Tuesday, August 30, 2011

Week 38

We have had every nurse in the NICU. Most of them are quite friendly and do their jobs in caring for the boys; I have very few complaints about any of them. Sometimes one of the boys will get a nurse who goes far beyond feeding, changing, and taking vital sounds. They connect with my kids and me as well. Through the countless hours I have spent in the hospital; I have nurses have become my friends. As happy as I am for the day to come when I bring home every last boy; I will miss the nurses who have been there with us all from day one on June 6th. Keeping continuity; the boys tend to get the same nurses when they are scheduled. Those nurses tend to form an attachment. No one has gotten more attached to a boy more than one nurse named Sheila. There has been very few and far between days that Sheila has worked when she was not assigned an Evans quad. She has taken care of Camden from the first week of his life and to see how she interacts and loves him as well as her making him happy; is a wonderful sight! Sheila had the great idea of setting up a photoshoot to take pictures of the boys altogether. She made it happen. On a lazy Sunday the NICU became a "set". We picked coordinating outfits, laid out cute blankets and let the fun begin. Sheila brought her camera and took the most precious pictures of my little ones. She captured their personalities which have grown to be so distinct. If she only knew how much I appreciate her doing this for my family and the special place I will always hold for her in my heart (and I am sure Camden will too!!!)!

Done!!!! What I have been yearning to do for months is now complete...my nest has been made for my four little blessings!!! What a relief and with just days to spare!!! Even though we have been in the NICU for 11 long weeks of emotions, setbacks, milestones, etc...it still seems surreal that the day my boys will come home is getting sooo close. I was told at the beginning of the week that Keaton would be tentatively coming home on Friday. This is just what I needed to hear; I flew out of the NICU to home to bring Keaton his car seat for him to do the car seat challenge test! This week it has all caught up with me. From the exhaustion from the move, the roller coaster of emotions, just everything has really started to wear me out. As much as I love spending time with my boys; I am over spending my time with them in the NICU...over hearing negative setbacks, over having to ask for permission to hold, feed, bathe my boys. So hearing the news that I was going to be a real mommy on Friday; elated me.

I was overwhelmed with the exciting thought of getting to bring home a baby!!! So much so that I had to go shopping for all of the odds and ends and for a coming home outfit for my big boy. From the setting up of the changing tables to the packing of the diaper bag; I was ready as I would ever be!!! I walked in on Thursday morning right over to Keaton to talk all about what home would be like. His nurse walked over and hearing my excitement of his homecoming; teared up herself to tell me Keaton was not coming home. Crushed. I was devastated. I should know by now how fast things can change and even told myself not to get overly excited as setbacks happen just as fast as a milestone is reached. How can a mommy of 11 weeks not get excited over finally bringing home one of her stinkers?? After a late night feeding, Keaton had a brady and d stat and had to require oxygen. This required him to be in the NICU for another 3-5 days at a minimum without any other events occurring. Even though it was just days, after 11 weeks, I just couldn't see the end in sight.

Bad news began to get better on Friday. i was there while the doctors were rounding and was told that Keaton would now come home on Sunday as long as he continued without events. Not only would we get Keaton; we would also be bringing home Camden!!! The only thing Camden had to do to come home was to take all of his feeds. It took him having another nurse I have come close to to work with him instead of tubing his feeds. At the end of her shift she had gotten him to take all feeds from a bottle so the feeding tube was removed; this forced the following nurses to not be lazy with his bottling. Kristie knew what she was doing and knew that Camden would be successful if given the opportunity to. TWO BOYS coming home!!!! One is great but two is just DANDY!!! After the set back with Keaton; I should know not to get too excited; but really???!!!! This wasn't the only good news we received. Each boy also had an eye exam and Grayson's right eye which showed stage 3 of ROP had resolved and was stage 2. This was great!!! He as well as the other boys will be followed closely still but the high threat of getting ROP at an aggressive and dangerous stage has now subsided. 

All I had left to do, was pick up the "here and there" items for the boys coming home and pray that they WOULD come home. In doing & preparing I had to stop to give thanks for my blessings times 4!

Peek a Boo! Grayson found you!!!


Brock & Keaton

Tuesday, August 23, 2011

Week 37

WOW!!!! Moving while having four babies still in the NICU is a daunting task!!! Well....in the same breath; let me say that I am oh so thankful for having the incredible NICU staff to allow me to move into the 5 bedroom (yes 5!!! and so much more space to set up and make having four babies a little easier!)! home on main base while knowing that my bundles are safe and sound and well taken care of.

The drama this week is not so much with my boys as it is with us and the move. Talk about cutting it close to the wire!!!! I have yearned to "nest" for months now! All I was able to prepare was done on bed rest and on online; needless to say, not much of anything! I suppose I bring the stress of moving upon myself. Most people take their time to move and are satisfied with doing so...NOT ME!!! and definitely not me with four little stinkies on their way home! Anal me has to have every picture hung, every kid piece of furniture put together, and all things in their place within the first 2 days of moving. As tiring as it was...it is done! I think the harder part of the move was being away from my babies. I usually spend 8 hours give or take a day with them; and with moving, I barely spent an hour there. Talk about feeling guilty! However, I would rather buckle down and get it all done in a few days rather than letting it linger on. I also had to just face the fact that the more organized I am before the kids coming home; the better it will be for us all!

The boys have had an overall good week. Big news this week is Grayson went from being on 4 liters of oxygen down to 3 liters...this is HUGE as he was able to have his first bottle!!! He showed all of his brothers up as he sucked it dry and barely dribbled! Keaton and Camden came back off of the oxygen as they were getting over their surgery. Camden has done better with his feeds now that his formula was changed. The thickener added to Keaton's formula did the trick for him and he is no longer having the harsh reflux like he was and he is eating all of his feeds from a bottle which meant the feeding tube could be removed! This was the first time I was able to see one of my boys with nothing but their sweet faces. The dreaded eye exams were this week as well; you would think as many as the boys have had and I have been there for; it would get better...NOPE!! Brock and Keaton's vessels were growing out as they should be. Camden had a couple of gray areas which would be looked at again in a week. Grayson has stage 2 of ROP and one area that is stage 3. This is concerning but for now will be closely monitored on a weekly to twice weekly follow up.

Another week mark off of the calendar which means the boys being ready to come home is getting closer and closer. A bigger house, a wonderful and supportive husband, 4 beautiful little boys on their way to being healthy....I am blessed times four!

Brock came to visit Keaton and I

Brock and Momma




Grayson thanking Jesus for getting to feed from a bottle!
Nothing on his little face...but his face!

Saturday, August 13, 2011

Week 36

"Ahhhh!!!!...It's the youngest grandma of the NICU", this comment alone makes me know I have spent wayyy too long in the NICU with my sweet boys! The priest for the NICU and labor and delivery calls me this...I am the youngest mom but yet have been there the longest; ten weeks makes me the grandma of the unit to all the newcomers. This is all too real as I see families who have been delivered after us, leave before us. It is truly bitter sweet! I know how stressful the NICU is and I am happy for the families who are able to end their NICU journey and start a "normal" life. I would however be lying if I said I was not envious of them. I can't help but to let my emotions get the best of me when I see the mom's and dad's packing their stuff and putting their baby's into the car seat to depart from Wilford Hall's NICU. I just have to remind myself of what our situation started as and how far we have come...and know that one day it will be this momma packing her babies to go home!

This week has been nothing short of a week! The team decided to try Brock on room air and after successfully maintaining his stats, his cannula was removed and he was breathing all on his own. That same day, Camden decided he was over his cannula so he tore it off of his face. His nurse decided since it was already removed; to give him the benefit of the doubt and to try and hold his own! What do you know, the boy went from being on 1 liter of oxygen to none! He did great! Well...it didn't stop there! Keaton's nurse felt the competition and decided to let him try room air...SUCCESS!!!! Even Grayson was weened from the 5 liters he was on to 4 liters and was doing well! Camden had begun his feeds again and were taking them all by bottle, Keaton took about half of his feeds by bottle, Brock is just plain lazy so doesn't do too hot on bottling, and of course Grayson has not yet had the chance to bottle as his flow of oxygen is too high and would cause it to go in his lungs.

As big of milestones as the boys' were making, I knew they would take steps backwards as three of them were having their hernia surgeries and circumcisions. As much as I was looking forward to this day; I was also dreading it. I was told all of this time to expect Grayson to come back on a ventilator as his chronic lung disease was severe. Seeing my sweet little fighter on a ventilator for his first three weeks of life was enough; even expecting it could not prepare me to see him come back from surgery on a ventilator, that would just not be ok with me. The night before I was uneasy; dreading what I thought would be the inevitable; Grayson going back on the vent. We got to the hospital at 7 am and I sat and held each boy before them being wheeled back to the OR. I had hoped they would bring Grayson first, but he ended up being last. After a nine hour marathon of surgeries my last baby was getting ready to be brought back...the one I had worried about this entire time. When the OR called up saying he was waking up and was ready to be picked up; the RT team began setting up the ventilator. As I sat and held and consoled Camden, tears streamed uncontrollably down my face. My sweet boy had come so far and just couldn't go back on a vent....the ventilator is what is the cause for him needing 4 liters of oxygen, 2 breathing treatments a day, daily diuretics, and the list goes on. When I heard the doors open and the taradactal screams from what could only be Grayson James Evans....I continued to cry uncontrollably; but not sad....RELIEF! I thanked God for proving all wrong and for allowing my feisty fighter to come back kicking and screaming...just the way he left me!!

We also have been awaiting the surgery to see if it would end all of Camden's weekly issues. he began having high blood pressure the day before surgery; and they were waiting to see if it too would be resolved with the hernia removal. Unfortunately it was not. It got even higher when after being sedated during surgery it should have been low for the period of time he was out...and it was not. They started him on 2 rounds of lasix and if that does not solve it; he will be put on a blood pressure medicine and then he will have another work up to see if there is an underlying cause or if it is just due to his lung disease.

Out of the three boys, Keaton has had the hardest post op. his scrotum swelled to what the doctor's called a "quite impressive" size. It really was just pain stakily huge! His face showed every bit of discomfort as did his constant d statting (dropping his oxygen and heart rate to extreme lows). He was the only little boy I have yet to hold after surgery since his vitals have been so tacky. All I can do is to continue to trust that he will overcome this hurdle and be on the up and up.

Brock came to visit his brother Keaton before Keaton's surgery

Keaton trying to get some rest!!!

Brock getting at his thumb after his bath

Holding Keaton!

Wide eyed Grayson...Oh Grayson!!!

Keaton getting ready to feed..."does my bib fit ok???"!

Keaton in his monkey get up!
10 weeks we have been on the NICU rollercoaster....i would haveg time ago but also know that when my boys are healthy and ready to come home....that is the time they are to come home. For now; I will continue to spend the majority of my days and short visits at night seeing my little stinkers. In between; I hope to find the motivation to begin packing this undersized house to move into our spacious new 5 bedroom home this coming week. I have longed for months to begin nesting...and I now have my chance; better late than never!!!! Ups and downs, milestones and setbacks...I will take all knowing I am blessed times 4!!!

Saturday, August 6, 2011

Week 35

TDY...As much as Jeff has gone out of town for a TDY I should be use to hearing the words and should always expect one to arise. I don't know why I thought us having quads would just erase him from every TDY or deployment...but as I found out this week, it definitely does not. I understand that being in the military a family comes to expect and accept the fact that their spouse is going to leave; it comes along with the job description. When he told me that he was going to Ft Walton Beach for a week I found myself a bit perturbed. If his work truly understood what it was like to have four babies in the NICU and the constant feeling of the unknown...someone else would have gone in Jeff's place. However; it is what it is when it comes down to it so a week we did without Jeffrey. Every other time Jeff has left I was sad for myself...I was going to be alone and woa as me. This time I was not sad for myself; but for my husband and little boys. I can not begin to imagine the toll it would take on Jeff missing out on holding the boys, being there to see all of the cute things, witnessing their little milestones like big boy baths and sucking down bottles. It also got my wheels turning about what it is going to be like when he is gone on deployment or on longer than a week TDYs...I can only imagine of the hardship on all family members and can only hope that the inevitable does not happen anytime soon. Being a mom, I have a greater since of gratitude and respect for the mothers and spouses who have, had, and will endure deployments.

I know my boys are not home yet and can not begin to conceive how much harder it will be when they are home; but it has been a rough week being by myself. I can not explain how exhausting it is to still lead a life (errands, groceries, laundry, appointments) and juggle going to the hospital as well. I would not change it for the world (well; other than the fact to have them at home) but it just makes for a long and hard day. I like to get to the hospital by their mid morning feed at 11 and I usually stay till around four to come home and do their laundry before going back at 8. I hate that I am missing out on any of their day, but I do my best. It kills me to walk in and see a nurse bottling my baby, changing their diapers, or holding them...I want to be able to do these things; it is my job as a mommy. I try and not let it get to me and to remind myself that this too shall pass and then I will have my fill of doing all of these things I am sure; but it is difficult to keep an upbeat attitude all of the time.

The week started out just amazing! Time is not going by any slower and the day that we are finally able to bring home the boys is coming sooner rather than later. That being said...it is vital that we get moved in and settled into a bigger home. Just when we thought it would never come...Jeff called and told me that a five bedroom house opened up...YAY!!! FINALLY I can begin to REALLY nest and prepare to bring home the boys!!! I do not look forward to having to pack and move by ourselves and still find the time to spend with the boys...but like everything else; it will work out some how. We move in the 19th of August which should give us ample time to be unpacked and settled prior to a baby coming home.

Everyone but Brock has a hernia that must have surgery to remove and originally all of the surgeries were scheduled for the 19th. Not exactly perfect timing since we were also suppose to move into the new house on that day. But moving was not the main issue. The NICU the boys are in now will be moving to the Army hospital on the 29th which is fairly close to the surgery day. We have been fair warned that Grayson due to his severe lung disease would end up back on a ventilator. I am weary about doing the surgery so close to the move day since the boys would have to be transported to the new hospital. Luckily; the NICU staff also took this into new consideration so the surgeries will occur this Friday. Hopefully this will allow the boys to get over any setbacks that do happen (if any). I hate to worry about things that have not even happened; however, I just do not think I can handle seeing my baby boy back on a ventilator and having him regress after everything he has been through. I will stay positive and keep faith that the unforeseen will not happen that way; but again...it is easier said than done.

Overall the boys had a good week. Other than tweaking the volume of their feeds, a few oxygen changes, etc...it was quiet. Although I missed Jeff not being home and able to come and see the boys; it did allow for me to get lots of loving with the boys since I was the only one doing the holding and feedings (usually we are only allowed to hold each boy once a day; however, they are becoming more lenient as they are bottling more). Days spent at the hospital fly by when you have 4 boys to love on, feed, bathe....:) I was looking forward to Jeff coming home and getting to see the boys; I wondered if they would look bigger to him. I do believe I was more anxious than any of them!!! How sweet it was to see Daddy get a good look at each stinky boy and get to feed and hold some of them; it makes me absolute melt to see him interact with his little men! And it was no shocker that Jeff thought the boys had grown!

Our quite week got a little noisy during our night visit on Friday. Just as I sat down to bottle keaton and Jeff sat down to bottle Camden...Camden had a 22 residual. This was huge; more than half of his feed. UGHHHH...tears automatically streamed down my cheeks...please not again! The doctor came out to tell me what would be done (I could practically tell him as we have gone through this with Camden every week for the past month). His feeds would stop, films taken, labs drawn, IV started....and the work up list goes on. His assement showed his bowel was distended and the film came back looking not so good either. The word that I dread hearing was said...NEC. He had showed enough signs that NEC was now a concern although it will take a few days of more tests, observing, etc to know. He will not be fed and antibiotics were started and will be given until a more conclusive result comes back. BAM!!! and it hits again. This is the roller coaster we live on a daily basis; a quiet week can become chaotic in a second. As frequently as this has happened with Camden, I couldn't help but to question if there is a cause that is going unlooked. i am not a doctor by any means; but I know my kids and see enough to know that a weekly recurring problem might have an underlying cause that they are not seeing. Camden has the biggest hernia and is hard to push back. Could the hernia be the cause to all of this...I had asked the question before and was brushed off but this time I would not allow them to overlook my concern. After talking to the doctor, there is a possibility that all of these weekly issues is due to the hernia; and if it is, surgery on Friday will fix it. Although I do not want any problem with any boy; I would rather they find a definite cause to why Camden has the weekly events; and if it is the hernia that is the cause...let it be since this is completely fixable!!!

I could sit and worry about what is to come; or I can give thanks for all we have been given...My family is blessed no matter what hiccups comes our way!!! And we are not just blessed; we are blessed times 4!

Keaton in his monkeys
Baseball Brock
Roarin Brock
Handsome little Grayson
Grayson questioning bath time
Cam in his monkeys!!
Camden pooped out after being poked
Dad feeding Brock