The New Piece of Brennan's Sight Journey

Brennan's vision has been a challenge since he was born; his prematurity and underdeveloped eyes, then compounded by needing so much oxygen for so long did quite a bit of damage.  It's been quite a journey trying to understand what he sees and what he needs to see best.  Each stage brought different pieces of information, levels of understanding and ways of trying...
  

When he was a baby, we relied on the doctors and tests to tell us what he could see and when he needed more surgery to help reconstruct his eyes from his retina detachment and strabisimus but we kinda needed to wait til he grew up more and his eyes developed more to learn more.

When he was a toddler, a lot of other issues came into play that clouded the picture - as he started walking, we learned he had a balance disorder, but that also looked like it was because of his trouble seeing.  He loved to bounce and we learned he had sensory processing disorder and needs high input, but it sure looked like he was trying to move his head & body to keep up with his racing eyes.  We also started noticing that there might be problem with his vision field (not just the strength of his glasses prescription).  He started talking (a bit delayed) then we could FINALLY ask him what he sees!  He had some cognitive delays that impacted his comprehension of our questions & his answers, speech delays and mumbling that made it hard for us and frustrating for him.  We did learn that he could make out some images from a distance, but to focus, he needed to see the object from the bottom left part of his left eye.
 

When he was a preschooler, the schools and therapists got involved, along with daily learning at home.  There was a lot of focus on new learning that challenged him which (good & bad) really brought out the deficits and the need to figure out how to help him communicate.  He worked on learning academically and relaying what he was learning.  We kept trying to sort out sensory, balance, vision, possible cognitive delay, emotions and behaviors as he faced new experiences, expectations and challenges.  Some things are easy to sort out, some crossed issues and others we're still not sure...  School introduced several new techniques, large print and even a large touch screen computer!  He was so eager to learn, willing to try new things, excited, but also got frustrated and wanted to do more at times.  He mastered recognizing his letters, numbers and colors!  His brain grew so much but couldn't get it out fast enough!  He really made so much progress during preschool!

Now, he's a Kindergartner!  We're continuing to sort things out, determine the best strategies to help him learn, navigate the world - and he really is doing great!  He can walk down steps, put on shoes, find things he's looking for by himself.  This year in school he's focusing on reading print and writing which are really hard for him.  He can use the computer well, but we tried large print, writing with dark markers and haven't been successful to his standards yet.  He can't read what he's written, or tell what he's drawn afterward and gets disappointed.  The books are blown up so large, the papers are clumsy to use for him and he's gotten frustrated.  Don't get me wrong, he's such a happy kid still and it's hard to see him get frustrated!  The newest thing this year we've tried...Braille!  He was getting pretty frustrated and he is so smart, we needed to try something else.  We talked with the National Federation of the Blind representative and the school vision specialist introduced it this week and he embraced it!

I'm not going to lie, I was excited about him trying Braille when we were first talking about it, but now that it's a reality, it took a bit of acceptance.  I'm so thrilled for him to have a great method to read and write!  I'm also a bit overwhelmed at needing to learn another language and the thought of another adjustment for our family.  The day he learned about Braille, we talked about it at dinner and Hailey was so excited.  She had just learned about Helen Keller and how important Braille is for people to communicate!  She asked Brennan what class he learned it in so she could join him one day to learn too...precious girl!  I've said it before, but she is the perfect sister for these kids. :)  After he get's a good handle on it (or probably while he's learning too!) we're going to all learn together so he can read to us!  Of course, he'll continuing using his vision too, but knowing Braille will make communicating less frustrating for him - he'll have another tool and not have to work so hard at it.  It's another adjustment, but we've been through quite a bit of adjustments already and are starting to know the drill.  Don't get too comfortable with status quo - there's always something else in store!  

Hip Reconstruction Pre-Op

About 6 weeks ago we learned Landon needs a bilateral hip reconstruction surgery.  At that point, his right hip was only 20% in socket and the structure of the socket is not fully developed to hold the femur.  The tendons in his hip and groin area are really tight, so they'll cut and loosen them to add more flexibility.  It'll be about a 4 hour surgery, in the hospital for a few days and then recovery in a 6 week spica body cast.  I know recovery will be difficult, painful and long but we hope it'll be so helpful long term!

I've had time now to digest the shock and come up with a ton of questions!  At our orthopedic consult I had no idea his hips were so bad and that surgery was our only option.  Brooke came along for the consult and Landon was in pain from the assessment, there was too much on my mind to really comprehend what the surgeon was saying at the time.  It was probably a good thing - she helped ease hearing the news until I could understand more. :)

Today was his pre-op appointment - new x-rays, blood work in case he needs a transfusion, anesthesia consult...and answers to my questions!  I talked to another mom who's son had a spica cast and learned great tips for positioning and diapering and found tips online too!  The kids understand what recovery will be like, as much as any of us can prepare.  We're going to do our best to have Landon be part of as much as possible.  Recovering is 6 weeks in a body cast, roughly 6 months to get back to baseline (for typical development, we'll see!), 12 months to begin making progress again.  It was really discouraging, especially since he's been about his progress this season but we know this is the best thing for Landon to be in less pain and more mobility, and need to have the end in sight!      

Surgery Day in 2 weeks!  Keep him in your prayers!

Landon's big belly

Landon is really sick right now.  Over the past couple days he has had difficulty breathing and his stomach has been extremely bloated, but the docs haven't found the reason.  Beginning Sunday night all of a sudden his belly was really swollen, but didn't know why.  He had eaten well on Saturday and was on low cannula settings.  Sunday night we got a call from the docs saying he wasn't doing well - there was a lot of free air in his belly putting pressure on his diaphragm making it hard to breathe.  He was going to be put on CPAP.  Monday when I saw him he didn't look good and wasn't his cute ornery self.  He was on more pressure support from his CPAP.  This morning he was even more support when I checked in at 7am.  At 8am I got a call from the docs saying they needed to intubate him (breathing tube for ventilator).  He had a Lower GI test test done today at 9am and he needed to behave for it so they intubated him.  The films showed what they thought was free air, but they weren't going to do surgery at that point.  His umbilical hernia is really large and they reduced it, thinking that may have been the problem.  At noon he was doing better, but then I got a call at 2:30 saying he was really bad and they needed to take him down for emergency surgery.  Needless to say, I flew out of my office and down to U of M.  When I got to the parking lot, they called saying after several consults with radiologists they don't believe it's that immediate and they'd schedule an Upper GI test tomorrow (Wednesday).  They believe that he might have NEC again but are not sure the extent of it.  They also think that his hernia could be putting pressure on his bowels which may cause them to have a hard time restricting and relaxing (allowing bowel to pass).  He's really lethargic, on high ventilator settings and his oxygenation had been poor.  It's hard to see him like this.  Saturday he was doing great!  It's really unbelievable how quickly things can change. At any point over the next couple of days he could have surgery.  Please pray for strength and comfort for Landon, wisdom for the doctors and surgeons and peace and strength for Nich & I.  We'll keep everyone posted! 
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Weekly update coming soon...the internet at RMH hasn't been so great.  (I've reconnected 5 times just in writing this!)

Getting Shunted...update

Another update - Landon did really well!  He is extubated (took an extra 1.5 hours) but he's only on nasal cannula and on 35% oxygen.  We're so proud of him!  They removed his resevoir and placed his shunt on the other side.  The Dr said he has a lot of tubing coiled in his belly so hopefully will not need many shunt revisions as he grows.  Praise God for a successful surgery!  His head already looks smaller and he looks great!  :)
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Update - Landon's surgery is rescheduled for 11am Thursday morning as the first case ended up being over 10 hours!  They gave him Tylenol tonight to help with his pain and it seemed to at least take the edge off.  I'll update tomorrow - it should take about 2 hours.  Thank you so much for your prayers and encouragement!
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Landon's Hydrocephalus has been getting worse the last couple weeks, especially the last 3 days or so.  He has not been tapped (drawing 5cc of cerebral spinal fluid off his head through the resevoir) for about 3 weeks and his head circumfrance has been growing.  He was doing ok, draining the fluid correctly, then the fluid started building up and his ventricles were enlarging, causing his head to enlarge.  Thankfully this is happening while his skull is still forming and he has room to grow and not have as much pressure.  The last couple days he has been really irritable, unable to be easily calmed and arching his back a lot more.  He just looks plain uncomfortable, and I feel so bad for him!  When he sneezes, he cries right after, like he's got a pressure headache.  He probably does!  Well, he had a cranial ultrasound Monday (as usual, every Monday) and it showed, yet again his ventricles had enlarged and Neurosurgery saw how he was acting and decided this was the right time for the Ventriculoperitoneal shunt.  We waited until around 11pm to sign consent for the surgery and find out what time he actualy will go back.  He was supposed to be first case (around 7:30am), but an emergency case bumped his.  That's ok with me!  If  I was in that situation, I'd want someone more critical to be in line first.  It's good news that Landon wasn't critical.  His surgery will be at 3:30pm now.  So, I'll update after surgery!  Thanks for all your continued prayers!

Prayers for Landon - UPDATE

With preemies things change on a dime...

We knew Landon didn't feel good for the last couple days, but the doc's just couldn't put their finger on it. Last night (Friday) we stayed at the hospital until 12:30am because something new kept happening. He has one of his favorite nurses taking care of him, she loves him like he's her own and we know he's in great hands. Even though he was maxed on his Dopamine (bp med) his blood pressure was fluctuating quite a bit. It'd go from a MAP number of 35 (ideal pressure) to 19 to 46 - really bouncing all around. He'd desat (his oxygen saturation percentage would lessen) and his heart rate was also high. This isn't a good combo. He already has Pulmonary Interstitial Emphysema (PIE for short) (along with Brooklyn), which adds stress on the heart and lungs. (you can click on the link for more info on PIE). Our Rocky fighter has been trying to breathe over the ventilator which makes him not receive all the benefits from the vent and tires his body out so while we were there they gave him a respiratory paralyzer so he would relax and use the support of the vent. His lungs aren't ready to function on their own without the vent, but some kids try to breathe on their own anyway. This worked for awhile and his oxygen saturation improved, however his bp got really high (50's). Unsure why, they ordered a chest x-ray. This showed worse PIE in the other lung so they rotated his body. We decided he was stable enough and went home for much needed rest. At 1:30am the doc's called letting us know he has pneumothorax, or collapsed lung, (again click on the link!) and they were going to remove some of the air under his lungs with a needle. They didn't think we needed to come up and promised to call if he got sicker. We got back to sleep. Called at 6am saying there was still air, and more of it, so they are going to insert a chest tube drain to try to get rid of the air, (same drain they used after their PDA heart surgery). He is doing well, they just need to get this air out. Again, they have promised to call if conditions change and didn't feel we needed to come to the hospital. We are confident in the doc's and know God is watching over him and guiding their hands. Please pray for Landon's recovery from this and that he gets much needed rest. Will update you if anything changes. I just wanted to get this info out for all you early morning prayer warriors!

----- UPDATE -----

Landon is doing ok. He's stable and his blood gases (measures oxygen levels, acidity and carbon dioxide levels) look surprisingly good! When they laid him on his side yesterday for the PIE, the lung hyper extended and allowed the PIE air pockets to burst, causing the pneumothorax (leaks in his lungs). During his last chest x-ray, it looked better, but his lung seemed overinflated. They lowered his ventilator settings which helped improve his blood pressure and heart rate. It's kind of a wait and see situation. It may take a couple weeks for his lungs to fully heal, but in the meantime they are monitoring his blood gases to make sure the rest of his body is receiving the right amount of oxygen and his organs are oxygenating well. Keep him in your prayers, we don't want him to get too worn out!

Happy 3 Weeks!

Happy 3 weeks Brennan, Landon & Brooklyn! This is such a big day for them! They are now at 26 weeks gestation and 3 weeks old. When they were born they had a 25% chance of survival, now they have an 80% chance. We're still not out of the woods, but they're so much stronger. These babies are so resilient! Today was photo day in NICU Room 1 - here's our superstars!



Brennan Nicholas 1lb 10oz (birth weight 1lb 4oz)

Brennan has had a really rough week. I posted about his scare on Saturday, and he is doing 110% better! His blood pressure is up, only on 1 medicine (out of 3) and only on a very small amount. When their blood pressure is up and stable they pee better. When we came up today, he had just peed his entire bed again. You'd never think someone that little could pee that much! It was all the way up to his shoulders! That's good, but wow! He is getting so much more personality - he's our calm, quiet one. We are so thankful! As far as medical updates go...he had his PDA ligation on Wednesday (had to match everyone else!). He's recovering really well, especially given how sick he was over the weekend. We just keep praising God for His healing hands on our babies! He had a cranial ultrasound, which came back with good news! The brain bleeds are slightly decreased - not a huge change, but at least a change in the right direction. Only time will tell how this will affect the boys. He is still on the conventional ventilator and doing quite well on it. He's hanging in there!



Landon James 1lb 14oz (birth weight 1lb 7oz)

Landon is still pretty feisty, but calming down a bit. As you can see, he's not restrained (at the moment!). Probably sedated! We joked with the nurses that we'll have to get prescriptions for Morphine and Ativan when we bring them home because they've been on it so much here! Tonight, Landon's nurse peeked in at him because he was making his monitor go off and he had both hands on his ET tube, most likely with a crazy look in his eyes! That's our boy! Always keeping people on their toes! It's so neat to see they each have such distinct personalities! Medically, Landon has had a great week. He did get the intestinal drain like Brennan (they both match now - PDA & drains) and that is slowly inching out. He did have a perforation of his bowel, and I believe he did have Necrotizing Enterocolitis (NEC) or their just watching him for it (can't remember and I didn't write it in my notebook!). He did have the bile vomit and has been more lethargic this week. Also, a couple cranial ultrasounds ago, the ventricles in his brain appeared larger, but was not big enough to worry about. Yesterday they came back smaller and his bleeds slightly decreased as well. Way to go boys! He & Brooklyn will be given a diuretic to help them get rid of some of the fluid (he hasn't really gained 7oz of regular growth!). Hopefully it'll get them back down to size. All in all, a pretty stable week from Rocky! :)



Brooklyn Danielle 2lbs (birth weight 1lb 3.5oz)

Our sweet, plump Brooklyn...I tried to get a flattering picture, but just wasn't happening today! She had the PDA surgery on Friday and really swelled up after. It's been really hard for her to lose the fluid. Hopefully the diuretic will help get her back to size. There isn't any definition between her belly and her waist! She's had a slow recovery from the PDA ligation - she's been really limp and needed to go to the JET ventilator. (Landon was on it for a couple days) She seems to be responding well! Brooke's the closest to eating breast milk! On Monday, if she continues doing well, they'll assess her by following dye through her digestive track to make sure everything is in tact and flowing appropriately. Occasionally in babies that haven't had food in a long time, tissue forms near the stomach which would cause a back up. I know how good that is for them and can't wait until they're ready!!



I made this collage of their pictures at 1 week old and 3 weeks old. Their skin looks better and they're filling out. Looking more like babies every day! Our amazement continues as we watch them grow and mature. Never in a million years would we have expected to be in this situation, but we have been encouraged by all of you. God doesn't give us more than we can handle, and when it seems like it is, we need to remember to lean on His strength. We can't do this alone, but with His peace, calmness and strength. There's a song with the lyrics, "He gives us strength for today" that continuously plays in my head. (preggo brain still can't remember the rest of the song!) Reassuring me that we can get out of bed each day, go to the hospital and just love those babies. He gives us physical, emotional and mental strength to endure all of their ups and downs, taking one day at a time.

If it's not one, it's the other...

The babies change everyday, if not every hour! Here's an overall update. All babies have their PICC line which can be used longer than the lines through their umbilical cords for medication, manage blood pressure and other goodies. This is a huge accomplishment! It goes in a vein from either their leg or their arm to their heart. Brooklyn and Brennan are through their leg and Landon is through his arm (pretty sure! I might have to go down and look at them to make sure!) Each of the babies have also opened their eyes! Brooklyn was first (10/7), Brennan second (10/8) and Landon last (10/9). We took pics last night of everyone, but haven't got them uploaded to the blog. Check back! :)

Landon is now our superstar! He's hanging in, really steady. He's keeping us sane right now! :) He's so fiesty he had to be in a 5-point harness! His arms and legs are always flailing and touching tubes and leads that he shouldn't be. Today I got to change his diaper! His nurse let me do it all by myself! When I first opened it up he was still peeing...I'll definitely have to get used to having boys! :) Another bonus - I got to hold his hand (well he held my finger) to calm him down and just show him some love. He had a white-knuckled grip on my finger!! Not sure if it's his because he didn't want me to go or because I bothered him! :)

Brennan is now the one they're most worried about. The last 2 days he has gotten progressively sicker. Yesterday his blood pressure was so low. He was maxed on his Dopamine and Dubutamine (blood pressure meds) then they added Epineferin to try to get it up. It was still hanging low and the docs weren't sure what was causing it. He hasn't had any new infections and his PDA is moderately open (rather than really open like his siblings). We woke up this morning to a message from the doctor saying he was critical and we needed to come as soon as possible. They thought he was in renal faliure because he hadn't peed much at all. They thought he wouldn't make it and we were trying to prepare ourselves for losing him. We called our church and family to start the prayer warriors early - God is in control. The docs said they were reaching the maximum medically that they could do, but we have God in our pocket! :) He had the best nurse, we were worried when we got to the hospital, but after seeing who was taking care of him, we were so at ease! We all were praying and watched another miracle take place! God is sooooo good! His blood pressure started rising and he started peeing! Never been so excited for pee and higher blood pressure!! The heart surgeons and gut surgeons are following him and said they probably need to act this weekend. They're just not sure what is wrong. He had an abdomenal ultrasound to see if he had dead bowel that needed to be removed or fluid build up, but that's not the case. This morning the heart surgeon said he wanted to make sure all other reasons were explored before jumping to the PDA surgery because he was so sick. He has taken a major turn for the better! He still may need some type of medical intervention, but the nurses are able to wean him off some of the blood pressure medicine and he has been peeing consistently. Horray!!

Brooklyn is such a trooper! She had her PDA surgery yesterday and pulled through great. She is pretty swollen from the surgery and they are really wanting her to pee to get rid of some of the fluid. In the last 24 hours she had a larger breathing tube put in (with the smaller breathing tube, there was extra oxygen just coming right back out her mouth), PDA surgery and a PICC line inserted. She has had major surgery and is in recovery. They said she'd perk up in a couple days. She's hanging in there!

We are so thankful for all of your encouragement and prayers! God is our strength - there's no way we could handle this on our own! Each day with these little guys is such a blessing and we have witnessed so many miracles. Our faith is so strong! Our babies have such great care, but medicine only goes so far, as Brennan showed us today. God is in control and steady. Our babies are weak, but God is their strength. We hold on to this. Thank you all for EVERYTHING you have done and all the support you have given, from the bottom of our hearts. We are so grateful!

6 days old

Where do we start?! The babies change so much each day, let alone 6 of them! I'll try to get most of this straight - we didn't bring our notebook today. :) I'll try to make this brief and avoid the medical lingo as much as possible. It's amazing how much Nich and I know! Also, we did get their official weights and measurements back (they were too fragile when they were first born):

Brennan (Baby A) 1 lb 4oz and 11 inches long
Landon (Baby B) 1 lb 7oz and 12 3/4 inches long.
Katelyn (Baby C) 1 lb 5oz and 11 3/4 inches long
Brooklyn (Baby D) 1 lb 3.5oz and 11 3/4 inches long

These were really big babies! The NICU staff was really excited when they found out their sizes! The average size of a 23 week baby is 1 lb 1oz and 11 1/3 inches long.

Each baby has had a kidney, heart and brain ultrasound in the last few days. Kidney's of all look good and are filtering out what needs to be filtered. Other great news, they should be eating in about 10 days! I've got plenty of milk stored up already for them! In each of their hearts, they found a blood vessel (ductus arteriosus) that has not closed properly. When I was pregnant and receiving Indmethocin, they found from an ultrasound, signs that this vessel was closing early in 2 babies so had to stop my dosage of the med. Turns out, it didn't close completely from the medicine or naturally. The cardiologists have seen their screens and didn't feel the problem was serious enough to warrant surgery now. Everything else in their hearts look great (a victory!!). Their brain scans came out a little different so I'll describe them below, along with baby specific updates.

Brennan - Steady rider with the hiccups! He has pretty much stayed in the middle of the pack. He's been doing really well and winning the hearts of the nurses. Many have signed up to care for him. This has helped us in building a relationship with the nurses and they're more comfortable with him. Win, win situation! :) As far as his brain scan, the preliminary results show he has a brain hemorrhage in both sides. It's called Intraventricular Hemorrhage (or IVH). There are different grades, but they believe Landon has a grade 3 in both hemispheres. Tomorrow we should learn the results of a repeat scan. He is on a conventional ventilator and slowly being weaned off that.

Landon - He is our big stinker! I believe he's up to his birth weight now. He has been the slowest to tolerate change. From the beginning, we've been concerned about him. He is on a High Frequency Oscillator, which is a different kind of ventiliator (Katelyn was on it too). This bounces his chest and gives him oxygen differently. They are weaning him slowly off this and hope to switch to a conventional ventilator like Brennan and Brooklyn. He has been able to come off much of his Dopamine (blood pressure med) as it is starting to stabilize. :) As far as his brain scan, the preliminary results show he has a brain hemmorage in both sides. It's called Intraventricular Hemmorage (or IVH). There are different grades, but they believe Landon has a grade 3 in one hemisphere and grade 4 in the other. Tomorrow we should learn the results of a repeat scan. We will deal with these challenges as they come, for now we are so thankful we have him!

Brooklyn - She has been our trooper! She has tolerated the most change and is weaning off most medications and taking less of her ventilator. They were concerned about a small air bubble they found in an artery near her live/stomach area, but have since rechecked her and everything looks good. Brooklyn does not seem to have a hemmorage. Initially they saw a grage 2, but the second scan showed it had disappeared. She moved in with the boys today!! Now when we visit we only have to check in with 1 room and hear reports from 1 team! This will be so much easier for us to stay on top of all the babies health. I'm not sure if she gets a different team of nurses, but we really want to thank her nurses for the amazing care they've given her!

I'll try to label the posts medical update, so those of you interested can search for these, others can just take joy in the victories and pray for the weaknesses! This is a totally different world for us, and we feel as though we've been thrown in but between the doctors and nurses are keeping our heads above water. We've been to see them most of the day everyday. Every part of the hospital seems to know us (doesn't help we have a million wrist bands!)

I could just sit and watch them breathe and move every once in awhile. I'm in awe of how perfectly formed they are. God knows what he's doing - he knit each of them together in my womb and they are fearfully and wonderfully made. Psalm 139:13.