before we knew it, we were told that I had dilated to 10cm and was ready to push.

The neonatal team were called and came into the room. There was also Laura, another midwife and Kylie the doctor present. I was told to begin pushing with the next contraction and it was here that the doctor got in my face and told me she did not want to pull our baby out, so I had to push her out myself J. It was good to be told this as it helped psychologically. Of course, they would intervene if and when necessary, but she was giving me to the determination I needed. Then, once the contraction hit I had 3 women all telling me to PUSH!!  After only 4 pushes, our beautiful daughter entered the world. The wonderful thing was that she was given straight to me and placed on my stomach (especially after being told before going in labour that this wouldn’t happen). There wasn’t enough time for Chris to cut the cord, but he was able to go with Tahnee to the humidicrib in the room and watch the neonatal team work at putting the necessary tubes in. After being told there was definitely no chance I would get to hold her, it was very special to have that 10 second cuddle!

After stabilising Tahnee enough to move her to the NICU, the neonatal team took her over for a quick glimpse and then headed down with Chris. I stayed behind with Laura as I needed a few stitches and time for the epidural to wear off. We had a bit of a time limit as Laura's shift was due to finish at 9pm and Tahnee had been born at 7pm. After time to snooze a bit in the delivery room, a quick visit from our parents and phone calls made to immediate family, I was finally stitched up and allowed to have a quick shower before heading down with Laura to the NICU. It was awesome for us to have Laura see her, since she had been fantastic in labour, coaching me when needed.

At this stage it was almost 10pm and our parents had been in the hospital since about 6pm. Since there are only 2 adults allowed per bed, Chris stepped out and let my mum come in. Then we both went up to my room and waited for Chris and his parents to come back. They all didn’t leave till 1130. The nurses then kindly put a mattress down for Chris. After expressing some milk and a quick visit for Chris to the NICU we went to sleep for a few hours.

We were back in the NICU by 7am for an hour visit. We were told that the doctors would be doing their rounds around 9am and they would call when they got to Tahnee so we could here their assessment. Once we got down there, the head doctor said Tahnee was doing much better than expected, but said it could just be a "honeymoon" period. However, since was well stabilised and on the right ventilator for transport, they would be transferring her when the ambulance and NETS Team were available. When they moved onto another baby, a nurse called PMH and we were told they weren’t busy and would be there in half an hour, and Tahnee would be transferred within the hour.

Just before the transfer happened, we were told to expect Tahnee's stats to drop since she doesn’t particularly like to be touched. However, during the whole time she was great and didn’t react negatively at all!

Chris also asked the NETS team which way they would be heading out and we found out that they would be going out the main entrance. So we asked if Lucas (who was visiting me) would be able to see his sister for a few seconds in the corridor if were waiting. And they said YES J

Chris stayed with Tahnee and took photos of the NETS team moving Tahnee in her incubator through the corridors. I was waiting with Lucas outside the NICU entrance and the team kindly stopped so Lucas could see her and blow kisses at her :) They even took photos for us! It was so special for him to see her and he thought it was pretty cool too. Again we had been told that Lucas wouldn’t be able to see her until she came home, since only parents and grandparents are allowed in the NICU at both hospitals J.

All is all, the doctors are amazed how well she has stabilised and how quickly she has been moved to PMH. We have had a chance to catch up with both our midwife and with Professor Dickinson and one of the midwives on her team. All are happy with Tahnee’s progress. And since moving to PMH, the doctors there are happy with her progress too.

At PMH

I will endeavour to keep the blog updated when I get a chance to.

P.S. Charisse means "Grace"

Wednesday Surprises

Yesterday was a pretty special day, filled with two surprises. The first surprise came around midday when a friend knocked on the door. I opened to find her holding a beautiful flower arrangement and a card that said they were thinking about us.

Then, at night after Chris checked the mailbox he discovered a package that had come all the way from Canada. It contained two pairs of hand knitted booties and a lovely letter. Thanks Uncle B, Aunt J and family. The booties are already in my hospital bag with the other baby items :)

Baby Update: 38 weeks

I just realised as I sat down to type this blog post that my scanner is no longer connected to the computer, so I can’t upload photos of our baby :( My apologies and I shall endeavor to scan them in when it’s all connected again. (We are still trying to get everything organised after preparing our spare room to be Lucas's new room).

So last week I had two appointments at King Edward Memorial Hospital. My blood tests I had taken after I nearly fainted revealed my iron and hemoglobin levels were very low (no surprises there) and my doctor wanted me to have an iron infusion done. This was done on Thursday and took all morning. It was also scheduled for 745am! Thankfully my driver, a.k.a. my MIL, didn’t mind getting up early and driving me in. We were also very fortunate not to hit any of the traffic that was a result of the 15 car accident on the Freeway.

We actually ended up being quite early for the appointment and that meant we weren’t rushing around trying to find parking and finding our way around. The infusion room ended up being a 4 bed room in the normal maternity ward and all 4 patients were pregnant. The appointment began with checking blood pressure, pulse rate and temperature. Then one of the nurses prepared me for the canulla to go in. Unfortunately it had to go in my elbow, which meant I needed to keep my arm out straight, resting on a pillow for the 2.5 hours it took to infuse the bag of liquid iron L.

Anyway, my MIL was able to sit with me in the room, the nurses were all very lovely and we were also allowed free use of the TV (not that there is much on during the day, as many SAHM can attest too!). We also came prepared with drinks, food, books and magazines. After the required 2.5 hours I had to stay for monitoring for 30 mins before being discharged. The next two days were pretty awful. We had all been told there are possible side effects and I managed to get the ones that made my muscles ache like I had the flu!! Not nice, especially when I was kind of expecting to feel heaps better straight away. But, now the achy muscles have gone and I have noticed my energy levels have increase, so it much be working J

Then our second appointment at KEMH was on the Friday and this was our regular ultrasound with our specialist. My MIL came with us again, hoping to see the 3D scan this time! Thankfully I was able to lie on my side during the scan and we all got to see our baby again J. The baby is progressing well. They are growing as they should and actually had a little weight growth spurt during the week. They are predicting him/her to be a healthy weight, and depending exactly when they are born, probably on the bigger side. This isn’t unusual for me/us! And when I told my regular GP/OB who delivered Lucas (and who I keep updated on the progress of the baby) that bubs was getting big…he just laughed at me! Oh well…can’t be helped.

During the 3D part of the scan, our baby had their hands in front of their mouth and our doctor was trying to nudge them and get them to move them. When he/she finally did move them, they decided to pout about it! Showing their personality already J. Think they might be a stubborn one!!

Anyway, our appointments have changed to every week now, so once again we will be on the Freeway on Friday morning. We also found out that another CDH family has their scan on the same day, at the same time, so we may even be able to meet them in person too. Their baby boy is due 6 weeks after our baby. So that will be exciting J.

Finally, just a small update on the CDH baby born last month that I mentioned in a previous post. They are doing well and last week I received an email saying they were hoping to come home this week. This is fantastic news J. Hopefully we have just as short a hospital stay. But like our medical team always advise us – every CDH baby is unique.

Hopefully we will be sharing our baby news sooner, rather than later. I officially have 12 days till the expected due date!

Till next time J

As you may have noticed, I didn’t give a title to this blog post. That’s because I couldn’t think of something that could adequately sum up what last 2 weeks has been like for us.

To start off with, our official due date is this month!! Finally :) The last few weeks have felt like they have gone by very slowly. But now I am nearly 37 weeks, so officially full term...it a good feeling to read that small milestone, esp as our doctors have said they prefer not having to deal with premmie baby issues as well as CDH.

Now, back to last week...for us it was a mixed bag...up and down...good and bad etc. On day we heard the good news that the friend we made a few weeks ago had given birth to her baby daughter. However, the doctors were unable to stabilise her and we heard the sad news on Thursday morning that she had passed away. We were devastated for our new friend, her husband and their families. We (ie. almost everyone) often take the birth of a child for granted, yet the sad and frightening reality of CDH is that we and anyone else carrying a child can lose them. So it was a reality hit for us, and it hit us, and our families, hard! To our dear friends we made through our CDH link, we think about you and your precious baby girl everyday and we have and will continue to keep you in our thoughts and prayers.

Then Thursday afternoon we hard that another Perth family we have been in contact with and are also expecting a CDH baby were having contractions. These contractions led to a c-section and the birth of their son. Their son did amazingly well and stabilised so quickly that they were able to transfer him to PMH the next morning. We have since been updated that he has had surgery and some tubes removed. He continues to do well. We also keep this family in our thoughts and prayers. Again, this is the reality of CDH. And yet for us, the difficult thing was hearing about these two cherubs in the same week, and so close to our due date too. We are constantly reminding ourselves what the doctors tell us - "there is no 1 factor that determines if a CDH baby will survive or not. The greatest challenge with CDH is the unknown...the unknown of how the baby will ventilate". Until the baby is born, we and our medical team have no idea what will happen to our unborn baby. Which is very scary and a huge lesson in trust!!

Then yesterday we had another appointment which didn’t quite go to plan. Chris's parents came with us to see their first 3D scan and of course, see their youngest grandchild.

Throughout this pregnancy I have had problems with lying on my back. The baby doesn’t like it and I often get dizzy. So going to the scans each time is not always pleasant. Our medical team do a fantastic job of getting my wedges and other supports and working with me when I need to lie on my side. However, yesterday my body didn’t relax like it normally does. I got really dizzy and very hot. I should also mention that I am prone to fainting...and these are 2 signs of that occurring.

Anyway, to cut a long story short, I didn’t faint, but my blood pressure dropped so fast and so low that the machine almost didn’t get a reading. Our medical team kept me in the ultrasound department for an hour under observation and got me to have a blood test. The results came back with almost no iron levels, so I need to have an iron infusion next week.

The worst thing for me was that because this happened so quickly into the scan that my in laws only got to see the 2D part and even though I asked, the medical team were very reluctant to continue with the scan, so they were unable to see the baby in 3D. It was very disappointing for me and for them. And we also got no photos :(

So as you can read, it’s been an up and down week for us...but we are on the home stretch and can hopefully be sharing baby news with you THIS MONTH! :)

It is here that I am reminded of the infamous poem "Foot Prints in the Sand" - we have this as a quilted wall hanging in our house and we also have a printed poster hanging up in my mum’s house:

One night I dreamed I was walking along the beach with the Lord.

Many scenes from my life flashed across the sky.

In each scene I noticed footprints in the sand.

Sometimes there were two sets of footprints,

other times there were one set of footprints.

This bothered me because I noticed

that during the low periods of my life,

when I was suffering from

anguish, sorrow or defeat,

I could see only one set of footprints.

So I said to the Lord,

"You promised me Lord,

that if I followed you,

you would walk with me always.

But I have noticed that during

the most trying periods of my life

there have only been one

set of footprints in the sand.

Why, when I needed you most,

you have not been there for me?"

The Lord replied,

"The times when you have

seen only one set of footprints,

is when I carried you."