We are super tired but just wanted to update. Mason's stitches in the top part of his head held up today. The stitches behind his ear, however did not and when we just were headed out the door at 12 pm they started leaking. So we called them and they came back up, pulled 30 cc off his head and put more glue in those. So we are hoping and praying all of this works. We are home and hoping to stay home!
So we had to take another trip to the ER today because Mason's shunt started leaking again. Yesterday we had an appointment with neurosurgery which I canceled because it wasn't leaking (plus they told us we didn't need to go if everything was ok). So of course it started leaking today at the top part of his head. I guess Mason is making sure my mom and I are old pro's at going to the dr. (don't know what I would do without her help)! Today's plan of action was to re-program the shunt so that it would drain some more and hopefully relieve some of that extra pressure so that the incision site can heal. They also took dermabond (basically super glue) and put it at the incision site in hopes that it will heal completely. We are hoping and praying that this works. Phew, what a day or past couple of weeks. I am ready for some boring days! I think Mason just wanted to go visit his neurosurgery buddy "Uncle Phil" again.
Waiting before surgery...he was breathing really well without his oxygen. Silly boy pulled it off his face.
So Mason got discharged from the hospital today and on our way home we noticed that the top of his shunt was leaking again (where the new incision is). So we pulled over to make a detour and called the hospital back. Neurosurgery said to watch it and keep him upright for 48 hours and put antibiotic ointment on it and hopefully by Monday it will be better. If not then another trip back. Please pray that his new incision and that this shunt will work. We are pretty discouraged right now. I hope and pray that he won't need another surgery so quickly after this one was done. Thank you for your prayers.
Mason made it through surgery. Good news is his belly part if shunt was working so he didn't have to put it in his heart. The shunt was clogged at a point and it wasn't in enough of the ventricles so he fixed that. He took a peak at his brain and said overall it looked pretty good. They are keeping Mason overnight to watch him. Josh stayed with him and said he has been in a lot of pain but they have it under control now. Poor baby! Please pray for him to heal quickly. We are thankful for good news.
Today we are very thankful. Thankful for our family. Thankful for the hard times we've gone through this year. Thankful for the big and small victories. Thankful for our family and friends and all the prayers that have gotten us through. Thankful for Gods provision in our lives. Each and everyday has not been easy but God has gotten us through and carried us every step of the way. And He will continue to as long as we look towards Him. May you and your family always look towards Him in every circumstance and every situation you may encounter so that you may receive peace and thankfulness. Happy thanksgiving! From our family to yours!
We are back home. They re stitched the incision behind his ear, did x rays, ct scans, tapped his head to check for an infection. Everything looked good so no surgery. Thank The Lord. Mason is very upset and agitated so we are praying he settles down. Think the last few days have been enough for him. Plus he didn't eat all day in preparation for a possible surgery. Please pray for a restful night! Thank you!
Three appointments. One day. Ready, set, go! We survived and are all in one piece. Mason didn't really stay on any feeding schedule today but that is ok because he measured in as obese on the growth chart. Yes, that is right OBESE (12 lbs)! Guess who is going on a diet for the holidays? So they decreased his feedings down to 70 cc which is what he was on when he was discharged from the hospital. He has grown in length some but these 2 measurements do not coincide well and he needs to grow longer and not gain so much weight so quick. They were impressed overall with his skills and she said he was very smart with his bottle intake and careful with himself, judging when he was not able to safely intake. She did put him on reflux medicine (thank the LORD-last night was rough and he was in so much pain) so we are hoping that that will help.
On to the audiologist where she was hoping Mason would be asleep. Not so much and he wasn't really feeling having his hearing checked. She did work with him and we are going to have to have a complete diagnostic. Initially he had passed the right ear and not passed the left ear (which is where his shunt is) but today he didn't pass in both ears. She said typically with the shunt there will be high frequency loss which is what she is suspecting in the left from her test today. The right side could possibly show some loss but since he wasn't cooperating she can't really rely on that. So we are returning in a couple of weeks and praying he will stay asleep for an hour and a half (which is how long the test will take).
Then onto the NICU follow up where not much really happened. We were able to see our old neonatologist there that had taken care of Mason for his first 2 weeks of life. No changes on anything right now but they did do labs to check his sodium and potassium since he is getting supplemented every feeding. Heres to hoping the next few days are a little less hectic and with more relaxation and more sleep (thanks to reflux medicine)!
This little boy is REALLY strong! He wasn't sure how he felt about sitting up like this but did enjoy looking around. We had a good weekend and got out Christmas decorations put up! I LOVE Christmas and was ready to decorate. Corbin was so excited to participate this year and when I started getting them out on Friday he just shook with excitement. He was a big "helper" this year and even got to put the star on top of the tree.
Mason helped out by sleeping and eating...what babies do best right? Passed out while we were hard at work...
These boys got to spend some quality time together and we let Corbin hold Mason for a second. He told us that Mason was hurting him. The only thing I can think of is maybe his oxygen cannula was rubbing up against him. It was a sweet moment though...
Here is the finished product of our decorations in our living room (we are still waiting on Mason's stocking to come in the mail). Hope you all had a good weekend!
Ok, just to start out and say I am not ignoring the blog. I think about updating all the time but most of the time I chose sleep over updating. Because I need it. Very much. Everything continues to be a BIG adjustment. Corbin is finally feeling it and is testing my patience. I am still trying to figure out things with Mason and get into a routine. We have changed around his feeding schedule (per nurses, pediatrician) and he is enjoying his extra milk and sleeping more...most of the time. He will be fussy during the day at times and needs attention...always while I am pumping. He must have a sixth sense about him. He would be content if I held him ALL DAY LONG. This morning after I had had no sleep because he was fussy last night his g tube came out. Luckily, the kids path nurse had brought in a folly catheter and talked to me about it on Monday so I was somewhat prepared. I just remember her telling me not to panic. So as I am running around the house, trying to find everything I just kept saying to myself don't panic don't panic. Phew. I ended up getting everything together and putting in the catheter as Mason ripped the oxygen off his face. Stomach stuff flying everywhere. Him crying. Good times. Don't panic. These are the days I will remember down the road but man I am ready for it to be a little easier. Goodness gracious! But thank the Lord through all things and all circumstances. Atleast I get to have days like this with Mason. So after I got in the catheter, re-tapped his nasal canula, and put some clothes back on to keep him from pulling out the catheter, I picked Mason up to comfort him and he looked at me and grinned. Silly boy.
This little by has been keeping me busy.
Mason is doing good overall. He has definitely started spitting up A LOT more than he was, usually after he takes a bottle. I try my best to burp him well but still we have spit up. We go to Kids eat on Tues. so I am sure they will assess that. He continues to roll over from from to back anytime I put him on his belly and has almost rolled over from back to front. He is SO strong and will grab at you, push the bottle away when he needs a break. I really can hardly believe and am amazed at his skills. Totally a miracle from God. He has great neck and head control and loves to sit up on my knee with just a little support. He loves to sit on his play mat and has fairly fluid movement while he is playing. He makes little baby squeaky noises and can put some weight on his legs. All of this is unbelievable considering he is really only 2 months old adjusted today. He takes some feeding by mouth once he gets settled. he continues to have a large degree of oral aversion and takes a bit to figure out if it is a bottle or some type of negative thing. I pray he will settle in and learn positive experiences. His sleep patterns are ok. He pitches a fit if you try to lay him flat on his back at night in a bassinet. I have got to figure out a solution to that. But overall we are doing ok. Just adjusting. They told me the first month was the hardest and I am praying that it only last a month! But God is good and we are blessed. Next week we have 3 appointments on Tues. Kids eat, audiological follow up (he didn't pass his left ear hearing screening; where his shunt is so expected), and follow up at neonatologist in Greensboro. Please pray for good news from dr.s and helpful suggestions and hints. We continue to ask for prayers for complete healing of our little boy (neurologically especially) and that he would begin to trust us and settle in to everything. Also prayers during this adjustment period and that I will keep my sanity and that Corbin will adjust. Sorry if this is scattered but remember I am sleep deprived! I am now Mason's 24 hour nurse among other things!
Today marks 1 week since Mason's homecoming and boy have we been busy. This past weekend, Josh's brother Nick got married and we were in the wedding. It was a beautiful day and we had lots of fun participating in the festivities. Corbin walked down the aisle and was a trooper through the whole event. Mason did great at home with Gigi. We did have a couple of sleepless nights snuck in there just to make things a little interesting but we survived.
Willow Oaks Plantation was right up Corbin's ally. Tractors, golf carts, dump trucks galore!
Taking a nap on the pillow once he got up the aisle. He actually went and sat down on the second aisle and sat quietly (kind of singing) through the whole ceremony until it was time to walk back down.
Mason even sent his congrats!
In other news, we have been trying to balance meds, feedings, equipment, cords EVERYWHERE, crazy monitor that goes off frequently because the leads come off, it needs charging, etc. It has been a little hectic but I am praying it will get easier. Mason was weighed yesterday by Kidspath nurse and he is almost 11 lbs! He is doing well taking the bottle if we get it the right temperature and give it to him before he gets so hungry he is irate (has taken complete feeds numerous times and is doing well). Learning all of these little quirks are definitely helpful but it has been a learning curve. He also has been waking up about 30 minutes or a little bit later after each feeding acting like he is starving so I spoke with the nurse about adding more and that has made him happier. They are reworking everything to try to get him moving towards a 3 1/2 to 4 hour schedule. He will get fussy if he needs to be burped, has a dirty diaper, you know normal baby stuff. Of course, at first, I was freaking out thinking it was something worse but I had to remind myself that he is a BABY. Everything else is going well, Corbin seems to be adjusting fairly well. I have not yet ventured to keep both children at the same time yet but hopefully I will try later on this week. We are so thankful to be together but not saying it isn't a little crazy! Take a look:
Mason LOVES this rainforest play mat and will look around.
Lifting up this head is hard work!
This boy is enjoying being a helper and is trying his best. He cracks me up! I sure love both our boys!
We have had a busy couple of days. We are excited that Uncle Nick is getting married tomorrow! We also went to the pediatricians office for a well child appointment and he was pleased with everything. He said his lungs sounded clear and a lot better than he expected. Mason weighed in at 10 lbs 3 oz! We met with an agency called Kids path that is going to have a nurse come out and a social worker the will coordinate any special needs we might have. What a blessing!
Mason also decided to stay up a bunch last night fussing and demanding our attention. He wanted us to hold him. He isn't spoiled. So all is well, we are just tired. Corbin is doing pretty good but also had a restless night as well. We are praying for a better night overall considering our big day tomorrow. Thank you for your continued prayers of healing and adjustment for our boys. We are praying for an eventful free winter!
We are doing well and trying to get in a routine and figure out all of Mason's equipment. Mason came home on oxygen, a monitor, and with a feeding pump. I feel like we have cords coming out of everywhere! And the monitor is very loud and will go off for crazy reasons and then you have to frantically figure out what to do to make it be quiet! If Mason wasn't breathing or was dropping his heart rate, I am sure the loud noise would scare him into fixing his problem!
Corbin is enjoying his baby brother being at home. Mason got him a play John Deere gator and tractor as a gift. He was very excited. We are working on gentle touch and clean hands all the time. Oh, and please don't mess with Mason's equipment. We have worked on getting Mason to take a bottle during each feeding during the day and he is doing well. He averages between 20-30 ml with the bottle and prefers the Walmart parents choice nipple(recommended by the Slp). He is doing really well and has been a good boy for us. We are so thankful and so blessed. We have our well child appointment at our pediatrician tomorrow. Please pray that he doesn't get sick. I don't like having to take him but am geared up with tons of blankets to sit him on and purell and Lysol wipes. Hopefully I can update with more news tomorrow but so far so good!
Below is a pic of our first meal together ,Corbin and Mason at home for first time together, and of Mason chilling at the house taking it all in stride. We are so thankful!
It has been a long day but Mason's surgery went well. Surgery did reveal that his shunt was not working properly so he changed it out. He also wasn't happy with the fit in his belly so he fixed that as well (so he has a little incision on his head and on his tummy). Mason was able to be extubated before he even came back up to the NICU. Atleast he has perfected that! He was still very upset after surgery because he was so hungry. You could hear his tummy rumbling. When we got the ok from the dr. he took 20 cc out of a bottle and then was exhausted. I really think he hasn't got any consistent sleep for several days. He has been more content and able to sleep better today after surgery, still needing some tylenol for the recovery from the surgery.
Trying to get relaxed before surgery.
On the way down to surgery this morning.
As long as he continues to do well and recovers well we are still on schedule for coming home this week. I will have to admit that I am a little, well, a lot nervous. I am sure we will be good once we get into a routine. We better get some rest tonight because I think we are going to be in for a busy week!
Last night Mason had 80 cc drawn off his head and was a new man. It was very short lived. During that time he took a bottle with almost his complete feeding and was calm and quiet. Today has been more of the same agitation and fussiness. He isn't happy at all and acts like he is hurting. His head is full again and he is going to have the shunt revision tomorrow morning. His neurosurgeon is concerned he might have the blockage in his belly that is causing it to clog but the plan is to just take out the shunt and then put in a new one. We should know more tomorrow but please pray that this surgery be a successful one and that this would relieve his pain. It is very hard to watch your little one suffer and to not be able to help relieve the pain in any way. This picture was taken last night when he was content.
So it is looking more and more like Mason is going to have to have a shunt revision. This morning his head was bulging again. His head is do uncomfortable and so is he. He is not happy. They programmed the shunt to drain more and really it looks about the same. His neurosurgeon said that if it wasn't better tomorrow they would tap to help him and to see if that might open up the drain and unclog. If not better by Monday then shunt revision surgery. Please pray that this would work itself out on its on. Thank you as always for your prayers.
We have been busy trying to prepare everything for Mason coming home. We have also been trying to get Corbin potty trained (thank you to Stacey for helping us out)! Corbin has been doing pretty good and has only had a few accidents. Here is how we spend a lot of our time:
And of course we had Halloween. Corbin was a deer for Halloween. I know not your typical choice but that is what he wanted to be. I had been asking him what he wanted to be and we had looked at costume choices at Target and he just wouldn't say what he wanted to be. So one day I got the pottery barn kids catalog out (it has Halloween, Thanksgiving, and Christmas in it) and told him we needed to pick out a costume for him for Halloween. Still nothing. So later someone asked him what he was going to be for halloween and he said, "I'm going to be a deer." Of course I had no idea what he was talking about but when we got home he went and got the Pottery barn catalog and got it and flipped to a picture of a stuffed animal reindeer and said, "See Mommy, I'm going to be a deer." So a deer he was.
Mason has been doing pretty good. He had a great day yesterday picking up his head and looking around. He still hasn't been eating that great (thank goodness for the gtube) and has been irritable from the shots. He will take his hand and push the bottle away, crying. This morning though he was more irritable than normal and was not able to be consoled. That was when they noticed his head was pretty full and was bulging, pushing down on his eyes. They went ahead and did complete labs (which ended up looking great-platelets at a new all time high 460) so they were just thinking about his head. The initial thought was to hope that neurosurgey would come and change the setting on the shunt to drain more but the resident came up and said his body should hopefully reabsorb it and settle itself out. So we just gave him some tylenol in hopes that would relieve some pressure. After his tylenol, Mason took a super long nap and woke up in a better mood and thank the Lord his head looked better. We still need prayers that he will feel better and recover from his shots and start taking the bottle again but atleast his head isn't as full as it was! We are still looking to take him home next week and appreciate your continued prayers for continued healing, transitioning, and for us to be equipped with all the knowledge that we need. We will keep you posted!
Mason is starting to figure out how to use his neck.