YOU'RE NEVER FULLY DRESSED WITHOUT A SMILE

Amanda is currently having a cuddle with Lauren. Both of them are too comfortable to disturb so I (Elysha) will take on the blogging duties for the night.

Today was a pretty good day for Lauren, as far as good days in the ICU go. This morning, Lauren gave her first post-surgery smile to one of her favorite nurses, Carolyn, as she started her shift. Throughout the day we were able to get more and more smiles out of her. This is amazing to see because normally Lauren is a very smiley, happy baby so seeing smiles means that she is starting to feel like herself again.  Here is one of the smiles that her Uncle Cam was able to capture.

Today she also had a procedure to put a PIC line into her arm. This is an IV line that she can go home with in case they need emergency access anytime in the future. The nurse mentioned that an X-Ray showed that it is settled in the wrong place and they will have to readjust it tomorrow.

Lauren then spent some time playing with her toys and sitting in her physio chair, which she didn't seem to mind. I arrived from California with some (noisy) toys to help her with her physio that Lauren seems to love but the nurses will very shortly hate me for. I am so glad that I came back on the day of her first smiles.  There is no greater feeling than being greeted by that smile.

Please pray that Lauren's PIC line is readjusted to the proper place tomorrow and that she has a restful night of sleep tonight so that she can continue to heal.

Wishing everyone a fun and safe long weekend.

SUCH A SIMPLE GIFT

I was talking to Lauren's nurse today who was also one of the people who worked the ECMO machine when Lauren's heart was being bypassed. Knowing that Lauren had to receive blood transfusions, I asked him how much blood she had received. I was shocked by the answer. Lauren has received 31 units of blood. At Lauren's weight, she has just over 400mL of blood in her body. Each unit of blood contains 450mL of blood. That means that all of Lauren's blood was replaced almost 35 times over. 

We are asking you to help us give back. Just to replace the blood that was given to Lauren, we need 31 people to donate blood. Can you help us to give? The 31 people who donated blood before we even knew we would need it helped to save our daughter's life... now let's pass that gift on. 

Canadian Blood Services or 1-800-2-DONATE

OUR LONG WEEKEND PLANS

This morning when I got in to see Lauren she had had her arterial line removed and the cardiology fellow had removed her pacemaker wires and her drain. All of the IV machines were sitting dark in the corner and only half of the readings were posted on the monitor. The echo of her heart showed that her blood flow has remained the same through her coronary artery which is good news. 

The doctors have decided that Lauren will be staying in the ICU for the rest of the long weekend. This will allow them to keep a close eye on her. She is still being slowly weaned off of morphine and trying to heal so her body is working hard. She was in pain today after having the pacemaker wires and drain removed from her chest. Hopefully in the next few days she will start to feel better and some smiles will come shining through. 

While we are primarily focused on her heart, today an ultrasound of Lauren's leg showed that she has some damage to her artery where her arterial line was placed. I am praying that this does not lead to any complications and that with time it is able to resolve itself naturally. 

Lauren has made big strides but the doctors are still very cautious with her. They know that she can look great on the outside and then suddenly crash very quickly. That is something that I will have to try to find some peace about when we go home. I don't want to be sitting there watching for her heart to stop. I want to watch her grow and explore like any other baby would. I think that it will take awhile at home before I am really able to do this. 

OUR BORING BABY

Last night was non-eventful - exactly what we like to pray for! Lauren had periods of being awake but she remained calm and then she would settle back into sleep.

Today the doctors have chosen to challenge her with a few things such as removing the BiPAP and just putting her on oxygen prongs. She likes this because it allows her to sleep with her hands around her face and tucked behind her head (her favourite sleeping positions). They have also started to introduce some physiotherapy with Lauren sitting up and playing with one of her favourite toys from her last stint in the hospital.

She gets tired pretty quickly but it brings such joy to our hearts to see her sitting up and getting one step closer to being the happy and radiant baby that she is.

When I was on Pinterest this morning I saw a print that I will need to order off Etsy for Lauren's room. As soon as I saw it, it spoke to my heart about the baby that I have been blessed to walk through this life with. I continue to be so amazed by the strength of our little girl and the strength that God is pouring into her. For now, Lauren can sleep because there are big things planned for her future. She just needs to continue resting so that she can get strong and head out to fulfill the plans that God has for her. 

ARTIST: YELLOW BUTTON STUDIO
http://www.etsy.com/listing/91217503/let-her-sleep-for-when-she-wakes-she

   

BREATHE

Praise the Lord, Lauren had a rested, relaxing day. 

She spent much of the day sleeping, which is the best thing for her body to be able to heal. I got to spend a few hours this afternoon with her in my arms. Unlike yesterday, when every breath had her bobbing in my arms with stressed breathing in her stomach, today she lay just like a baby sleeping in her mom's arms. 

Lauren got physio twice and that helped to clear her lungs quite a bit more. When she doesn't need to cough, she is able to sleep better as well. 

For the first time today the doctors made positive comments. Her surgeon said that her left ventricular function is no worse than it was when she was discharged. While I know that her function was described as quite poor at that point, she was still alive with it. One of the cardiologists also spoke about her heart recovery and that it will take at least a year for her to recover. The fact that Lauren's future is being spoken of is a huge victory for us. 

On Sunday evening, the Lord told me that I needed to wait. This time Lauren's recovery will not be as fast as the last time, but that doesn't mean that it won't happen. But I am to be still and wait on the Lord. Yesterday the hymn "Be Still and Know That I Am God" started to play in my head. I didn't know what came next (I'm musically challenged that way) but I continued to sing through the song. The second verse is a repeat of the line "I am the Lord who healeth thee". I found this so comforting. I knew that there was a third verse and when I looked it up, I followed it as my word for today "In thee, O Lord, I put my trust".

Be still and know.

He promises healing.

In Him we trust.  

REST NOW

Lauren had a restless night last night. She was fighting the BiPAP (Bilevel Positive Airway Pressure) breathing mask and was quite agitated. This morning they tried to remove her from the BiPAP machine and just have her with nose prongs but her oxygen saturation started to go down and her breathing became quite labored. It was nice to be able to hold her during that time but I could feel how much work she was starting to put into her breathing which is very stressful for her heart.

The doctors placed the BiPAP back onto her face and she actually settled quite well. I think she realized that it was actually helping her, even though it is annoying to have something on your face.

Lauren spent most of the rest of the day snoozing. She had fluid building up in her lungs and needed to do some good coughs to try to clear her airway but it hurts her chest so much to cough that she does everything she can not to. When suctioning to encourage coughing (which is a process that is enough in and of itself to break a mom's heart) wasn't enough, they brought in the physiotherapist who managed to clear quite a bit of mucus out of her lungs. Since then, Lauren's oxygen saturation has been better and we pray that it stay that way.

The doctors have decided that they need to try to slow down and let Lauren have some recovery time before trying the take her off any other machines. We are so thankful for this because she is so tired that she needs some time to just rest. 

Tomorrow they will try to introduce some other medicines but they will keep supporting her heart and her lungs with the BiPAP machine. 

We pray for a boring night and an equally boring day tomorrow. Just let her get some rest.

BE STILL

For the past two days I have been frantic, depressed and struggling to find hope in this situation. Elysha was able to put this experience into words when she said that it's like we've run a marathon and just as we got to the end, exhausted and elated, we were told that we have to turn around and do it all over again. Our tanks are empty. As she said, "I'm exhausted because this little 6 month old baby is so strong."

I was having a hard time praying and trusting in Lauren's healing. but there is nothing that I can do to help Lauren other than those very things. This afternoon, after I broke down yet again in the ICU and came to rest, I felt like I was being told that I need to wait on the Lord's timing. I can't hope to rush things as everything is in His hands, not mine. I am not to worry and I am to wait on the Lord. He is holding Lauren in His hands.

As I've been praying throughout the day I kept hearing a line from a song in my head "gold, refined in the fire". I can't even place the song, I just know that it is one that I haven't sung since I was much younger. When Matt joined me this evening, he grabbed the iPad to look up a verse that has been whispering in the back of his mind and he couldn't remember the whole thing. He typed in, "of greater worth than gold," and got back the verse "These have come so that the proven genuineness of your faith - of greater worth than gold, which perishes even though refined by fire - may result in praise, glory and honor when Jesus Christ is revealed" (1 Peter 1:7).

As we have been dealing with our brokeness and screaming inside with the pain of this experience, God is whispering the same words into both our souls. We are being refined. This is a fire stronger than anything we have ever experienced and sometimes it feels like we are being burned up, but God will not give us more than we can handle. We will wait upon the Lord.

God, please continue to hold our little baby Lauren in your hands and help us to trust that she is there. Please pour out your healing into her little body and remove any and all complications that are possible. Give her your peace, a peace that passes all understanding, and your strength that is more than anything that we can give to her. Thank you for the blessing of our daughter. Thank you for drawing us near to you and holding us all close. God, please give us the patience to wait and use that time to heal Lauren's body in a way that will ensure that she never comes back here. Thank you for your faithfulness. We give you all the praise, glory and honor. Amen.

HER HEART ISN'T READY

This morning the doctors were able to close up Lauren's sternum. It was a great birthday present for Matt!

Then they removed the breathing tube. Lauren started to struggle and her oxygen saturation dropped, so her time off the ventilator was short lived. The ventilator not only helps her lungs but it supports her heart as well and her heart couldn't handle doing all of the work by itself.

She is now on a face mask that covers her nose completely and her oxygen saturation has gone back up.

It really feels like today has been two steps forward and one step back.

Please pray that a few days on the face mask is enough for her heart to rest and take over the job again next time they try to challenge it. We need as much prayer as we can get. We want our stay in the ICU to be as short as possible and to be moved up to the cardiac ward quickly.

IT WAS EASIER GETTING HIT BY A PICK UP TRUCK

This second surgery has shook us to the core. Praise the Lord that Lauren did not come out on ECMO (heart bypass) and that her internal bleeding from the surgery is not too high. She has been generally stable this morning since they've been able to take down her temperature and brought down her heart rate. Her blood pressure remains a little high, but her Echo this morning showed that there is good blood flow through the artery and that the speed is not as high as yesterday. They even ventured to say that her heart might look "snappier" than yesterday.

Even with all of this good news, we feel so exhausted. It is hard to be back here and to see Lauren attached to all of these machines when just a few days ago she was so vibrant and showed pure joy to being alive. But she is still alive. And we will be taking her home again.

I know that we keep asking for prayer but that is all that we are able to do to try to help her. Our prayers right now are that her blood pressure comes down and stabilizes, that scar tissue doesn't form again, and that tomorrow they are able to successfully close her sternum. Our personal prayer is that we have the strength to go through this again. We are so emotionally beat down that many of our prayers no longer have words, just crying out. We long to hold our little girl again.

UPDATE

Lauren has been re-admitted to the ICU and will be going in for surgery to repair an artery that is being compromised by scar tissue. Please pray.

Updates to follow.

UPDATE - August 24, 5:30 PM. Lauren is currently in surgery. The doctors found significant narrowing of the coronary artery. If it is not a clot, Lauren's artery will have to be replaced and she will again be placed on ECMO. Please continue praying that she has the strength to battle through this again.

UPDATE - August 24, 11:00 PM. Lauren's surgery is finished and the Doctors are reporting that it went well. She will be in the operation room at least another hour or so as they try to take her off of ECMO. Please pray that her heart is strong enough to beat on its own so that they do not have to leave her on ECMO.

UPDATE - August 25, 12:45 AM. The Doctor just came in to give Amanda and Matt more information. Lauren had something called adhesion where scar tissue had grown in several places around her heart, causing parts of the heart to become stuck together. The surgeons were able to separate it, reattach the coronary artery and put an extra patch on it to hold it in place. Lauren has been weaned off of ECMO and the doctors are now waiting to see if she is able to stay off of the machine. Please continue to pray that she can stay off of ECMO and that her heart is able to properly function on its own. Also please pray that her body does not continue to show any signs of adhesion. The Doctor mentioned that adhesion is very rare, but once the body has done it once it is possible that it can happen again.

UPDATE - August 25, 10:00 AM. Lauren is stable and back in the ICU. She was successfully weaned off of ECMO after surgery and is no longer on the machine which is an answer to prayer. Please continue to pray that her body does not produce any more scar tissue around her heart.

WE MADE IT 48 HOURS AWAY FROM THE HOSPITAL

Since Lauren has been home she has been spending her time smiling, eating, and napping. 

Yesterday Matt and I noticed that she had stopped napping for more than 10 minutes at a time. By 11:00pm last night she was still wired so we decided to take her to the emergency room to see if there was something going on. She had similar difficulty sleeping when she was going through withdrawal in the ICU so we wondered if her methadone weaning schedule was still too steep. Again, Lauren turned on the charm. Her smile got us sent home pretty quickly and she finally fell asleep around 3am. 

This morning the cardiac clinic called us to see if we would like to come in today to have her checked out. Sure! We've missed our home away from home. 

Lauren had another EKG and Echo and then we saw the young doctor who first saw her ALCAPA. I knew that the news wasn't awesome when the doctor walked in with two other doctors as well. Apparently there is the chance that Lauren's artery that has been moved has some scar tissue which is making it skinnier than it should be - kind of like pinching a hose and having the water spray out faster. They are not quite sure if it is faster because her other Echos were a little fuzzy and this was the first really clear picture that they have been able to capture. Lauren was sent for some blood work (thank you Matt for taking that one for the team and going in with her) and we should know by when she sees the cardiac surgeon what the results are. 

I started to feel really anxious when I heard that she might have an issue because I just want to hear that she is slowly and surely getting better. It also doesn't help that she is feeding every hour and a half round the clock so I'm pretty tired. After a nap I was able to look at it a bit more objectively.

If her artery does have scar tissue, they will be able to fix it without opening her sternum up again with an angioplasty. Her mood has increased since her time in the hospital and she has started to use her arms and legs much more than before. I don't want to lose sight of what I'm supposed to be focused on - miracles, instead of maybes. 

The radiologist today was excited to see Lauren because she actually has a friend whose daughter has the same condition. Since ALCAPA is very rare, this in itself is an interesting God twist. She showed us pictures of the little girl now and told us that it took awhile but that her heart slowly but steadily got better. That has really helped to give me hope. It is amazing that just when we need a little boost, God sends exactly what we need.

Our prayer requests today might be a little more obvious. Please pray that Lauren begins to sleep more because that time is ideal for her heart to heal itself. Please pray as well that there is no scar tissue clogging up her artery. And please continue to pray that her heart shows improvement. 

Lauren is know throughout the hospital for her recovery thus far and we want her story to be know for her complete healing as well. 

HOME SWEET HOME

Yesterday Lauren finally took note of her goals on the board in her hospital room.

On Saturday Lauren gained 2 more ounces so the doctors were happy with her progress (and of course she charmed them with some smiles again) and I was comfortable enough with her gain that we could brave going home.

Lauren's Aunty Desiree made a special onesie for Lauren's homecoming.  

It was good that Lauren spent the day off of the monitor on Saturday. It allowed us to ease into Lauren being an untethered baby again.

Lauren napped all the way home and then settled into a serious play session when she got home.

We are so blessed that Lauren has beaten all the odds. Our beautiful baby girl is back where she belongs. God is good.

Every week we will still be headed back to Children's Hospital for appointments with the surgeon and cardiologist. Lauren still needs a lot of prayer even though she is home. Please continue to pray with us that the swelling in her heart goes down (it is still blocking much of the air access to her left lung), that her heart learns to work around the scar tissue that has formed, and in the end that her heart works just like any other child's does so that she has no limitations on what she is able to do. We know God has big things planned for her!

"For I know the plans I have for you,"

declares the Lord,

"plans to prosper you and not to harm you,

plans to give you hope and a future."

 - Jeremiah 29:11

THANK (IC)U

As per usual, Lauren spent the day smiling, playing, and snoozing. We got to go out for our walk but realized that it was really bright out. No problem.

There was lots of visiting as well.

A full day of smiles makes me think that she is doing much better!

There are so many changes in Lauren's behaviour since she had her surgery. She now uses her legs to push her backside around, kicks at her toys, reaches for anything and everything, and eats so much more. However, the most obvious change is her sleeping behaviour and for this I have to thank everyone in the ICU.

For the first 5 months of her life, Lauren struggled with going to sleep. She needed to be held until she slept and then placed ever so gently in her crib. My breathing would stop and I would freeze with my fingers crossed praying (literally) that she would stay asleep. Just as I was settling back into the couch, without fail, Lauren would beckon / bellow me back. Putting her down was often reminiscent of playing hide and seek as a child when my breathing seemed as loud as a scream and my heart was a beating drum. And how I cursed those creaking floor boards.

But that was before and this is now. When Lauren is tired she makes a little grumpy noise, we put her in bed, put a soother in her mouth (which she prompty spits out and replaces with her fingers), and hit the button on her mobile. Our next step is to leave her alone as she lightly bats the mobile a few times and then settles in to sleep. Who is this baby?

So thank you ICU. Thank you for saving my baby's life. Thank you for the amazing care that the nurses and doctors gave to her. Thank you for caring for her and letting her into your heart. And thank you for teaching her to sleep.