We made it home and through the first night

We have now survived the first 24 hours home with Lincoln. The discharge process took almost all day so we did not leave the hospital until about 1:30. Shane has a mega busy week at work so my mom (Nena) spent the day with us.

I did not know she was snapping pictures or I would have smiled.
Lincoln was not so impressed with being at home. He slept for the first little bit until time to eat.

First tummy time. He is a little delayed in his reflexes and strengthen because he got very little tummy time in the NICU so we are working on it each day. He was not happy at first but then he gave up and was ok with that. Yes, his pacifier has a puppy attached to it. I love it and we call it his friend. (Thank Nancy and Glen for the cute pacifier!)

The family of 3 finally home. This picture was taken about 9:00 so I look a little "run down".

Lincoln and his daddy

Our day yesterday was pretty boring once we got home which was great! Today I had to go to his vitalstim appointment which he will have 3x a week. I am not too happy about it because I really just want to stay home in my jammies all day.... oh well, at least Lincoln is home now!

We are doing fine with this new phase. It is like starting out with a newborn but one that has learned some bad habits from the NICU (like being awake ALL day which I learned today from the speech therapist could be an acid reflux issue and he wants to be all the time) so we are going to start breaking some bad habits and set a schedule soon.

Thanks for all your sweet and cheerful comments yesterday. I can not believe he is already a month old (seems longer to me though!) I will post a cute one month picture later!

D-day is set!

Lincoln is going home TOMORROW!!! I can hear you all cheering as you read this (or sighing a bit of relief as I am sure my mom did when she heard!) Lincoln has been eating all his meals from the bottle since Sunday morning and the feeding tube was removed this morning. The "uped" his amount to a minimum of 75 ml and he has been doing at least 80 ml each time. They also changed his eating times from EVERY 3 hours to every 3-4 hours which helped a lot since he tends to sleep longer amounts in the night (thank goodness!) So with all that there is nothing more he needs here in the NICU! He needs his car seat study done (which he will pass since he was a full term baby) and his boy surgery, so we have about 24 hours left and counting!

Shane and I are thrilled beyond words! I am not sure how we will get through tonight, probably not much sleeping on my part!

I will update with new pictures soon since he is tube free...finally!

Birthday wishes!

Happy

Birthday,

Grandpa Nimz!

We are all a little sad that we are missing a great birthday celebration in KS with the Nimz family. Grandpa Nimz is celebrating his 80th birthday with his kids, grandkids, and maybe a few great grandkids. Shane and I were very excited about taking Lincoln to show off but we had to think of a new plan! Lincoln decided to send him a birthday wish for his special day!

We all agree with Lincoln about how sad we are that we can't be there!

A birthday wish to Grandpa from his newest great grandson!

We are sad we are missing the party but we can't wait to take Lincoln on his first trip to KS!





Grandpa Nimz-

We wish a happy birthday and hope your day is great! Enjoy your party! Have some cake for us!


Love, Shane, Carrie and Lincoln

Moving right along

Sorry to neglect the blog for a few days but I guess no news was good news! Lincoln has been doing great with his bottle feedings. They started him out on 4 bottle feedings a day and wanted to increase slowly depending on how he acted. Yesterday, he seemed very eager to eat so each time it was feeding time they tried and bottle and watched to see if he would take it. Lincoln took 7 out of 8 feedings yesterday, great news!!! They gave him a break at his 3 am feeding since he was sleeping but I bet he would have done it if they tried. He has been an eating champ and showing us all that he is ready to come home. Today at noon, I was getting his bottle ready (which takes awhile since I still learning how to mix everything without spilling) and I was apparently too slow because he was so frustrated! He worked himself up so much we had to swaddle him to get him off the edge then he ate the whole bottle in about 15 minutes! He as a hungry boy! The OT wants him to get to 8 feedings and prove he can do for about 2 days straight then he is good to go! We will see what he can do over the weekend!

Lincoln also started his vitalstem (sp?) yesterday. Basically (in non-medical jargon) an OT/ speech pathologist comes in and attaches 2 electrodes to his throat (with lots of tape, looks sad) and slowly increases the intesity of contractions that are being applied to the sucking muscles int his neck. They start at 0 and increase by .5 depending on the baby's reactions. They highest she will go is 25 but normally with baby's first time she will only go to 7 or 8. Lincoln did great for his first time. It took about 30 minutes and she was able to increase it to a 15 on the first time. He handled it great and actually fell asleep the last half of the session. Today she was able to go all the way to 25 and again he did great. Lincoln will have this therapy 3 times a week and it will continue as outpatient when he goes home. This therapy is still pretty new and the OT was so excited to finally to get to use in the NICU at this hospital so both sessions he has had there are MANY observers coming in and out to check it out...Lincoln is becoming a celebrity! We are hoping to see some improvement in his sucking and swallowing so I will update when I find out anything new!

Also on Thursday, he got his broviac line (IV in the leg that was in for antibiotics) was removed! So happy that thing is out!

See the last few posts have not included pictures, I decided everyone needed to see his sweet face. He is not looking like a newborn anymore but more like a baby. His cheeks are filling out and he is very curious of the world around him!

This is look I get EVERY time I get the camera out. I am hoping it gets better because he just looks concerned!
He is constantly playing with his ear or his hair. These pictures were taken right after his bath Tuesday so his hands were free for a moment but he is still sporting the sock hand look normally.

Since Lincoln is getting older they want him to be more stimulated throughout the day. This mirror is his favorite thing. He look and talk to his "friend" for a LONG time except when the mirror falls on him then he wants nothing to do with that.

This week has been encouraging and the nursing staff is telling us if everything keeps going as it is then we might be bringing him home sometime next week! They are watching his weight (he loses a little then gains it back and so forth) and want it to be more stable or increasing so they are now adding some powder formula with the milk for more calories. He has to show that he can eat all 8 feedings for a couple of consistent days and keep his weight up then he can come home! Pray that it will be early next week!

One step forward....and one step back

Lincoln has been doing great with his feedings. Last night at 9:00, we called to talk with the nurse about how he took his first full feeding of 65 ml with thickener. We were expecting to hear that he ate about 5 or 10, but we were shocked to her that he ate the ENTIRE thing and was wanting more! We were pretty proud. The night nurse said he finished the 3 am bottle but it took him a little while because they had to wake him to eat. This morning at 9 am, he took the entire bottle! He is off to a great start. The OT was just as surprised as us and believes he will do great when we start increasing his number of bottle feeds. She will increase his bottle feeds to 5 a day on Thursday (he is currently at 4 a day). The switch from 4 to 5 is usually pretty rough because he will not be getting a break between feedings but if he can do 5 then as we add the rest it will be easier. I was feeling pretty good about the day until......

The Dr. came in around 9:30 this morning and let me know that they had been watching Lincoln for quite some time and we were concerned with a noise he was making. When he was crying or drinking, he will make a small gasping, weepy noise (hard to describe in words) that was alarming to them. She wanted him to have a scope done to check his vocal cords because she felt that he might have a paralyzed vocal cord. (At this point, I was pretty panicky but I held myself together!) My mom's cousin, Amy is an ENT so the doctor let me chose if I wanted Amy to do the scope, which I jumped at that chance! So I waited all day for the scope to happen.

Amy came about 3:30 and proceeded with the scope. She found that he does have one paralyzed vocal cord. She can not tell if it was cut from surgery (which the surgeon did tell us it could happen) or if it was just stretched. This could be part of the reason why he is aspirating into his lungs but it is not the sole reason. There is nothing that will be done at the moment to fix the problem, most of the time the problem fixes itself. If in 6 months to a year, Lincoln is still having problems then he will have injections to the cord. He will have to see a speech therapist from now until he doesn't have any more problems (we are thinking at least through early elementary age, but who knows) and his voice could be raspy, rough sounding when he starts talking (my sister says he will just always sound tough!) He will more than likely have to visit Amy for other throat issues but she is one doctor I am happy to see! This is not the worst news we could have gotten from the scope but it is a problem and we do have to deal with it. Amy said he is also more prone to upper respiratory infections so we will have to be extra careful at daycare or during the winter.

This was disappointing news but it does not seem to be affecting his feedings (at the moment) and that is what we are focusing on. The NICU doctor did tell us of an electro-stimulating procedure that we can try with Lincoln. I am really to clear on how it works but I think it create a vibrating type movement on his throat that will stimulate his sucking reflexes. Amy told us it was worth a try and the speech therapist will do the procedure and it will not hurt Lincoln and we can see if it helps.

So that has been our news today. Shane and I are ok with the news, little disappointed but thankful that it was not worse. We are off the hospital now to kiss our boy good night...but we hear he is a night baby!

Swallow Test Take 2

Lincoln had his second swallow test today at 3:00 (actually this is his fourth but the first two were at the beginning of this journey and did not give us insight into when we could go home). My stomach was in knots all day and my mind was racing with "What ifs?" I tried all weekend to not get my hopes up and plan for the worst (no changes from last week) but it was too hard not to think of him coming home soon.

I am not sure if I have explained the process of the swallow test so I will try to briefly. They place him in this car seat looking seat and strap him in. The radiology machine is to his left and I stand in front of him with my "vest" on to feed him the bottle. (Shane and our OT, Amy, stand behind a clear glass wall to watch on the screen so they don't have to wear vests, hopefully all this radiation doesn't do anything major to me or Lincoln!) Anyways, the speech therapist stands behind me and mixes all the dye and hands me the bottle as the radiology doctor operates the machine. I have to keep Lincoln's head straight, keep his hands away from his face, and get him to drink from the bottle at the same time...pretty stressful! The speech therapist starts with just a bottle of breast milk and dye (not sure the technical name) and we watch the monitor as Lincoln drinks it. If he starts aspirating either to his nose or lungs then we add some of the Simply Thick to the consistency of nectar and try again. The speech therapist will try other size nipples (we were told to buy Dr. Brown's bottles because they are better, not sure this is true but they were more expensive!) to allow the flow of milk to change either slower or faster. Level 1 is the slowest and 4 is the fastest. Lincoln starts at a 1 and she tries out all different level nipples throughout the whole process. If he aspirates on nectar consistency then she goes to honey. This Simply Thick is just a tasteless, no calories gel that you can mix with milk to thicken it. There is nothing thicker than honey (at least that I know of) but you can make it honey and a half if needed. Each time Lincoln starts to drink one of the consistencies we (everyone but me because I am concentrating on Lincoln) watch and wait to see where it goes and they let me know if I need to take the bottle out or keep letting him drink. This is kind of irritating to Lincoln (I think) because as soon as he latches on, I have to take it away or turn it or something. So that is quick description of what Lincoln goes through.

Last week, EVERYTHING we tried from consistency to nipples went straight to his nose and large amounts! We were just hoping for some improvement. The plain breast milk still went to his nasal cavity but not as much and not as fast but still not great. Next we moved to nectar and the same results, little bit was going to the wrong place but not large amounts. Next was honey....at first (about 5 swallows) it was all going where it needed to be but it soon started to flow to his nose a slight bit. So she tried honey and a half and nothing went to the nose! She used a level 3 and 4 nipple which helped because this stuff is THICK!! I can not even imagine how Lincoln got any out of the bottle....I was proud! So the conclusion was made that he will start bottle feeding every other meal (he eats at 9-12-3-6 twice in a 24 hour period for a total of 8 feedings) with the honey and a half consistency to get him used to using the bottle again. The other 4 feedings will be through the feeding tube so he won't lose weight. Lincoln is supposed to be eating 65 ml (about 2 oz) at each feeding but the OT does not want to push him at the bottle feedings, so we will feed him until he tires out then the rest will be through the feeding tube. This made me thankful because it was pretty frustrating to me to watch him struggle with drinking this THICK milk and fall asleep and have the nurses commenting that is wasn't enough. The OT is hoping that he can practice this week with the thick "milk" then move to nectar and quickly get all the 8 feedings of 65 ml. Another swallow test was scheduled for 2 weeks from today but the OT wants to watch him daily and if she thinks he is improving with honey then we will have another test to see if he can handle nectar. As soon as he is eating all 8 feedings of 65 ml then we can take him home....it does not matter if it is thickened or not.

So that has been the news today. It is not the best news but it was an improvement from last week and gives us a plan to what we are going to do next (and not just wait...read previous post about my frustration with waiting!) Shane and I are hoping he catches on quickly to this whole eating thing and moves through his feedings quickly but again we are getting our hopes up. We were told that getting Lincoln to eat could be the hardest part of all this so we will see what this week holds. We are doing ok with this outcome because it starts the last leg of this race which we are grateful for but it is also a little disappointing because we could have one more week or two or however many it takes to get him eating fully.

Thank you for all the comments, phone calls, texts, thoughts, and especially prayers for today. They were definitely heard! I will keep you updated on how well Lincoln is doing!

Life on hold

Life on hold is the best way to describe our lives right now. Everyday the nurse practitioner comes in tells us "He looks great. We are just waiting until Monday" and my response wants to be "Thanks for your medical help" with a sarcastic eye roll, but I restrain myself. My dad put it great, he thinks I should say "No we are waiting, you are living your life." But again I just nod and say thanks for the update.

This last week and weekend has been extremely difficult because I feel like my world has come to a stand still as the rest of the world keeps moving. I am coped up all day in the hospital and not getting out in the real world. The world of NICU is a completely different world (don't get me started on that topic!) that has its own rules and doesn't mix with the outside world. I can not believe that is has almost 3 weeks since this journey began. Shane and I did not know that you could have your best time in your life and the worst part all mixed in one. Lincoln is getting close to his one month mark and it makes me sad. He is changing each and every day yet he hasn't even gotten to come home. I wish I could just freeze time until he is discharged.

I haven't been out in public much for the last 3 weeks for many different reasons. One, I don't feel like it. Most new moms get a chance to stay home and recoup with their new baby. This usual includes wearing jammies all day (probably because nothing else fits), sleeping when your baby sleeps to catch up, visiting with family who come to your house, and pretty much staying in your home and not getting out unless you want to. I have gone out of the house since day 1 of leaving the hospital and haven't had that time to fully recover. I am sure the nursing staff is tired of seeing me in warm-up pants and tees but I am beyond caring. I nap whenever we are home )which is a major reason why I have been terrible at returning phone calls, sorry!) but I am still exhausted. And we have so many family and friends that have yet to meet Lincoln which makes me very sad. Another reason I haven't gone out in public much is because I waited 9 months for the time when we go from being a married couple to a family of 3. Yet we seem like a couple but Shane and I know we are missing a major part of our family now. We finally ventured out to church today and quickly realized it was not the best plan for us. Through the entire service, we both were anxious to get to the hospital to see our boy. We felt a little guilty about leaving him alone this morning and the sermon was not getting through to us. We hurried out of there as soon as could and rushed to the hospital.

I felt that I am rambling with all of this but I think my thoughts are all on tomorrow. Monday could be a day of great joy if he passes the swallow test but it could also be a day of great disappointment if he doesn't pass and we have to wait another week. I have no idea when the test will be tomorrow because they will just "fit" him when there is time but I will update when I know anything. If you have a moment tomorrow, please say a prayer for Lincoln to pass the swallow test and start eating again.

So I have no idea when I will step back into the real world but until then I will continue to wear my warm-up pants and cuddle with my boy!

Here is the precious face that I can't wait to see tomorrow morning!

Saturday is meant for football

Shane maybe born a KS boy but he roots for Texas. I am not a huge fan of any team but I do love a great photo opt so since today was the big Red River Rivalry, I decided we would all dress the part. I had a onesie made with the Longhorn since all the ones I saw were too big and Shane and I wore shirts to support as well. Off to the hospital we were to get out little man ready!

Lincoln supporting the Horns!
Mommy and Lincoln...Shane was taking the picture so we are going on zooming in to not get all the wires!

Daddy and Lincoln....Lincoln wanted nothing to do with the camera

Sporting his gear!

Lincoln was D-O-N-E with pictures....this was actually in the photo session after I had already put the camera away. I got it back out to snap some more and this is the way he reacted. Shane knew how he felt, I think he was just confused!

So that has been our Saturday so far....Shane did sit in the waiting room for just a little bit to watch the start of the game but returned quickly to catch Lincoln up on what he is missing!

Nothing new on the medical part of Lincoln....we are just waiting! That is all the nurse practitioner will say when she comes in "Just waiting until Monday", I want to reply "Then we will just wait at home with him. Thanks!" But I don't because they are sick of hearing it from us! So until then we will cuddle him at the hospital!

Quirky features of Lincoln

Nothing new from Lincoln's world. He is still eating from a feeding tube 8 times a day of 65 ml each...seems like a lot to me! The OT wants us to hold him while he is "eating" and make him use his pacifier so he associates sucking and his belly getting full together. He will use the pacifier for about 5 minutes then spit it out (I think because he realizes that nothing is coming out but the nurses say that is not the reason). Tomorrow we are going to try and dip the pacifier in the milk say he can taste the milk but not have enough to aspirate on. Tuesday he slept most the day but today he was much more alert and back to his self. He very rarely cries (unless you are changing his clothes, which I am doing everyday! I can't let the clothes he has just waste away in the closet!) but he makes a little noises that we think are him complaining which he does a lot...I think he will be a complainer, wonder who he gets that from?! Other than that, nothing too exciting. We just hang out all day and wait for the next day to come!

I haven't taken his picture this week because I think the feeding tube is sad looking but I will tomorrow. These pictures are from the weekend when we were bottle feeding and they are pretty cute!

Here is Lincoln's eye roll...he does this a lot when you talk to him. I think I will be getting this look a lot more in about 13 years!
Lincoln has one Spock ear ( a point at the top), it is on his right ear. I don't have it but my sister, brother, and nephew have it so Lincoln belongs with us! Also his left ear sticks out more than his right, his cousin, Eli is the same way so they have something in common.

And here is his sweet smile. Shane swears he is smiling at him but I broke the truth and told him that it is just gas....he doesn't want to believe me! But whatever it is, it sure is sweet to see!

Well that is about it for today. Thanks for all the encouraging words, Shane and I read them daily and are blessed to have so many people who care for us and our baby boy!

Pooped out!

I think the best way to describe today is exhausted! Apparently Lincoln had a rough night of being crying most the night because he was hungry. His last feeding was at noon on Monday, I would be cranky myself! They got the feeding tube in today about 8:00 am and he has been sleeping all day. He gets fed every 3 hours through the feeding tube so his belly is full today! This is not the same baby that we had this weekend but I am hoping after a day of rest and around the clock feedings he will be his pleasant self tomorrow! The feeding tube is through his nose today so it looks painful but it will allow him to keep practicing with his pacifier for oral stimulation. Lincoln does have to wear the socks on his hands again because they do not want him to pull it out. Other than that today has been a slow, quiet day. He got moved to a secluded part of his NICU pod (like an enclosed room) which helps with noise factor.

So we are spending this rainy, dreary day cuddling which is what we both need from a night of crying that we both had!

Terrible, Horrible, No Good, Very Bad Day

The only way to describe today was it sucked. (Sorry if you are offended by that word but it is my blog and my feelings and that is the only way I can describe it nicely!)

The past few days at the hospital we thought we are able to see the end in sight. Lincoln was able to eat and was getting better each day. He sounded kind of congested but the nurses thought it was just his reflexes getting used to eating. But today we found out the reason for congested sounds, but I should start from the beginning to reveal all the reasons why today was no fun.

We have been pretty frustrated with the nursing staff in the NICU being inconsistent with many aspects of Lincoln's care. We were getting various opinions and ways of feeding Lincoln that were "best for me". We were tired of being talked down to by a few nurses, changes in Lincoln's meds and such, and just general dissatisfaction of the whole thing. Don't get me wrong we have had some amazing nurses that we miss and are sad to see them working with other babies but the last few days we have been unhappy. Yesterday they made the decision to put Lincoln back on nutrition through his IV in his leg because he was losing weight (5 oz....I though a little weight loss was normal but guess I am not a nurse) which frustrated us because we knew it would set him back a few days. They also decided to reschedule another swallow test because they were afraid were the congested sound was coming from. We were fine with the swallow test being redone but we figured it come out great and then we could go home!

The surgeon came back and looked at Lincoln and decided that his job was done with Lincoln. The surgery sight was healing and looked great so he was passing Lincoln off to the OT (occupational therapist) because now it was all about feedings. That was good news to us because we thought Lincoln was getting stronger at eating each day. My MIL was up at the hospital with us and she knew our frustrations with the nursing staff so she let our concerns be heard. She complained to the Nurse Practitioner (pretty close to the top of chain of command in the NICU and one person we are a little annoyed with) about the inconsistency of the nursing staff and the complaints we had about the noise level in his pod because he wasn't getting any sleep. I knew if I complained then I would just cry so it was great that she did it and not me! Just as we finished complaining Shane was coming into the hospital and caught the surgeon at the elevator and voiced our complaints again...so they heard them twice. Once the surgeon heard the complaining we saw some changes! We were moved to a quieter part of the pod and the nurses were much kinder and left of alone pretty much the rest of the day. I guess we were heard.

Now for the really "sucky" part. Lincoln had a swallow test at 3:00. At his last swallow test on Wednesday, the OT and speech pathologist were absent so he was not assessed properly (again another frustration) so today they were in the test with us. The agenda for today's test was to try different consistencies of the milk (using the Simply Thick which we have been using the last few days of feedings) and try different levels of nipples (he has been on the level 1 which is the slowest flow so he was having to work hard to suck). We started out with just breastmilk using a level 1 then changed the consistency of the milk or the nipple. We watched were the dye (also in the bottle) went and that determined what to use next. Each time we tried the test Lincoln was aspirating into his nasal cavities. The speech path said she had never seen this much with a baby or with an adult and she was shocked that none was coming out of his nose! Lincoln would sneezed a few times after he ate but we figured it was something silly he did and we were not concerned about it. She said that this could cause major issues in the future from infection to eventually causing major damage. As he was aspirating into his nasal area, it would sit there until he was done then go down either into his lungs or to his esophagus. They were not too concerned with the aspirating straight to his lungs because it was very little and they believe he will soon outgrow it as he heals. The speech path feels that Lincoln is still healing and he is guarding his esophagus since it is probably still sore from surgery and that he will correct what he is doing. The only way to "fix" the problem is to reinsert a feeding tube and let his esophagus have more time to heal without losing any more weight. This was heartbreaking to hear. I held it all together until we were back in his pod then I lost it. The NICU doctor came and talked with us and said that the radiology doctor will have to reinsert the tube because he will be able to do it without hurting the surgery sight. He will not be back until tomorrow morning so we have to wait until then to do anything. Lincoln will probably be cranky tonight from being hungry so I am a little relieved to not be there and hear him suffer. We will have another swallow test on Monday and see what he is doing then. If he is swallowing correctly then we can take him home in a couple of days after that if not then we have to just wait until it is corrected. There is no surgery to fix this problem so it is just up to Lincoln! After talking with my aunt, Amy she told me that there are oral stimulation exercises to do with Lincoln so he will not "forget" how to eat. I am hoping to start these tomorrow with the OT. So now we are playing a waiting game until next Monday when the swallow test is redone.

This has been a very emotional draining day. We went from pure frustration to upset and heartbroken in a few hours. Tonight driving home was almost as hard as leaving him the first day we were discharged. I have so many emotions right now from heartbroken to seeing my baby in the hospital, guilty for leaving him in a hospital alone for night, frustrated with feeling like I need permission to do anything with my baby, jealous when I see a baby getting discharged, upset that we are dealing with this, angry that I went through all the mess of being pregnant and csection and not getting to enjoy a baby at home, and so much more. I know we are blessed to only have the issues we have because there are so many other major issues that he could have but it is hard to see the good in this. Shane and I are going to get through this together but we hit a bump in the road and are dealing with it. My prayer tonight is for Lincoln to heal this week and pass his swallow test next Monday and for Shane and I to have the strength to get through this.

So today has been no fun but I am looking forward to seeing Lincoln tomorrow because that boy sure has a great personality! :)

Until next time,
Carrie

Eating Camp

Who knew that "teaching" a baby how to eat would be so frustrating?! Well it is!

Lincoln is doing great with his recovery from surgery. After the swallow test, he has been losing tubes (which is great). He only has one IV left in his leg that will remain in until right before we take him home because he is still receiving antibiotics through it, but other than that (and the heart monitors) we are tube free! It is much easier to hold him!

But Lincoln is having a little bit of trouble learning how to eat. Thursday was his first real day to eat every 3 hours. He was aspirating still in his lungs and eating too aggressively (swallowing too much) which would cause him to choke. So they decided to call the OT (occupational therapist) for some help. She brought with her a TON of information (none of it written down so my head was spinning with all the info!) and some helpful tips to help him eat. After she observed his eating behaviors, she decided that Lincoln needed to put on Simply Thick. It is a gel that gets put into the milk and makes the milk a nectar texture. It requires Lincoln to work harder which will slow down his eating and it will flow to the esophagus and not to his lungs. Basically it is like drinking a shake through a straw. If Lincoln can not eat better with the nectar texture then they can make it a honey texture to where he REALLY has to try hard to eat. Lincoln also has a hard time staying awake for his feedings. He is currently eating every 3 hours and is only allowed to eat for 30 minutes. He needs to be eating the minimum of 45 ml but they want him to be eating 60ml each time. Lincoln usually starts his feeding doing great then will get sleepy and will not work at all! That is frustrating! I think Lincoln has a hard time falling asleep during the day due to the noise in his NICU pod (the baby girl across from him is a preemie and requires a lot of attention, which means a loud ventilator and many nurses coming in and out to check on her) so he jumps at any noise and has to be go back to sleep. I am pretty sure this is the cause of his sleepiness in the day because the nurses at night say he eats great and they never have a problem getting him to stay awake to eat. So that is frustrating to me as well because he can't sleep due to noise which causes him to not eat which is keeping him the NICU. The nurse practitioner told me today that she would try to find a quieter place for him but I am not holding my breath due to the large amount of babies in there. We did take his noise machine to the hospital and the night nurse used it and he was sound asleep this morning when we got there so I think it helped (Thanks for the tip Paige!) The nurse told me today that she does not want to try nursing because she thinks it will be too hard for Lincoln, which is different from what the OT said, so I am not sure where are on that stance. The surgeon comes back on Monday so I am hoping Lincoln is eating well enough by then that we can take Lincoln home!

So that is all we know now! We are just trying to get him to eat without falling asleep. I think his cousin Phoebe needs to come and teach him how to eat...that girl can eat!

Sweet Lincoln....the OT thinks his "worried look" is precious, I agree! This boy always looked concerned or worried about what it is going on!
Giving Lincoln a pep talk before eating

Just a sweet sleeping picture....look no feeding tube! He has Shane's dimple chin.

Thanks for keeping up with us! We can almost see the end in sight, which is exciting! Sorry that my blogging is not daily. I am at the hospital all day (usually from 9am until about 8pm) and when I get home I crash! I will try to get better!

Thanks again for all the prayers!

Until next time!

Carrie

Got milk?!

Lincoln had a big day today! It started at 9:00 with his swallow test. As soon as I got the hospital(about 8:45) they were loading him up in an isolate bed on wheels to take down to radiology. The nurse said I could go with him so I got to go along on his field trip. He was wide-eyed as he was wheeled down the hallway and "oohed" and "aaahed" over in the hallway!

In the radiology room, he was placed on a HUGE table (it was kind of a sad sight but I got to hold his hand, or at least his sock on his hand) and the radiologist had him drink a white dye from a bottle. It was neat to see the dye on the screen flow down his body to his tummy...yep, no leaks!! It was very exciting! Lincoln's nurse did a great job of translating all the medical dialogue from the radiologist. But they did find one minor complication on the test. When Lincoln swallowed the dye he was aspirating (sp?) a small bit into his lungs. For all you none medical people (like I was) that is when liquid goes into the lung which can lead to big problems if not solved. The nurse explained that this could be caused from a couple of things, either Lincoln needs to learn how to swallow properly with the help of an occupational therapist or the aspiration was caused by the feeding tube that is going down his throat and will be solved when they take it out. I was a little bummed when I heard this, I wanted them to say "He looks great! You can take him home tomorrow!" (wishful thinking I know, but I can dream) but the nurse reassured me that though it is abnormal and can be a concern it was very common and very treatable. She said many times they just thicken the milk in a bottle which makes the milk go to the stomach until the baby learns to swallow correctly. Once we got back to the NICU we waited to talk with the surgeon and what was next to come.

The surgeon came in about 10:30ish and quickly (seriously this is the quickest doctor I have ever met with) told me that we would starting Lincoln on breastmilk TODAY through a bottle. I was thrilled to hear this! Lincoln now eats every 3 hours from milk that I have pumped with a bottle. He also said that if nothing comes out of his chest tube (drainage from his surgery site) then it will be removed tomorrow. This is also great news because this is the tube that is keeping us from being able to hold him because it is in his back and can cause major infection if it is moved. So the sooner it gets removed the sooner we can hold him! The doctor does want to keep his feeding tube in because if Lincoln doesn't get enough nutrition then he doesn't want to reinsert the feeding tube down the surgery site. This makes sucking harder for Lincoln because he has a tube in the way but he did well!

I had a doctor's appointment at 12:15 so I figured I would miss Lincoln's first attempt at eating but when I got back to the NICU at 1:00 the nurse had pushed back his feeding time so I could help. Lincoln is a champ at eating! When he first discovered that food was coming from the bottle, he was eating too fast which made him start to choke so we have to slow down his eating and make him take a breath! Lincoln does not like the burping part, especially since he has a nasty wound across his back that is trying to heal. I was a little afraid to burp him at first so I got some good help from his nurse. I got to feed him twice today and Shane got to feed him "dinner" around 6:00 when he got there. It was great to see him finally eating.

Also Lincoln got moved from an isolated bed to an open bed, which means his bed doesn't have a top on it and we can touch him as much as we want! It was great to be able to touch him since we can't hold him yet due to the chest tube. This open bed does cause Lincoln some restlessness. His NICU pod got full today with other babies (he was only 1 of 3 before today now he is 1 of 6....and he is the least sick!) so Lincoln "jumps" and wakes up to any sound in the nursery. I hope this gets better when he is home and away from other crying babies and constant beeps. It was even harder leaving him tonight because I knew he would not get much attention from the nurses since he is the healthiest (which I am grateful that he is the healthiest) and it breaks my heart to know that he is up there all alone (makes me cry just typing it!) I want to spend the night up there but I am sure Shane would not let me since he knows I definitely wouldn't sleep up there.

Now to some eating pics!

Here is my first attempt at feeding Lincoln. It is a little difficult to hold him at the angle in his bed but it was worth it!

I love this picture of his hands folded while Shane fed him!

It copied one twice again!

Shane's first attempt...he was a natural. This was Lincoln's GREAT nurse, we are sad that she will not be back until Sunday! :(

Well those are the updates for today! We are hoping for good feeding the rest of the week and weekend. The surgeon is out of town now until Monday so we are hoping that Lincoln gets this eating down so we can set a discharge date soon! Fingers are crossed!

Until next time!

Carrie

Swallow test is scheduled

Today has been a day of good news. First I was able to sleep in which was nice. When I finally O got to the hospital about 11:00, I was greeted with good news. Lincoln's nurse said he had a great night and he was wake when I got there. Seeing his blue eyes in the morning will make anyone's day! The development specialist came in to check his reflexes and sucking. She said she had been hearing about this giant baby boy in the nursery who had great color and was beautiful...I have to agree with her except the giant part! Lincoln's reflexes are good but they are a little weak which is normal for a baby who has been sedated for the last 3 days and they should strengthen as the days pass. She was watched him use his pacifier and says he is using it as he should but will not strength which will happen as he becomes more alert. That is all good news!

Dr. Lanue (the surgeon) came by and checked on Lincoln. Everything looked great and he hasn't had any drainage from his chest tube which is a good sign. The nurse later told me that if it stays clear for a day or two then the doctor will clamp it and let it stay for a couple more days then it will come out! This is the tube that is keeping us from holding him. The doctor wants to keep it in if it is working but since nothing is draining then it can cause infection. His drainage has been clear but he also hasn't had any food either which changed today as well. The surgeon put the order in for Lincoln to get 2 tsp of Pedilyte (sp?) every hour. This boy is HUNGRY so I am sure he will be happier now that he has food. If his body tolerates Pedilyte then they will start using breast milk in a couple of days. Now for the great news...Lincoln's swallow test is scheduled for tomorrow at 9 am! The swallow test is where they will inject a dye down his throat and make sure the esophagus doesn't leak. If everything goes well, then they will start the feeding process. I am praying that everything goes as smoothly has it has so far and we can start the feeding process. We are still looking at another full week in the NICU if not a few days longer. But I think after tomorrow then we might get a timeline to see the end of this tunnel.

Today was a day of promising news. It is harder to leave him now at the hospital now since he is acting more like a "normal" baby. Before when he was sedated, he looked and acted sick so I am ok with leaving him there because he needed to be there. Now he looks and acts like a normal baby who cries, looks around, responds to Shane and I, and other fun baby things so it is hard to leave him at the NICU. I know his battle is not over yet so we are still praying for a quick recovery.

Say a quick for Lincoln tomorrow at 9:00 for a positive swallow test! No pictures, sorry...hopefully we will get some good ones tomorrow!

Until next time!
Carrie

The sweetest sound today

Today was a big day for Lincoln...his ventilator (breathing tube) was taken out!! We were told Sunday that they were going to remove it Monday morning between 9 and 10. I thought it would take awhile and they would just do without me there. I slept later then I meant to and I got a call at 8:30 from the NICU nurse asking if we were going to be there at 9:00. I told them we were running late so my MIL and I rushed around to get everything together ASAP. Apparently they were waiting on us because as soon as we got there, we got the ball rolling. The procedure took a whole 5 minutes but there were a lot of people of watching and the nurse said she was going to get the party favors passed out for this major celebration. As soon as the tube came out, Lincoln was a completely different baby. His eyes were wide open and looking around and he made the sweetest sound to my ears.....he cried! I know most new moms would be tired of hearing this but I have only heard him cry one other time (when he was first born) so this was a great sound to finally hear. His cry is quiet and very hoarse sounding because he is still very sore but it is so sweet to hear. He took to his pacifier right away and he can go to town with that thing once he figures out what it is. I asked the NICU doctor when I could hold him and he said if I was good then he would let me today! I was on my best behavior. Shane made it up after the tube came out and we waited and waited for the nurse to let us hold him but she was tied up with another baby, so we went to lunch. I was sad that Shane wouldn't get the chance to hold him but he reassured me that he was ok with it as long as one of us got to hold him. After lunch I finally got to hold my boy. This was a big deal to me since I can count on one hand the times I have held my 1 week old baby (as of tomorrow)...that makes me sad to think about. My MIL captured a few pictures of that precious time. I got to hold Lincoln for about an hour and it was wonderful! The nurse he can only be held once a day because they are trying to keep him calm for the most part because he is still being fed though an IV in his leg and they are afraid that the more he is stimulated then the more hungry and cranky he will get. I do not blame him one bit...I would be hungry too! The surgeon poked his head once today and quickly said everything looks great and they might try to feed him breast milk through his feeding tube tomorrow but the NICU nurse hadn't heard that and said they would need to chat first before anything is done. So that is about all we know now, but we are thrilled at where Lincoln is today. He is right on schedule and the next hurdle will be Thursday for the dye test (to check if the dye goes down the esophagus correctly). So pray that the dye test goes smoothly because the next time is eating and that will get him home in a couple of weeks!

Now onto what is most important....pictures!
Here is Lincoln moments after the ventilator was removed....doesn't he look happier? I think he does. His little cheeks were so red and chapped from the gauze.

Momma and Lincoln

He has to have socks on his hands because he tries to pull the feeding out. He looks like he has numbs for hands.

Shane didn't get to hold him but the nurse took the top of his bed (looks like a submarine) and let the side down so Shane could partly hold him tonight. (We had wonderful nurses both day shift and night shift today. None of this stimulation would be happening if we had grumpy nurses so we are very thankful for the nurses we had today!) You can tell in all the pictures of Shane and Lincoln who is the center of Shane's world now...I think I got bumped but that is ok!

So that it is for today....waiting to see what tomorrow holds!

Until next time-

Carrie

Another day gone by

This picture was taken before surgery last week but I have a hard time posting update without a sweet picture! When he did get to lay on his stomach, he sticks his hiney in the air like I used to sleep as a child...he is partly me!

Today was a better day than yesterday. I spent time with family, ate yummy home cooked meals prepared by my family, took a nap, got to see my boy 2 times today, and went to Wally World! It is sad that after not being in public for almost a week I chose WalMart but we were picking up pictures so that is where I went! It was not exciting and very busy so I was tired when I got home.

Lincoln is doing great in his situation. After talking with the surgeon today, we learned that they will start taking his ventilator out around 9:00 tomorrow morning. This can be a slow process because they have to monitor how well he responses to breathing fully on his own. Tonight when we saw him the nurse said he was breathing above the ventilator which is great sign! They will test his gas levels tonight at midnight and if all is good (which it has been so far) then they will start the breathing process tomorrow morning. They will keep him sedated until Thursday because they are afraid he will wake up and be hungry or cranky (who wouldn't' be?!). If he gets uncomfortable then he might start to thrash around and damage his esophagus that is still healing. So we are still watching a sleeping baby for a few more days. He is responding more and more to noise and lights. The nurses (really only the few grumpy ones) get annoyed when we talk quietly over his bed but the surgeon says he is doing great so I only listen to him! (Can you tell what makes my day hard?! Grumpy nurses!) Tonight he kept opening his eyes wide when the monitors would beep (which happens CONSTANTLY) and roll his eyes like he was annoyed to be awaken... I love it! No major news other than the ventilator news, but I guess no news is good news in his situation. I will be heading to the hospital before 9:00 tomorrow and waiting around to see what happens so I will update when I know anything exciting!

Until next time!
Carrie

"Where is my warm cozy place?"

Before Lincoln had surgery, we got to see his pretty dark, blue eyes a lot. He seemed to always have the same look on his face....concern. I think this comes from Shane. I know his brain he is thinking, "Where am I? Where is that warm cozy place? And why are all these strange people touching me?!" I just love his concerned little face with his worried eyebrow look....reminds me of Shane!

Today was a pretty rough day, I was discharged about 9:00 this morning but the nurses let me hang around until I was ready to leave. We finally left the hospital around noon. I am not sure which was harder, watching the nurse take him to surgery or leaving my baby behind in the hospital while I went home. It was very hard for me. My family and Shane's mom were all at home to help me and Shane and it was a blessing. I think if it had just been Shane and I then I would have sat in Lincoln's room and just cried. I was able to take a nap and rest all day which was nice. My mind has been on Lincoln all day and each time I walk by his room it makes me sad and I know it will be a struggle until he comes home. We went back to the hospital this evening and it was comforting to his sweet face again....it was only half a day but I missed that sweet boy! The nurses say he is doing the best he can in his situation. They are slowly still taking him off his sedation so he is starting to "wake up" a little more. He will open his slightly but you can tell that he is still very "groggy". My mom feels that he is probably have crazy, colorful, drug-induced dreams at the moment. It is better see him now than he was a day ago. The day of surgery and yesterday he was still and pretty lifeless which was hard to watch. Now he is moving his hands and feet (if you know me well, then you will be understand when I say he moves his feet like me when he sleeps!) a little and it is fun to sit and watch patiently until you see him move...it is the little things to bring me excitement! We are not supposed to be stimulating him and it is so hard to sit and not touch him, we pretty much have to keep our hands in our pockets to keep from reaching in and keeping him up! He looks so cuddly! We have snuck a few touches while the nurses aren't watching...Shhhh! Don't tell the nurses! When Shane or I talk to him you can see his little body twitch or eyelids move, I believe he knows our voices. That is about all the updates we have. Nothing major should be happening until Monday or Tuesday.

Here is picture of his long, skinny feet. My mom's side of the family has long features and I think Lincoln inherited the long fingers and feet from them. This picture was taken before the IV was taken out of his foot today. He is IV free on his feet...YAY!! It looked like it hurt!
Not sure why this picture posted twice but it did so you can see his sweet face again!

I love this picture of Lincoln with his "cuddle doll". I was told to wear this cloth doll under my shirt for 24 hours after Lincoln was placed in NICU. Now they place the doll on his face so that my scent can be with him all the time. I think it is very sweet and it is funny to see his face all covered up. We can take it off when we go see him but it stays on all the other times. So this how Lincoln spends his days and nights under a heat lamp. Looks so relaxing to me...minus all the IVs and tubes!

Well that is about it from the Nimz house. We are just trying to get through each day (sometimes the hour!) and work our day around going to see him at the hospital. It is still hard and I don't think it will be get easy but each day that passes means we are one day closer to getting him home!

I don't think I can say it enough but thank you to everyone who reads this blog (whether you comment or not) and prayers for our baby boy. We can not express how much it means to us!

Until next time,

Carrie

Losing "hookups" one at a time

We don't have any major changes today. Lincoln has been responding "unusually well" to all the meds and sedation as the nurses put it today. They have lowered his amount of pain medication so that he will start breathing more on his own and eventually start waking up slowly. He is still very "out of it" and can not be touched because we don't want to stimulate his body yet. Tonight when he went down to see him, he was moving his legs and hands a little bit which was nice to see after 24 hours of stillness. His nurse is watching him carefully because she does not want him to thrash his head and chest around and pull on the surgery site. They have taken out one IV from his right hand and are thinking of taking the IV from his right foot tonight. His right hand is pretty swollen so I am assuming his foot will be as well when the IV comes out. His face looks a little swollen to me but I am told that it is very normal after surgery. The nurses have been great today and tonight on keeping us updated on everything that is going on and I am so thankful for that. The next step is to wean him off all pain medicine and "wake" him up sometime Monday or Tuesday then see how his body reacts. Then Thursday will be a dye test, where they will inject a dye into his mouth down the esophagus then to the stomach. If there is no leakage then we will start feeding, if there is leakage then we wait until the esophagus heals itself. That can take a few days or a few weeks. So that is what we know now. We are thankful for the good news we are hearing from the nurses.

TMI for some......I have been pumping since Tuesday and it is going much better than I anticipated. The nurses are surprised as well as I am doing under the circumstances and I will continue to pump and freeze the milk while he is here in the NICU. After the dye test next week, we will start using my milk in his feeding tube then eventually try nursing. I am very thankful that pumping is going so good because it feels like this is the only thing I can do to help Lincoln right now.

Tonight has been a rough evening. I am not feeling the greatest due to my incision site (either from sitting up the wrong way or from laughing at my family too hard, I think it was the laughing) but whatever the cause I am not feeling great. And I am struggling with the thought of leaving the hospital tomorrow. Tuesday morning I could not wait to get home because I would be bringing my baby home with me but now that is not the case. I am going back home with a nasty scar and no baby in my arms, that sucks! Today I watched as 22 moms were wheeled out with their new babies to start their new lives together and I knew all day that would not be my experience. I know that Lincoln is in the place that he needs to be get better but it hurts to know that I will be 20 minutes away from my 4 day old baby boy. I will coming up everyday (actually multiple times a day) to see him but it will not be the same. I am not sure how I will deal with it all the next few weeks but I know it will be hard. I am praying for God's strength to get me through it and help me be the strong momma I need to be for Lincoln.

So this has been our day today....struggling with knowing that I am leaving my baby tomorrow but also being thankful for the progress he is making. Please continue to keep Shane and I in your prayers as we cope with this new stage of parenthood that we were not expecting. And also for Lincoln as he continues to get stronger each day to come home as soon as possible.

More Linc pictures

I finally got a computer to cooperate and let me upload pictures. Lincoln is sedated in the NICU on heavy medication. All his vitals are great and the nurses say he looks great. He started to wake up after surgery so he has been heavily sedated since then and he is in his "happy place". Here a few pics before surgery this morning.

I am going to take monthly pictures with his monkey and I wanted to start with a newborn picture, so today seemed like a good day to take it. All the nurses loved his monkey.

After his temp was taken and diaper was changed for surgery, the nurse let me hold Lincoln skin to skin. It was WONDERFUL! I am still not sure how I let him go to surgery after that. (Lincoln's day nurse today, Susan, is great! I am sad to see her leave tonight. She was so helpful in explaining everything before and after surgery and stayed with him during surgery. I have made an attachment to her.)

Here is Lincoln after-surgery. My mom counted and he has 13 "hookups" in all. This is right after surgery when he was starting to wake up so his eyes were opening. They didn't want him to start moving so they sedated him more. It is very sad to see my boy like this but he is a fighter and is getting stronger everyday. We can not touch him so that is very hard but they say by Monday we should be able to.

Thank you for all your prayers! Lincoln needs all the prayers he can get so keep them coming. His next battle is getting food down the right way which won't start until next week.

Surgery news

The nurse just called and reported that they were able to connect his esophagus. The best news to receive! He will still be in surgery to attach a feeding tube for him to start using until he can eat on his own and he is getting an IV in his leg for antibiotics. He should be back in NICU in a couple of hours and we can go see him again. We have been warned that he won't look as good as he has been because he will swollen and will have his breathing tube in.
I will update more when I see him in recovery. Prayers are needed now that he will start feeding properly so he can come home!

Thank you for all your prayers!!!

Lincoln is in surgery

Lincoln just went to surgery. The surgeon is thinking it will be about 2-3 hours, so it will be this afternoon before we know anything. We were reassured by the surgeons and nurses that Lincoln is in good hands and they are predicting great outcomes.
Shane and I got to hold him and love on him before he went to surgery which was great after the night we had. Lincoln has an excellent nurse today who put Lincoln up close to my neck and it was the greatest moment in my life. Shane had to sign all the constent forms and talk with the doctors because I was not letting my baby go!
The nurse just called and said Lincoln was sedated and they were starting. Please keep Lincoln in your prayers for the next few hours. I will update as soon as we know anything. I will try and post pics soon but the computer is not cooperating.
Carrie