an update...

I've been told some of you are looking for an update ;) Now I know how those of you that have blogs that I've followed before don't always get to posting right away! Sorry it's been a couple weeks...

Weston is doing really really well! We have seen the home nurse a couple of times, we have seen the pediatrician and we have seen the cardiologist.

Yesterday we had our follow up with the cardiologist, Dr. Bass, who said that everything looks great! We got to get off the lasik (yea!!!) and we can officially do tummy time on the floor. Weston isn't a huge fan of that but we will keep working on it so he builds those arm and neck muscles that lead to crawling.

As of Thursday, Weston weighs 9 lbs 15 oz! Some of his newborn clothes don't fit anymore and I know that is a good thing but it's a little sad at the same time. We are in between since some newborn clothes fit, some are too small, but the 0-3 mo are a little big. We'll figure it out. Thankfully our cousins Axel and Else have given us lots of hand-me-downs to wear :)

We see the pediatrician again on Monday for Weston's 2 month check up! The last couple times we've seen him he has been very positive and thinks Weston looks and sounds great. I'm assuming Monday will be the same report. We will talk to the pediatrician about how much to continue fortifying Weston's milk and if we continue the Zantac for acid reflex. It's very nice not having him spit up all the time so it's hard to know if he still needs that med or if we can try without it, or maybe find a happy medium and work our way slowly down instead of completely cold turkey.

The nurse is supposed to come again today to see if we can be 'discharged'. Since everything went so well at the cardiologist's yesterday I don't see why we can't, but she hasn't called yet to tell me what time she is coming. I'm starting to think it wont be today after all.

Last weekend we had KME photography come and take some 'newborn' photos of Weston and some family photos. Doesn't she do a great job? She is the same person that did our maternity photos this fall, too.

Family photo

Rasmus and Weston are becoming friends, I think!

Weston's awesome alphabet wall that so many of you contributed to! Thank you!

A week later..

It has now (this afternoon) officially been a whole week home! We have stayed very busy with Thanksgiving, getting to church, getting groceries, doing laundry, doctor appointments, trying to organize and just feel like we are home! It's that feeling you have after you've been on vacation and finally get home...but we had a really long vacation.

On our way home from the hospital! He looked like this for awhile, then he fell asleep...the car seems to do that to him!

It has been fabulous to be at home. Weston is a very good sleeper and has slept 4 hour chunks a couple of nights. This is not the norm yet, but we'll take it. Most of the time he wakes up to eat and then goes right back to sleep once his tummy is full. If that continues, we won't complain.

Last Friday we had a doctor appointment in Monticello with a pediatrician. Thankfully the cardiologists down at the U/Children's had called him and updated him on the first month of Weston's life so we didn't have to answer QUITE as many questions. The pediatrician said Weston looked great, sounded great, and had gained more weight (7 lbs 12 oz)! All a good report.

Monday we had the home health nurse come out for the first time to check in and weigh Weston again. That is the biggest goal, to be sure he is eating enough to continue to gain weight. Yesterday he weight 8 lbs even! The nurse was also very pleased with Weston's coloring, his weight gain, his lungs sounded great, and how handsome he is :) (People all keep calling him that...guess he might get confused what his real name is!) We decided since he is doing so well the nurse only needs to come once a week so we'll see how Weston does on the same scale in another week.

Oh that tongue...but look, "So big!"

My favorite word....

today is DISCHARGE!! We got discharged this afternoon around 2:00. We are home and adjusting. We'll see how tonight goes ;)

No more tubes!

We had a great weekend! Weston was allowed to try bottle feeding at EVERY feed (every 3 hours, 8 feeds in 24 hours). Weston was definitely a trooper and did a great job working at bottle feeding before having to gavage the rest through his feeding tube. Saturday Weston finally got above his birth weight! He continued to gain weight Sunday and this morning stayed the same. They say that is due to the fact that we made him work a lot harder this weekend at his feeds. As long as he didn't go backwards, they are happy (and so are we!) Weston now weighs 7 lbs 6.98 oz.

Since Weston did so well with his bottle feedings, the NG tube (feeding tube in his nose) finally came out today! YEAH!! We have only had one feeding since, but Weston did amazing at his 1:00 feed. He is now offered 65 ml (before it was 55, which is still the goal) and he took 61! We hope the rest of the day continues to go this well so we can start discussing that "H" word...MAYBE we'll be home for Thanksgiving :)

No more tubes!! :)

Since the end of last week we have also been given permission to unplug his oxygen cord from his leg and go for walks. It still needed to be monitored while we were in the room at the end of last week, but this weekend they made the call to only spot check it! One less thing attached to our little boy!

We hope and pray the progress Weston has shown this week continues so we can begin our life at home. Thank you for all of your prayers and kind thoughts as we continue through this journey.

Big day!

Weston is already a MONTH old! Here we remembered to take a picture of his '1' onsies...we'll see if we remember every month to come ;) Won't it be fun to compare next year?

Weston got to take off his EKG leads this afternoon and get rid of the tele box they have been attached to. One more thing gone..he is almost wireless (in Jeremy's words)!

            
 
Weston is up to getting a bottle 6 times out of the 8 feedings a day. We did that Thursday and Friday so we will see if we continue that this weekend or if we get to offer him a bottle every time starting tomorrow morning. When the doctors come around in the morning that will be reassessed depending on if Weston continues to gain weight. It is a difficult balance to figure out how much to push him with the bottle in order to learn those oral skills, yet not to burn too many calories.

We have had an entire week of weight gain, which is awesome and in the right direction! The weight gain and feedings both have to happen before we are allowed to go home and this week we feel like Weston has been doing an awesome job of both these things!

Here Weston is sleeping in MorMor's arms. We are discovering he has a ton of fun facial expressions in his sleep and apparently could turn into quite the dramatic little boy someday...

Thank you for your continued thoughts and prayers. Weston is definitely on the uphill journey that we hope continues so we can be home soon.

Perspective

I have to admit, it's not easy sitting here everyday working on being patient to give Weston time to catch on to feedings at his own pace. It's hard when there is nothing I can really do in order to help him and we have two really good feedings, then a not so good feeding. I try not to get too discouraged.

I was reminded tonight that it could be much worse. I don't mean that harshly, but another Mom on the floor has her daughter here. They have been here a month more than us and they have another surgery set up tomorrow, as well as a plan for a G tube in order for her daughter to eat because she isn't catching onto feeding at all. She has 3 other boys at home and they live in North Dakota so she can't go home or see her husband and other kids more than every couple of weeks. It's all about perspective, isn't it?

As for Weston, he is starting to slowly gain weight and slowly catch on to eating from the bottle so he gets enough calories. It is still day by day to make sure he gains weight and isn't burning more calories than he is taking in. We did get to add a 5th oral feed today (that means he is offered a bottle 5 out of his 8 feeds) and hope to continue that into tomorrow. We don't want to do too many different things at once so he is pacing himself and we know what the variables are if something doesn't go as planned.

Keep praying Weston is on the up swing and continues to gain weight and catch onto this whole eating thing. They definitely go hand in hand as we take being here day by day. I hope you will take a moment to pray for the other family (and many families) that are also here dealing with similar situations, or things that can be considered much worse.

Another day...

Weston has been off oxygen for over 72 hours!! We are hoping that hurdle has been crossed and we won't have to go back on at all ;)

As for feedings, that has been a little more of a struggle for the little guy. Saturday he was given a 'day of rest' when it comes to how hard he has to work to eat. Because he is a 'heart kid', every time he eats, either nursing or from the bottle, it is like he is running a marathon, or at least a 5K. He has to work very hard to suck, swallow, breathe, while still maintaining his oxygen levels throughout his body. What the 'day of rest' meant was that for 24 hours, Weston didn't work at all to get the food to his tummy but received all of it through his feeding tube. His body still had to process everything and his stomach did fairly well at keeping everything down.

Sunday we gained weight!! It wasn't much, but it's heading in the right direction, so hopefully that means Weston's 'day of rest' helped his body not work so hard to put on calories. From Sunday morning until Monday morning, Weston was given one feed through his tube so he didn't work, and then the next time we offered him a bottle so he is still working on his oral skills. If he didn't take all the calories the doctors are saying he needs, then he got the remainder through his feeding tube.

Monday morning we gained weight again! 2 days in a row! We are leaving the feeding plan the same throughout today and into tomorrow morning when Weston will be weighed again to see if the plan continues. Until this evening Weston was doing a great job of keeping everything in his stomach but the last two feeds he has spit some of it back up. We are trying to pay attention to how much movement he gets after eating and seeing if that is why his stomach is upset or if there are other factors we need to be aware of. Everyone just wants him to get the calories he needs in order to gain weight. We will see how the feedings go throughout the rest of night and into tomorrow morning.

The hardest part right now for both Jeremy and Ellie is that we can't do anything to help Weston learn to eat or keep his food down, or to make this process go any faster. We have to let Weston take his time and learn how to do this on his own. It's not easy and either of us would do anything to help fix it if we could.

We had a Care Plan Meeting today where everyone was finally in one room at the same time. It was helpful but we still don't understand why it didn't happen a week ago when we first came upstairs. We partly feel like we've lost time and now, unofficially, will be here another week or two, still depending on Weston, but being realistic in his goals. It's not easy to think about staying another week but we don't really have an option.

Yesterday (Sunday), Ellie asked if we could put clothes on Weston since he doesn't have the oxygen tubes and most of the others are much easier to move. The nurses said that wasn't a problem so here are a couple pictures from the last couple of days of Weston wearing clothes!

His shirt says "See you later alligator!"

I wish it said "Aunties" even if his face doesn't show it.

We both got a laugh out of this one. Jeremy was holding Weston and once we put him back on the bed to change him, this is how he looked...not very swaddled, huh? lol

Thanks for the continued cards, gift cards, gifts of money, prayers, kind words of encouragement, and visits. They are all greatly appreciated and noticed. Keep them coming!

Time

People want an update: Well, I'll try but there really isn't much to say.

We are still sitting at the hospital with no exact date of discharge because every time we ask that question the answer is: "It's up to Weston."

He has been on and off the 1/32 liter of oxygen again in the last few days so that will continue as his stats show that he needs it. If he doesn't need it, we shut it off, if he drops too low, they turn it on until his stats go back up....on and off, on and off.

We had a frustrating couple of days with no official plan on how to help Weston gain the weight he needs and work on his feeding that has to happen in order to go home. Wednesday Ellie felt very overwhelmed with all the different opinions on what to do for feeding Weston and didn't know who to listen to. Finally on Thursday a plan was made and it has been altered a little bit last night after speech (who work on sucking and swallowing) but we've stuck to it and just have to give Weston time. The hardest part is we don't know how much time he will need before he will 'take off' and catch on to feeding and gaining weight, so here we sit.

That's about it. Still have those two goals: staying off oxygen and working on feeding. Continue to send the good vibes and prayers for Weston to continue healing and begin building up his stamina for feeding and for his tummy to handle the amount of calories he needs in order to gain weight and grow.

It's a waiting game...

Now that we are upstairs, or on the 'floor' as they call it here at the hospital, it feels great to be one step closer to home, yet it feels like not a lot happens around here most of the time. When we moved upstairs, Weston was given two jobs before we will be allowed to go home:
1. Wean oxygen
2. Work on feedings

As for number 1, Weston is doing really well. He was down to 1/32 of a liter of oxygen going into his nose and was off and on that since we came up stairs. It has been almost 24 hours since he has had any oxygen and his levels are staying in the 90% range. (They want him above 92%, yet a resident said that this amount of oxygen is so small "it wouldn't keep us here".)

Number 2 is a much slower process, which is hard to understand because it is something we will continue to work on even when we are allowed to go home. Weston has been switched to every 3 hour feedings which means Ellie nurses or we bottle, then we give him the rest through his feeding tube in his nose. They want him to be eating 55 ml every 3 hours at this point (but still have enough of a break in between to actually get hungry enough to eat!). In order to do our best job estimating how much he is getting from Ellie, she has to weigh him with a clean diaper, then feed him, then weigh him again and do the math (in kilograms) to figure out how much he is eating. This isn't an exact science, which is another reason it is difficult and can be frustrating. He is eating around 30-35 ml from Ellie, from what we can tell, so we just hope that number keeps going up as he becomes more coordinated and has more practice. Weston and Ellie will continue to work on this...but would love to hear of an approximate time to go home, especially when the nurses even ask if it has been talked about! Maybe when they come by for rounds soon, who knows...

Here is a picture of Weston this morning, sleeping away so I can type this ;)

Moving on up!

We haven't posted for a couple of days because nothing has happened. We've been sitting around, enjoying holding Weston, but just waiting for the 'all clear' to get moved upstairs. Once that happened, we were told there wasn't any room for him so we sat another day in the CVICU until yesterday afternoon, around 4:00 we were told we get to go upstairs!

The reason this is so exciting is because it means we are one step closer to going home. Out of the ICU and on our own a little more, but still being monitored. We don't know how long we will be here, that is determined by Weston and how well he does feeding as well as when he gets off the oxygen. He is on 1/16 of a liter for oxygen, but when we try to go off completely he doesn't do as well. We are hoping today to go down to 1/32 and see how he does with that, then maybe wean him off completely. The nurses say it seems like nothing to us, but obviously it helps him just enough to keep his breathing in the 95-100% range, where we want it. This means taking deep breaths and filling his lungs which he eventually needs to do on his own to go home.

Last night went well, Weston didn't nurse a lot, but he slept a lot! Which is a great thing to help him heal and to help him continue to grow. He gets fed through a tube for a couple hours so he is getting lots of nutrition, then they stop that for an hour and let Ellie nurse before feeding him again. Hopefully today that can go to 1.5 hours of feeding and 1.5 hour break to get hungry enough to nurse. We'll see what the doctor says. Again, he has to nurse to go home, so those are our two big goals for the next several days.

Thank you for your continued prayers and support. We are so happy to be moving up in the world and in the right direction towards home. I'll close with a picture of Weston sleeping in my arms yesterday: one of the best things I get to do as a Mom :)

Ups and Downs...

Today was fairly stressful for Mom and Dad. Jeremy went to work for a few hours while Ellie drove down to the hospital and sat with MorMor (her mom) for awhile, holding Weston. It feels great to be able to hold him again! Throughout the day there were a lot of doctors, speech therapists, occupational therapists, nurses, surgeons, ect coming in and out of the room. There were also a lot of plans that kept changing every time someone walked in, therefore: stressful.

Everyone was worried about Weston's right diaphragm being paralyzed, or sluggish. There was talk of re-intubating Weston which no one was excited about, then they ran more ultra sounds and x-rays and decided to see if Weston can work it out on his own rather than having to go back to the OR. Obviously, that is the hope so keep praying ;)

By the end of the day, nothing is going to happen at this point, we are just going to give Weston time to see if his body can figure it out. He had lots more tubes removed today as well to see if those were causing some of the issue. Now he has his pacer wires out (they hadn't been used for a few days), his chest tubes out, and his umbilical line (through his belly button) out! It was a busy afternoon for Weston! It is so much easier and nicer to hold him again without all these things on his body! The covering over his incision has also been removed so it's something we have to be aware of and careful of not moving him too much so that doesn't stretch.

Before we left, we got a couple of good pictures of Daddy holding Weston as well as an attempt of the 3 of us in our new little family :)

            


Overnight went well again. They started feedings of breast milk through a tube so hopefully that will continue throughout the day today and maybe Ellie can start nursing again. It's going to be a slow process since Weston has to re-learn how to suck and swallow, but hopefully now that his heart is fixed he wont have to work so hard at the breathing part at the same time!

We are trying to be very optimistic yet realistic in our timeline of Weston getting better and getting to come home. Keep sending good vibes that he handles the feeding well and hopefully the oxygen level can start to come down. That happens, then we can go upstairs to 'the floor' which is one step closer to home!

It is Getting Better.... It is Getting Better Every Day.

Yep. I just quoted the Postman. Things are looking up for Weston. Though there isn't a ton to report we have had some small successes over the last 48 hours. Weston was still intubated yesterday as most of the swelling had not gone down. Today that set of tubes was removed and Weston was breathing mostly on his own. The right upper lobe was still a little stressed and not quite fully inflated and they think they remedied that at this point in time.

With the breathing tube out there are some smaller steps in the right direction that followed that. They took the catheter out today, as well as the IV in the groin area and started taking him off some of the fluids and medications that they had been giving him.

The nurses today were wonderful! We had a great question and answer time today as he sounded really raspy and not quite the normal baby sound. In fact the comment was that he sounded like a cat. Most of this is normal. Although there are some fluid issues in the lungs still that had the nurse a little unsettled. Hopefully with the oxygen and the suctioning out of fluids he will get off of the before to long tonight.

The next step is hopefully tomorrow they will remove the chest drain tubes as well as the UVC (Or umbilical line) that has been there since day 1. They seemed rather optimistic assuming that he still clears off a bunch of the fluid still in his body. The potty dance can still be done for Weston if you are looking for something to do.

We were grateful that he looked like the baby we saw in the beginning. Ellie will most likely be staying down there from this point on and trying to get the nursing thing down again. It sort of depends on what he wants to do and how much stress he can handle.

The nice thing is that he is back in mom's arms where he belongs. This time it takes a minute to get him there rather then 25. We are glad that he is looking much more "normal" and happy that things are on the mend. In the next few days we are hoping to transition up to 5th or 6th floor and get one step closer to getting out of here. 

The other perk of the weekend was Jeremy getting to go to Confirmation at SSLC! The joy of seeing 19 young people step forward in their faith journey was awesome to be a part of! I am proud of each of them and their accomplishments! Add that on to seeing our quirky puppy helped smooth the day out! 

All in all. We are happy with the way things are going. Hopefully in the next few days/week we will get to bring Weston home to meet his big brother Rasmus! Although this is really a dream... we can wish for it correct?

We do apologize for all of you that have been trying to visit over the last week but with all of the tubes/wires/ struggles mixed in the week we really were not able to handle a lot of visitors. If you would like to come visit over the weekend let us know. We would love to have company now!

A Day of Rest...

Sunday should be restful, right? Weston took that seriously and had another laid back day of resting and recuperating. He is doing very well and is definitely slowly getting rid of all that extra fluid. We took a picture yesterday and today and once we compared the two, there is a HUGE difference in his face, which is awesome! The goal is to hopefully extubate (take out some of the tubes!!) tomorrow. We'll let you know if that actually happens or not.

Weston received a 'bath' today which both Mommy and Daddy helped the nurse with, around all the tubes. After his bath, the nurse prepped Weston to be held. Mama got to hold Weston for almost 2 hours! There are still a lot of tubes so Mama just sat while the 2-3 nurses helped place Weston in her lap and then helped pick him back up again. It felt wonderful to be able to hold him again. Hoping we get to do that cuddling again tomorrow.

Keep praying that Weston continues down this path that he has begun to get the fluids out, to get better, and to get rid of the tubes!

So much better!

Thank you to everyone who did the potty dance for Weston! It definitely helped and seems to be continuing to work. Weston still has some extra fluids in his body that he needs to pee out, so feel free to keep dancing :)

Saturday was a much better day. Weston looked a little more like himself instead of being so puffy, his chest was closed early in the morning so the doctor is happy with how he is healing, and therefore his chest is much cleaner and a smaller gauze is covering his incision.

Weston is responding appropriately to the various drugs they are giving him and starting to wean him off of. We are hoping for another day where drugs can be slowly lowered until they are taken off, and maybe even some more tubes can come out.

Thank you, again, for all the continuous support, prayers, and kind words. We know there is an army behind Weston and the two of us to help us get through this process.

We don't want to have too many pictures right now since Weston is so puffy and full of tubes, but Mommy got him to hold her finger yesterday, so here is a picture :)

Pee Baby Pee

Yep. I used it. Hoping that Weston pees a lot over the 24 hours. With all of the fluid added to his system to help regulate his blood pressure there is something going on that isn't allowing the swelling to reduce. We are hoping with the combination of drugs that he has been put on that things will start flowing again and take the water out of his skin.

After a rough day/night yesterday Weston is doing well. They regulated his blood pressure to the best of their abilities but the things they put him on mess it up again. We are still hoping all works well... but that can only be known in time. the rest of his vitals and things have been to the positive.

We know that he is in there somewhere. He squirms, and moves and every once in a while opens his eyes to see. They are regulating his movements and the pain as much as possible. We hope for the best and that he will continue to improve.

Thank you for the prayers. We have both been moved by the support and the amount of people constantly showing their love for him. We see the posts on facebook and we know that we are not alone in this process. Though the road to full recovery is a long way off we are grateful that each of you are a part of his life and ours and know that you are helping to shorten that time. Thanks for helping us and for helping him.

We are contemplating and pondering the idea of trying to keep Ellie off of work until Christmas so that way she can bond and spend time with Weston as best she can. Her maternity leave will end about the time that Weston is scheduled to come out of the hospital. That makes things a lot harder for the two of us and to settle in to any sort of routine at home. We will see what things come of the future and how we can best make things happen.

We love each and every one of you. We cannot say thank you enough to our families, our church, and our friends for the honest love and support you show. Thanks for being there. Though I cannot thank every person individually I thank you all for your ongoing support and want you to know that thank you will never be enough. BUT... that being said... THANK YOU!

It's hard to put into words.

I am really not sure how to type this tonight. It is hard to put into words what is going through my head tonight as we saw Weston after surgery. It is hard to see your child in a position such as his with as many tubes and wires hanging from him. If I could give him my heart tonight and take away the pain I would.

After a 5 hour surgery Weston came back to the room for "recovery." Although the nurses assured us that things were normal, Weston began another battle. He couldn't get his blood pressure regulated. The nurses proceeded to give him platelets as well as lots of blood to get the pressures to even out. Things continued to be a struggle for a few hours. Mom and Dad went in to visit him and the nurses kept reassuring us that things were normal. They finally figured it out about 4 hours later when we called to check in again.

The second time we called they informed us that Weston woke up from his medicated sleep and had his eyes open, and was moving his arms. They re-upped his meds to make him sleep some more. The hardest part about this process is knowing that he was awake.

Weston is in a world of hurt currently. We are both struggling because as of right now we can't do anything to help. We both feel helpless and hurt for him. We know that there is nothing we can do... but we don't know what to do about it.

Your continued thoughts and prayers would be helpful if you can. It is hard to see your child with their chest open, and wires running all over their body. My heart aches for parents who have to endure this.

Surgery News

Well, Weston is scheduled for surgery tomorrow morning at 9am. Depending upon how the surgery before his goes he will be in at 9am. We heard from the surgeon today what they plan to do, how they plan to do it and what will be coming in the days to follow.

Weston will be in surgery for somewhere around 5 hours tomorrow. Mostly to make sure that everything works like it should and that he gets back up to normal rather quickly. That is a long waiting time for mom and dad but we know we can get through it.

Once Weston is back in the room we have been warned that it may be a little disturbing. They showed us pictures of other kids and surgery things so that we can be mentally prepared for the worst. Hopefully things will be easy but we aren't holding our breath. If you want to visit him in the coming days please note that it may be a little hard to see.

Weston most likely will be sedated for a few days and then the recovery process starts. They told us today that most likely he will need to be in the hospital for about 2-3 weeks depending on how well he recovers. We are really praying that things go smoothly and are mentally preparing ourselves for being in Minneapolis for that time.

Today was a good day again however. Weston had some family come to visit and wish him all the best tomorrow. We are so incredibly grateful for good family and the blessings that come with it. Pastor Dave came to visit today to and said a prayer with us all. We both are really moved that he has been so willing to come be a part of the process for our family.

The 3 generation shots that every family should have! Again... we can't say it enough... we are blessed by our family at home as well as the church family that is surrounding all of this in prayer. We feel the out pouring of love and affection from each and every one of you! We will post tomorrow how things went with surgery... but most likely no photos.

I am so glad to have the family that we do. We will take the heartaches in stride and know that Weston is already strong enough to pull through! Thanks for keeping us in your prayers!

A rough day...with bright lights.

Well, we knew the day would come. We found out today that Weston will be having surgery on Wednesday. As I am writing tonight I am watching a beautiful baby boy sleeping. Man he is handsome. We knew it was going to happen, and we knew that one day he would have surgery. Sometimes the waiting game is harder than it seems.

Mom and Dad are taking it pretty hard. We know that Ellie did great through hers and that Weston will do great through his surgery. The hard part is just waiting until you know more. The doctor was not available for the last several days and after hearing that he would be today... and not seeing him we finally did something about it. They called the doctor on his vacation to find out that he had given the team an answer before he left on Thursday... they just didn't get the message to us. So we finally got the correct information and now know of the plan.

We saw pictures today of what to expect when he comes out of surgery... hard images to see but helped to take away the shock value when we get to see him after surgery. The hope is that things will go better than planned.

I hadn't realized how hard it would be to finally put the pieces together. To finally know that Weston will be having surgery, and that healing can begin sooner rather than later. I also never realized how much love you can have for something you barely know. (Jerry and Tami... you were right!)

The blessing and shining light for the day came tonight when we went to supper. We sat down to eat at a pizza place right up the road from the hospital and while eating someone came up to us and gave us some money to cover our supper. I honestly and deeply appreciate the gesture. That random stranger made the day a little better. It also took away such a lost feeling that we have both had... I don't know why... it just did. So thank you to that person... the blessings you gave..were downright amazing.

I will post more in the coming days...again..thanks for the prayers and notes. It has gone a long way in a frustrating and heartbreaking time in our lives. Thanks for keep us there.

Don't Sweat the Small Stuff

Amy came to visit today. Even with a wounded hand!

Molly came to visit as well!

I opened my eyes just for you!

Today was a good day. It started last night with a good nights sleep. Dad got the chance to try out a little Kangaroo care action last night. Turns out I don't suck as bad at this fatherhood thing as I thought I might. Weston ate and ate until he was full and let mom sleep for a solid 4 hours last night! Combine that with some good feedings and lots of love...today was a good day! 

We had lots of good reports from the amazing nursing staff and they keep telling Weston that he is a handsome little guy. He pretty much just smiles and flirts and then falls back to sleep. 

Mom and Dad took some time to get out this morning. We were glad we could get some free time to process, talk and walk around MOA for an hour or so. It is amazing how much a good friend stopping by, or time away can make a difference. Weston got lots of love and attention all day. Including Grandparents and friends. We are grateful for the little visits and are reminded today that small things are blessings. 

Tomorrow we will might have a decision about surgery in the coming days. I have been asked by a number of people about his surgery and what things are going on. If you want to know the situation I recommend this site. It has some good info and explains the situation a little more clearly for you. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002104/ 

We are  waiting patiently to hear more and to get to the bottom of the situation and find out what the next steps hold. Weston is scheduled for surgery on Wednesday regardless of the decision to have him stay for surgery or go home. It is all dependent on 1 doctor...who is out of town until tomorrow. 

Thanks for the thoughts! If you want to come visit...let us know! We love to have company!

Hurry Up...And Wait.

Today was a great day.... but also a frustrating one.

Weston had a little bit of a rough patch last night. He wanted to be awake when mom and dad needed some rest. He mostly just wanted to scream all night. Nursing has had some successes and a few troubled spots. Mom is doing the best we know how. Finally met with some great staff at UMMC today that had expertise, wisdom and insight. I have to say that the blessing in this huge process is the Nursing staff, and Charge Nurses. My hats go off to anyone that is nurse in any hospital. YOU are the reason this experience has been manageable. Thanks to the staff at UMMC for what they have done. We are grateful for good nurses.

Mom is doing well. The only hope in all of it is that she gets some good rest. Between Weston's crying the last two nights and having to deal with "Momma" issues.... it has been a hard couple of days. The blessing today was that Grandma Ardis came by and offered lots of help while Jeremy took a HUGE mental break.

We are grateful for good Grandparents tonight. Lee took us out for "Breakfast" or as some might call it lunch with the old people. We are grateful for the love and support we have been given through the family we have. I can't imagine where we would be without them.

Weston's surgeon is out of town or on vacation. So while they told us last night we would have an option to make a decision if he should have surgery asap, or wait a few months...the final call is up to the Surgeon.... so we wait until Monday or Tuesday. The way things are looking right now if he has surgery it will be on Wednesday as he is booked on the calendar already. If he doesn't...we don't know when that will be.

I hopefully will have more pictures in the coming days... but most of the ones are the same. He pretty much eats, poops, and squawks all day long. If you would like to visit you most certainly can... we just ask that you call first to let us know you are interested in coming.

Dad is doing ok. After having the realization today that there is a reason I don't carry a hand gun... I figured it would be best if I went home. So I did. Took a few hours, did some laundry and just took care of me for a few minutes... was enough of a break and a life saver. Now I am back with a new attitude.

Thanks for the continued prayers and support. Though my patience is wearing out... I know I can make it because I am not in it alone. I am so very blessed by my family, church family and friends. Thanks for helping us get through this.

A New Day

Well, today is a new day. Weston is still making great progress. We are incredibly happy that he is doing as well as he is. Your prayers are still appreciated. He has been nursing... very slowly... but it seems to get some food in his tummy. The surgeon today was a little frustrating to be around as he still hadn't look at the results at morning rounds today.

There are a few things rolling around with the surgical staff here. 1. That Weston and mom would be going home sometime soon so that way Weston can grown, recover, and hopefully get bigger before surgery in a few months. 2. That Weston would need surgery which is scheduled for Wednesday. Both of these options carry with them risks and challenges. We are hopful for the first option as Ellie would be home with him for almost all of her maternity leave.

Right now the veins are unobstructed. Meaning that everything is registering well... its hard for him to nurse and just be alive at the same time because of their position though. So, they are taking things in stride. The nursing staff has said repeatedly that he is one of the healthier kids on the floor. YAY for that!

Mom is doing well. She was discharged today and seems to be doing quite wondefully well considering. Spending another night in a hospital bed..this time in Weston's room! We are grateful for all of you in this process! Keep the prayers coming!

Little Feet

Thanks for the amazing prayers, encouragement and support. We couldn't do this without knowing that lots of you are supporting us. Thanks for the wonderful blessings and for helping us get through this process. We are grateful for each and every one of you. Thanks for what you have done and continue to do.

Weston has improved greatly throughout the day. We had lots of great family visits today to keep us company and help lift our spirits today. We have made HUGE positive strides and today actually took a bottle and nursing rather than just food through an IV.... which is HUGE gains for us! Sometimes its the little things that help get us through!

Mom is a champion! I am proud of this beautiful mom and she has been doing so well throughout the entire process.

We wait with baited breath as the days progress and are excited to see what may come for the future. Thanks for continuing to pray for all in this process. We couldn't do it without you!

Introducing...

Weston Michael Hallquist
Born Tuesday, October 16, 2012
12:56 pm
7 lb 3.7 oz
21 inches

We were given immediate tubes on our face and already by the time Mama and Daddy went to bed last night, some of those were gone (as seen in the picture..don't you like my hat, too? The hospital gave it to me)! Lots of tests were done right away within the first few hours of his life yesterday and another CT scan is being done this morning. We don't know details about the next step yet but will try to keep everyone informed once we do.

Thanks for the continued good thoughts, prayers, and kind words.

5 Days!

We had another doctor appointment this morning down at the U of M. Everything still looks great...baby is 6 lbs 10 oz so is a good "average" size. He or She will continue to grow for only approximately 5 more days until I am induced on Monday morning. The goal is just to break my water and see what happens :) Hoping my body continues to help the process along :) The doctor said it's doing well so far.

Monday will be an early morning. We are to report to the U by 7 am to get the process started. I have accepted the fact that whatever happens is what will happen, as long as I have a baby at the end :) (which we all know I will).

Lots to finish up in the next 5 days to be as "prepared" as you can be for a baby to arrive!

36 1/2 Week Photo Opportunity

We had maternity pictures taken today by Kirsten Eitreim of KME Photography. Didn't she do a great job?? She even got Rasmus in some! Here are a couple of our 'sneak peeks'. We had a lot of fun being at a beautiful park on a gorgeous fall morning, with a few colors starting to change!

I'm 36 1/2 weeks in these photos and still feeling pretty good. I'm definitely exhausted by the end of my kindergarten day, but that's to be expected, right?
Nothing new is happening in the medical world, it's all about waiting at this point (and waiting a couple more weeks sounds like a great idea!). Jeremy had the realization that it is now under 20 days until they want to induce and have Pip arrive...man, I guess I better pack those bags ;)

Weekly Appointments

We're already down to the weekly appointments! CRAZY!! We have 4 weeks until induction date!

Today's appointment was in Maple Grove so Ellie didn't have to take any time off and even got to school within 5 minutes of her 'expected' time! (Don't worry, she was at school an hour after she had to be so she made up that 5 minutes without a problem.) She was pretty impressed that since we showed up early we got in early. Hopefully that will happen again the next couple of weeks, too.

We had the BPP (Biophysical profile) today which is an ultra sound that looks specifically at the heart rate, muscle tone, movement, breathing, and amount of amniotic fluid around Pip. My understanding is I will have another one for the next two weeks again as well since we are considered 'high risk'. Everything looks good! Pip is still head down and moving all over the place!

Continue the good thoughts and prayers :) We thank you for all of them you have already sent our way!

Processing...

I admit, I am still processing everything we learned today. We were able to meet a lot of people and see the Labor and Delivery area, the NICU, and the CVICU (cardio vascular intensive care unit) where Pip will be staying at some point. We thought we would have 'wait' time sitting around between appointments today and boy, that didn't happen! My mom came with us today to try to help us ask more questions, have another set of ears to hear what we hear, and someone who has gone through this before. Not an easy job. (Thanks, Mom!)

I'll try to start at the beginning...

First, we had (another) level 2 ultra sound. Everything is measuring 'perfectly' and Pip weighs approximately 4 lb 11 oz. Pip is measuring right on schedule as well (within the one day my due date has moved, no big deal) and is head down.

Before we had our fetal echo, we met with a coordinator, Meg, who answered a LOT of our questions right away as well as explained how the rest of the day would go. She was very helpful and stayed with us most of the day so she also heard what we heard and can answer questions as we sit here at home thinking of more. This is different then our first initial care coordinator who provided more questions than answers.

After the echo, we met with the same Dr. again and heard much of the same thing we heard at 31 weeks (3 weeks ago). They are still seeing the same thing in the echo that the veins aren't all going to the right place (Total Anomalous Pulmonary Venous Return), which means Pip will have surgery...we just don't know when. That part is very up in the air and will be until Pip is delivered (how soon will depend on how Pip is when he/she is born and the results from various tests they will do right away).

We met a high risk OB/GYN who will very possibly be the Dr. that delivers Pip, but you never know how that works :) They are suggesting that we come down there at 39 weeks to be induced so I don't go into spontaneous labor so far away and so we don't go overdue so the baby has meconium aspiration. They are telling us the combination of the heart defect and then adding meconium aspiration would not be good for the baby. We had a very serious discussion about my wishes and how being induced is not my first choice. They did agree that we can try any and all 'natural' ways to induce before pitocin. This however, came after quite a bit of emotions regarding not trying a chemical inducement.... when that happened we then were given a second option.  Guess I'll be looking into naturally inducing myself before that point! As I said, I'm still processing this information so I'm not 100% sure how I feel about all of it yet.

Next we had a NICU consult. We met a Dr. who will most likely be part of Pip's team once he/she is born and help determine how soon the surgery needs to be completed. He talked to us about the logistics side of surgery, tubes, and recovery. We heard again that it will be a minimum of 2 weeks, could possibly be 3, depending on how soon after birth surgery happens and again how fast Pip recovers (none of which we know until they arrive).

The Dr. also explained how the recovery portion will most likely go and then gave us a tour of the labor and deliver area, the NICU (where Pip will probably be immediately after birth if surgery does not happen immediately) and the CVICU (where Pip will be after surgery). Hopefully we will remember when we go back ;) We did find out where we come if I am in labor (without being induced), where to park, ect ect...all those logistical things ;) which feels good to know.

We also learned there are options of places that we can stay while the Baby is in CVICU even after I am a patient, so hopefully we wont have to be driving back and forth EVERY day.

Mostly we gained a wealth of information that has helped us process things a little easier. The team of doctors at this appointment were far more helpful than the previous two. Thanks for your prayers, the well wishes and for sending us your best in this process. We are grateful and blessed because of it already. We don't know what the future will hold for sure but at least now we are starting to get a better handle on it.

31 Weeks!

Well, we went back to the U of M today for another fetal echo appointment. The doctor told us the same thing as last time. Delivery will take place at the U of M and surgery for Pip will take place shortly after. We don't know details for either of these things until the date approaches and Pip is born. Still hoping for a natural birth over a C-section but it is too early to determine that. Once he/she is born, they will know if surgery will be immediate or if it will happen within so many hours. (The example the Dr gave is if Pip is born in the evening, they will see if they start surgery then or wait until morning.) Again, as long as Pip stays inside (as close to the due date the better) s/he will be just fine.

We learned that Pip is no longer breech, which is a good thing as long as he or she stays in that position! Is it normal to stay there from now on or not with 9 weeks left....?

The Dr. would like us to switch our care all to the U by the time I reach 34 weeks. This is difficult when it is so far away and they only have appointments from 8-4:30. Ellie has all of her appointments made up to 39 weeks with her regular OB in Monticello, but we're not sure if those will all still happen. She isn't giving them up yet because they did meet with another nurse who specializes in helping families and she was more hopeful the regular OB will be able to see me longer and share the information so we don't have to take so much time off before Pip arrives.

We did get some of our questions answered, but still have some yet to be answered when we go back and/or have to wait and see once Pip comes. We go back at 34 weeks to get a tour of the NICU, have another fetal echo, and another level 2 ultra sound. They just want to double check everything else looks good like the kidneys, brain, spine, ect.

One big piece of information we learned is that Pip will be in the hospital for a minimum of 2 weeks after surgery.

Feel free to keep praying :)

Pip

I thought I would start this blog to keep friends and family updated about Pip. 

Pip is due October 23, 2012.
We do not know if Pip is a boy or a girl, and won't be finding out until s/he makes his or her appearance in October (or November).

On July 13th we learned that Pip will most likely (98% chance) need heart surgery when he/she is born. It was a lot for both Jeremy and Ellie to take in, even though it is (we think) the exact same thing that Ellie had 28 years ago when she was born.
For those of you interested, it is called Total Anomalous Pulmonary Intervenous Return.

After some time to process and some thinking, it is a good thing to know ahead of time when we can control where labor and delivery will take place as well as prepare ourselves for this to happen, unlike my parents when they were ready to take me home and then weren't allowed to but instead had to rush to a different hospital.

Previous to getting pregnant, Ellie went through various tests to be sure her body could handle being pregnant. There weren't any issues, and during that time they also told us it was a 5% chance that a baby would have any heart problems that Ellie had. Obviously, either they don't really know or we fell into that 5% and this must be hereditary, which we didn't know before.

We still have a lot of questions that we hope to get answered when we go back to the U of M/Children's on August 22nd for another fetal heart echo and who knows what other tests ;)
As long as Pip stays inside Ellie, and continues to grow, the better off he or she will be when they are born and need heart surgery.

Since there isn't much we can do right now besides wait and try not to worry, any prayers are welcome :)