At Home and Doing Great

Quinten arrived home on Friday afternoon (5 days ago) and has been doing great at home. Eating well, and sleeping alot. He's a very easy-going baby. We sure are enjoying him and Big Brothers Ethan and Caden have been helping, and loving him. Its been very special to see them with him (we'll ignore the time that Caden jumped over Quinn while laying on the floor in his boppy. He didn't mean anything by it, probably just thought he was part of the obstacle course).

The boys are getting anxious for Christmas to arrive. Our elves from the North Pole (Jingle and Jangle) arrived a few days ago, and Caden and Ethan love waking up in the morning to see what sort of mischief they got into during the night.

I never thought it would be so special to have a baby at Christmas time - but I was wrong!! Makes the holidays seem more special and we count our blessings each and everyday. We all can't wait for Christmas Day! My grandma Bohlmann even came for a visit to meet Quinn and we were able to snap a photo of 4 generations of our family - how very special. These moments don't come along very often for us.

Attached are a few recent pictures of all 3 of the boys. We are doing great at home.

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What's On the Agenda for Today?

Another busy day in the NICU for Baby Quinten. It doesn't take much to get admitted to this place, but its like Fort Knox trying to get out and get home. These babies sure do have to prove themselves before they can be discharged. All kidding aside - we are so blessed to have Quinten here, the care that he has been given these past 7 days have just been phenomenal and we are very comfortable

that he is ready to come home tomorrow!

At Rounds this morning the doctors told us that he had to accomplish the following things today, in order to be discharged:

1.Continue taking 100% of his feedings by bottle - and if he misses one, then the clock starts over for him and we're here for another 2 days
2.The feeding tube can be removed today (it was pulled this morning and it felt good for him I'm sure)
3.Complete his 90 minute Car Seat test - hooked up to monitors including the Pulse Ox he has to sit in his carseat without any stats dropping (he completed this - but it is obvious to us that any scrunching, or neck laziness - his Pulse Ox is affected. We had to have 5 blankets wedged in, under and around him to keep his airway in line and unobstructed)...looks like I'll be riding in the backseat for awhile and no long road trips for us! -- He PASSED!
4.Complete his Hearing Screen (he failed in Bloomington) -- He PASSED!
5.Complete his Eye Exam (babies with DS can be born with cateracts or have muscular eye problems) -- He doesn't have cateracts, but needs to follow-up in a month with the Opthamologist.
So - we have been very busy today. All good news - plus, his Aunt Heather arrived last night from Arizona:)

Like I said before - we are thankful that we came here to Childrens. As scary as the NICU seemed, we have learned so much about his health already and things that we need to keep an eye on. We have alot of Specialists to see after we go home to follow up on his heart VSD/PDA, his elevated Thyroid results, his eyes, and of course all of that Physical/Feeding/Speech/Occupational Therapy that he will need! We are going to be very busy. But it will be all worth it, for our little miracle baby -- all packaged nice and perfect in his little itty-bitty body!

XOXO,

Mandy



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Feeding Update - So Far, So Good Today.

After a very rough night of feedings, and watching my little guy struggle with the bottle and then have to watch him get tube feedings afterwards - he has finally turned the corner, I think. Our prayers were specifically answered to help him along with his feedings!

Yesterday, the feeding therapist changed his slow-flow nipple to a very slow-flow nipple, because he was "gulping down" too fast, which can cause him to choke or aspirate into his lungs. Turns out that the new nipple was really slowing him down in his feedings - he was having to work extra hard just to get milk, and that just tired him out and he gave up taking sometimes only 30 ml - when earlier in the day he was taking around 45-50ml on his own. The night nurse and I made the decision to go back to the old nipple, and he improved with each feeding.

By 630am, he took for the first time, his entire 60ml feeding by bottle on his own. At 930a - the feeding therapist came in to watch him and I expressed my concerns with her and she said it was fine to switch back, and just make sure we help pace him. At 930 and 1230 he took all 60ml on his own!!! So that is a tri-fecta so far...we hope that he continues throughout the day.

Whew! What a night of stress and frustration - I feel much better again today. Let's hope he doesn't do anything else silly today.

Thanks for the prayers sent up last night! God is good.


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Minor Setback (Hopefully)?

Today was an exhausting day for Baby Quinten. At 2:30am, he increased his feeding to 42ml, by 8:30am he was up to 55ml. After rounds today the doctor says that at a minimum he has to take 55ml-80ml at each feeding for 2 days (and has to complete these within 20minutes), in order for him to be discharged and home by Thursday. I was rooting for him all day long - but the truth of the matter is, he did struggle with this expectation. Sometimes he'd make it, and sometimes he'd fall short of his goal. He had a rough day though -they tried getting a vein this morning for lab work, and he was stuck 8 times before they gave up. Then he had a photo session later on in the day which tired him out, and lastly he had his very 1st nursing session with me. All of these things combined wore him out and he was never really awake-awake for his feedings, making them very long, and a struggle to get his required milk amounts. Only one time today did he pass with 57ml, and the other times he came very close (52ml, 47ml).

The day nurse said that we made enough "excuses" for him today and that she is concerned that he's not getting enough calories to gain weight. Therefore, tonight he is getting a feeding tube which will help supplement his feedings if they continue to fall short. He's getting it placed right before his next feeding.
At this point, it doesn't look like we'll be coming home on Thursday afterall. We are disappointed - but hope that this is only a minor setback.

We really could use some specific prayers tonight - specifically pray for Baby Quinten to have the strength to keep up with his feedings throughout the next 5 feedings before morning and prove to everyone that he can do this, and that he's ready to come home.

We just have to trust in the nurses/doctors that they know what is right for him, and if he's not ready to come home yet - then, he's not ready to come home. We have to take our own parent emotions out of this and insert medical advice and know that he'll come home when he's ready.





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I've Had Visitors!

Yesterday was visitor day!! Grandma Jill came, Michelle & Chris Arbuckle, my two brothers (Ethan and Caden) came with Grandma and Grandpa Bohlmann. I was held so much and loved by everyone.

Ethan and Caden thought it was pretty cool to do the 2 minute scrub in, as required when coming to visit me. It took a little convincing to get Caden to wear the mask over his face, but big brother

Ethan was all for it! Finally, Caden decided that he wasn't going to miss out on his chance to meet me and hold me - so he complied with hospital rules.

We've had a very busy day with meeting with all of the therapists (feeding, developmental, lactation) and specialists (cardiologist, geneticist, and developmental pediatrician) -- so far all of the meetings have went great. We are being bombarded with lots of information and follow-up appointments, but we are taking lots of notes. Overall, Quinten is doing amazing. He's working really hard to get out of here. The doctors think that we might even be home sometime Thursday if he continues working his way through his feedings and gets up to the required mls per day. So far, he's been doing great. He even got off the Pulse Ox monitor today and his IV came out - so he's feeling much better having those 2 things on him.

We are blessed and we are feeling much better about things.


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I AM DOING SO GOOD HERE IN THE NEW PLACE!

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Quinten is Settled In at Children's Hospital

Well, we got Quinten settled in at Children's yesterday. He arrived at about 10:30am, and we all came up later in the afternoon to give him a chance to get evaluated by their doctors. He arrived on oxygen, but as part of the assessment they took him off the oxygen to see how long he could last until his Pulse Ox dropped. Guess what?? He's never been back on the oxygen!! He's been on room air this entire time - 24 hours and he maintains upper 90s%, which is just wonderful. God has answered prayers specifically for getting him off the oxygen. The nurses here joked that sometimes they just want that ambulance ride over to Peoria. He has certainly improved all ready and looks great!

Next step was to work on his feedings and make sure he can maintain his oxygen levels during those. He is doing well on those and Kevin and I have been able to give him his bottles at every feeding. We are even changing his diapers now and really caring for him. In the NICU every baby has their own private room so I am able to sleep in the same room with him, and get up with him for his feedings. He woke me up right on schedule last night just about every 2-3 hours saying "I'm hungry mama." Kevin was able to get one of the "Family Suites" last night too and was able to sleep in a real bed again and watch some TV(they are awarded each day depending on how sick your baby is).

We feel that although yesterday was an incredibly hard day, that Quinten is in the right place now to assess all of his medical needs. They are looking at anything and everything - he's having lots of bloodwork, EKGs, eye and hearing exams, etc...both for his current condition, but also looking at things associated with the Downs Syndrome. His care has been excellent. They have found a few other things that we are watching closely right now (e.g. jaundice, low platlet counts, some elevated number that is associated with kidney function, he has a very low resting heart rate - so he had an EKG done last night, and we found out that in adddition to the PDA with his heart, he also has a tiny VSD that wasn't told to us in BLoomington).

We meet with a series of specialists on Monday - nothing much happens on the weekends around here. So, it looks like we are here for the duration. I will continue to stay here - but tonight Kevin will go home to stay with the boys and get them back on their school schedule.

We even get to have some visitors today! We are allowed 4 people in our room at a time, so he is going to get some lovins' today and people are going to finally get to see him:) We are excited to share him with our loved ones.

XOXOXO,

Mandy



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Quinn is Being Transferred Today

Just wanted to give a quick update before we head out today.

Quinn's Pediatrician put in orders today to have him transferred over to Peoria to Children's Hospital NICU. His oxygen stats aren't improving and he just wants him to be over there with the Specialists so that he can get the care that he needs. Its not an emergency situation, just something that needs to be done.

Of course today has been an incredibly hard day for us, we are disappointed, sad, and scared - but hopefully we'll get this all figured out soon!

More information to come later once we get settled in at Children's. Please lift Quinn up in prayers today and specifically ask God to free Quinn from his breathing issues, and get his pulse ox up to where it needs to be.

Love to all of you,

Mandy



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Quinten William Arrived Safely Into This World!!

Well - everyone guessed that he'd be a December Baby....but he proved us all wrong. Quinten "Quinn" William Chadwick was born on November 30th at 10:54pm. I went into labor at home that evening at around 6pm and stayed home until a little after 8pm, after my parents arrived to take care of the older boys (that sounds weird). I was admitted to the hospital at aroun

d 8:30, and I was dilated a 5-6. From there things moved pretty fast as we suspected. Once the doc broke my water at around 10:00pm - I was ready to push at 10:45pm...and yes ladies, you can hate me now - I pushed 1 1/2 times and he was here! My mom got to be present at his birth, and I didn't even give her much of a show:) He came into the world screaming!

As he was layed on my chest - I was checking him out for evidence of that cystic hygroma. He does have alot of extra skin on the back of his neck, but Kevin and I were both surprised at the amount of it. Obviously that hygroma was huge - a reminder of just what a miracle he is! His face is so chubby - his cheeks are irresistibly pinchable and kissable. He has a double chin to match his chubby little body. The nurses can't get over the size of his feet and "manly hands." He is just absolutely perfect and adorable! He did very well and got good APGAR scores. But then his oxygen saturation levels began to drop right after birth, so they told us that he needs to go down to the nursery for observation and some oxygen. I got to hold him one last time before they took him - but no one else (not even Daddy) got to hold him that night.

The first night was exhausting - he had to stay, and still remains in the nursery under an oxygen "hood" (See pics). He does sustain his oxygen levels for about 3 hours now at a time without the help of the hood, but his Pediatrician says he needs to be able to be without oxygen assistance for 24 hours before they'll consider him good to go. He's also had to get an IV so he can get fluids and antibiotics - and that has been hell for him! The first night they stuck him 14 times trying to get a vein, and finally called the anaesthesiologist (sp) back in to find one and even he had a difficult time. Only to have the IV come out the next day and he was stuck another 10 times before they gave up and asked the Pediatrician if they could leave it out and just try bottle feedings (I have been pumping) and administering antibiotics through shots. Of course, he'd have to be able tolerate his feedings outside of the hood though. So - we tried a feeding last night at 9pm, and he didn't do so well:( So - once again, he had to get another IV. This time they did get one in his arm - but now that means we can't hold him anymore because we can't take chances of losing that IV again. Kevin did finally get to hold him yesterday though a few times, which I am so glad!

Big brothers Ethan and Caden have been up for visits a few times and so far little Caden is showing that he can't control his love for him. They both were dying to see him - so yesterday the Nursery Nurse unhooked him and brought him to the door and let Daddy hold him and show him off to Grandpa/Grandma and the boys. Caden could hardly contain himself, he just wanted to touch that little baby of his and so we broke the rules and let him take one step inside the nursery. Caden's little hands immediately went to Quinn's little face and just began touching and loving on him. Ethan thought he was pretty cool too - but was much more reserved and just stood back and observed.

So far, medically Quinten has received a chest xray to figure out why he isn't sustaining his oxygen levels. That ruled out any holes in his lungs, and luckily just showed a small amount of fluid which is typical of transition from womb to real world and we hope will go away soon! He's had a full Echo cardiogram done on his heart by a Pediatric Cardiologist, and that showed no signs of major defects - the only thing is said was that they couldn't "rule out PDA" at this point, because it did show that the left side hasn't closed on its own completely yet. Again, we're told not to worry about this and we'll followup on that after we get him released. He also had a foot x-ray done today because he's had some swelling since birth in his right foot. That came back normal as well.

Overall, we are very pleased with Quinten's health - lots of my worries have subsided. We are just disappointed that he's had to remain in the nursery all this time and that no one has been able to see him or hold him yet. He is so loved already, and everyone just wants to love on him. He's going to be overwhelmed with love once people can get a hold of him.

I am being officially released tonight as a patient, but our hospital does allow me to be a boarder and stay here as long as Quinten is here. I basically remain in the same room for as long as I can, and I can come and go as I please, still get my meals if I want (although the food is starting to taste worse and worse)! And that way I get to be with Quinten for as long as I can. We are hoping that he'll start tolerating trials outside of the hood for longer than 3 hours, and start doing his bottle feedings better too! And then he can come home with us.

We'll keep you posted - now that I've gotten all of this out in one HUGE blog!! I am having trouble getting photos uploaded on this site, because they exceed the size allowed. I will be uploading them to my Facebook page, so go there to see them or email me if you want me to send them directly to your email address!!

XOXOXO,

Mandy

Continue prayers for us that Quinten makes a quick recovery and can get to come home this weekend!!








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Boys Having Fun in Green Bay, WI

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Perinatologist Update Today

Thursday, August 25, 2011 4:25 PM, CDT
Perinatologist Appointment Update
We are delighted to share in some good news today with all of you, after our Specialist appointment this morning. I am about 24 1/2 weeks along now, and we have continued to receive positive news at our appointments and we attribute that to all of you, God, and the answered prayers that everyone is saying for us on a daily basis. I continue to remind myself that our little "Miracle with Designer Genes" is NOT supposed to be here! Just 3 months ago, he was given less than a 5% chance of even surviving and now we can see the light at the end of this rollercoaster!

Today, we had our Perinatologist appointment with Dr. Egly in Peoria. It was the day that he was going to do a detailed ultrasound of his heart and determine if we need to see a Pediatric Cardiologist for a complete echocardiogram. Remember, over 50% of babies with DS have heart deffects so this is very common. The news we received today was better than we could have hoped for:
1.Dr. Egly couldn't find ANYTHING wrong with his heart - and he looked, and looked for a long time. Blowing it up, putting color to it watching the flow of the oxygenated and non-oxygenated blood, septums clearly defined...he even mentioned, he didn't even see any "leaks" across the membranes. "This baby's heart looks good - of course, I can't tell you its normal, but its exactly what we want to see."
2.He said he's growing right on track and weighs about 1.9# (a little larger than average even) - guess its all of the good eatin' I've been doing...I'll just attribute that to nervousness
3.The HYGROMA is 100% resolved now:) No evidence except for a little extra skin on the back of his neck - probably will look like a fat roll when he's born. Yippeee!! God is good:)
4.Best part - he released me from his care today (not that we don't love him)...but said I don't have to deliver over at OSF in Peoria, and that I can deliver in my own hospital in Bloomington because he sees no reason not to.
Only one bit of bad news was actually on my part. I've been having more Braxton Hicks than normal, and I'm approaching the 26 week mark, which has been the time when I've been put on bedrest in my two previous pregnancies. So, today I asked him to check out my cervix to see if its started to change - and it has:( It's beginning to shorten (should be 4cm long, its already 2.7cm). He's putting me on progesterone pills for the remainder of the pregnancy and it certainly looks like bedrest is in my very near future. I was hoping to avoid going that route again - but doesn't look like it.

Maybe all of your wonderful prayers out there can start saying prayers for me now - to keep me off bedrest, and from going into pre-term labor. I know that's a tall order - but you've all shown your power up until this point, so let's give it a shot!

Please continue praying for health for our baby boy. We know we are not out of the woods yet. There are many things that can still go wrong and undetected, that won't show up until he is born...so we have to keep that in perspective. He's a fighter though and we can't wait to bring him into this world. We may just luck out that he'll be one of the healthier babies with Down Syndrome and won't have to endure countless surgeries.

Love to you all! XOXOXO - keep us in your thoughts and prayers.






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3D Ultrasound Photos

Here are the 3D images of our little boy.....

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Tomorrow's the Big Day With the Specialist

Tomorrow we go to see Dr. Eggly for our 24 week appointment, and to have a 2nd ultrasound of the baby's heart.  If all goes well tomorrow, then we won't have an echocardiogram appointment with the pediatric cardiologist.  If Dr. Eggly sees something suspicious though, we will have the Echo done.

We'll update you after the appointment.

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