Friday, May 29, 2009
Wow, strange to think that yesterday was my actual due date. Evan hit his 40th gestational week yesterday...yet he is almost 3 months old! Messes with ones head! Yesterday I took Evan with me to the cemetery to visit Zac's gravesite. Evan was fussy the whole way there...and he is never fussy in the vehicle. I let myself think that maybe he somehow sensed something. Who knows. But I wanted Evan with me on this day to visit his brothers site. Even though I know that Zac is not there...I know he is in a much better place where he has not suffered one day. I know he is with his other brothers. I know he is with family and friends who have passed on, and I know they are watching over him for me. And I know that Zac is with me every day in my heart. I've been struggling. Most of the time I am filled with joy with Evan...but the sadness of missing Zac has just been overwhelming. Yet I carry on with a strength that is beyond me for the sake of my husband and my son. I love my men dearly! Ah, the sadness will always be a part of me. But I can't allow it to BECOME me! The wildest thing happened. I got in to see my hair dresser yesterday on short notice and phew...good because my hair was becoming a nightmare. My mom came and babysat Evan and I actually went and did something for myself. Well, as I was walking to my stylists chair I heard someone say my name. In the seat next to where I was going to be was my absolute most special NICU nurse. She was with Zac a LOT in his three days of life, and after his passing she and I would talk about him often. One day she told me how she was getting ready for work one day and suddenly all she could think about was Zac, and the way he would look at her while they were together, and how this little guy is deeply tucked in her heart. Like I say, this nurse is VERY special to me. She was also with Evan from time to time. She was the only one who would really explain things to me, and I knew how much she truly cared for Zac, and cares for Evan. Well, all I can think is that God knew I needed to see her yesterday on such a bitter-sweet day. It was sooooooooooooooo good to see her!! She was exactly what I needed. To be with someone who was/is connected to my little fighter boy. Some days I really miss my NICU community! Evan is doing really good! Content, growing, bringing us much joy! Although this morning he was a stinker...he was wide awake from 1-4:50am!!!!! By the time I finally got to lay down the sky was already becoming light. Yup, the sleepless nights are real! He is just shy of 6lbs. That's so cool! Now all we need is his poor hair to grow back in from the spots that were shaved for IV's! Poor kid has a wierd Frier Tuck hairdo! He has the most amazing eyelashes. They are so long! He truly is a beautiful baby! Takes after his daddy!! Even though life did not turn out the way we expected...it is still good, and God is still good. He blesses us each day we have Evan in our lives. And He holds Zac in His arms until Zac can be in our arms once more.
Sunday, May 24, 2009
Working with dad
So just a few pictures of Evan's favorite spots...wherever there are arms, Evan is happy! :) hee hee hee.
Evan is doing really well from his surgery. He has done really well and puts us to shame with how well he dealt with his pain management. And he has been eating like a horse since the surgery. That's good though...he can afford to pack on the pounds!!
It's strange to think that as the 28th approaches, that was my due date with the boys. And here Evan is quickly approaching 3 months old! Wow, it's crazy to wrap my head around that.
Well, this is short but sweet, but Evan is beginning to stir. The eating machine is waking!
Friday, May 22, 2009
Hello everyone. We are home once again. The surgery went well, and now it's time to heal and recouperate! Yesterday morning when we handed our baby to the OR nurse I lost it. It was so hard to do. Once the surgery was over the doctor came and talked to us and said that Evan did perfect with his anesthetic, and with the surgery. By the time I got to go to the recovery room Evan's breathing tube was already out, and man oh man was he screaming. It broke my heart. We were both wheeled up in a wheelchair...me holding and comforting Evan. He did really well, and then just after lunch he was having trouble with his breathing and his respiratory numbers were low and sporadic. So he was watched closely. And that's where my mental breakdown began. It was so hard to have him back on monitors and listening to the beeps again. My wonderful mother came and hung out with me once more throughout the night. I finally got a few hours of sleep...but I don't think my mom got any! We knew there could be some breathing issues with Evan due to his history of apneas and brady's...so we we should have been mentally prepared, but I had had NO sleep the night before the surgery so as the day had progressed I broke down more and more. Everything was hitting me, and I was beyond overwhelmed. Through the later day and evening Evan's breathing got much better. By this morning we were ignoring the monitor completely. I stopped by the NICU to say hello to some of the nurses and a couple of the moms that I have come to care about. I had a nice chat with everyone, and a few of the nurses came to Evan's room to see him!! It was so sweet!! I wanted to smuggle Evan out of little Ped's and take him back to the NICU. It is SUCH a different atmosphere, and little ped's is so much more independent. At one point I didn't see Evan's nurse for a couple of HOURS!! It was a good thing I didn't leave his side or I don't know WHO would have been paying attention to him!! It was just frustrating after having such care in the NICU. But we managed. Anyhow, just after 2pm we got the word that Evan had been cleared for discharge. It was GREAT!! Before we left we stopped by the NICU one more time and saw some of the nurses, one of Evan's neonatologists and the resident neonatologist. Everyone was so happy to see how well he was doing. The ride home was nice! Nice to know we were heading home and nice to know that for the most part, we are done with the hospital. I will be happy when Evan is right back to his old self and not dealing with healing. His surgery was done laprascopically, so it was less invasive and the incisions are so hard to even see! Pretty cool! Today Evan's appetite has been huge! But yesterday he hadn't eaten anything for 11 hours. He had an IV, but no milk for 11 hours. So he is making up for it today! Right now he is sound asleep in his bed with the occassional grunt and squirm. He is on Tylenol for pain control, but he doesn't seem to be too uncomfortable so that's good. We met a young mother last night who just blew us away. Her daughter was born with a spinal disease, and with this disease children aren't expected to live past the age of 2. She had come in JUST to have her daughter's nasal prongs changed, but in receiving saline, the fluid entered her lungs and began a spiral of downward events. We watched as this young (and I mean young) mother doted over her daughter, patting her back, adjusting her positions (she can't move on her own), suctioned her daughter's mouth and throat and rocked with her daughter in her arms. Today something big happened and they were whisked away to PICU and then brought back to the isolation area of little ped's. She saw my mom and told her that she was told that her daughter had maybe hours, days or weeks left to live. She signed a DNR because she no longer wants her daughter to suffer. She and my mom had a good talk last night while I slept. My mom shared my story with her, and she said to my mom that of all the animals lambs are the only ones to sacrifice themselves in the place of another member or their herd...and that Zac sacrificed himself like a little lamb for the life of his brother Evan. As my mom shared this story with me (while we were drinking our starbucks in the main mall), we both broke down in to tears. I miss my Zac. I prayed the whole time Evan was in surgery that Zac was looking over his brother once more. I truly believe that Evan has his brother right by his side every minute of every day. Evan has an angel that knows his name. I am still so broken that Zac is not right here with us. That we don't get to look in his crib and see those beautiful searching eyes looking up at us. That Evan will never get to be with his brother again until heaven. And as we watch others with their sets of twins and see the joy the get...it hurts knowing that our little boy is missing from the picture or our family. We only get to hold him in our hearts. And then I get angry. Angry that God gets to enjoy him while we continue to mourn for him. I'm angry that such a big sacrifice had to be made by my first born son in order to protect his brother and his mommy. And I don't understand why such a huge thing would be asked of such a little angel. I know he doesn't want me to be sad or to be angry. And for the most part I do my best not to be. I am grateful for such a special little boy who saved our lives. I am grateful that one day we will all be together again. I was blessed with 28 precious weeks with him, and then 3 days to love him and to be able to say goodbye to our amazing little boy. I am such a mix of emotions right now. I know that I will continue to feel like this. All the confusion, all the changes in our lives and adaptions we've made. I have spent the past 3+ months of my life in the hospital, and now that we are done with it...I feel almost lost. I miss the wonderful people I met in NICU, and miss the friendships that were formed even through the circumstances. I feel like I have to readjust to life from today on. Like today is the beginning of the rest of our lives. And I almost don't know how to deal with it. I am excited from this point on to be focused on Brett and Evan and all that life has for us. I am excited for Evan to be completely healed and just getting to enjoy our healthy, strong little boy. I guess right now I am just tired for all that has gone on. And realizing that from today on we have a "fresh start" so to speak. I am realizing just how exhausted I am!! I think I could sleep for a week!! Thank goodness Evan bottle feeds too...I think Brett will be on feed-duty tonight!! 2 nights of no sleep is no good!! I'm excited for June 22nd!! That marks 6 weeks of Evan being home, and the time that we are "freed" to be out in public with Evan!!! I've had lots of people ask what they can do to help us out...and I'd like to throw something out there. The NICU has become a very special part of our lives. The babies in there are special children and people who have never experienced the NICU will never understand what goes on in there. I would like to ask that if any of you feel led, the NICU desperately needs sleepers of small sizes (ESPECIALLY preemie). If people feel led I would love to ask that if you have the means to purchase a sleeper (either yourself or as a group) and then get them to me, I am planning to gather as many sleepers as I can and they will be donated to the NICU in memory of Zac! I want Zac to be an angel to carry on something special to others in need in the NICU. This will also be a request made once Evan's baby shower is organized...that for every gift Evan receives that a sleeper will also be brought for donation to the NICU in memory of Zac. The anit-scratch mitties would be a good item as well! I will take the donated sleepers/mitties to the NICU at the end of June or beginning of July. Anyhow, I suppose I should go. Evan is beginning to stir so I should be ready for him! Thank you so much for all your prayers before, during and continuing on for Evan regarding his surgery...well...his life in general! You are all angels to him!!
Wednesday, May 20, 2009
OK people, need some prayer for our little guy!! His surgery is on for tomorrow morning. We have to be at the hospital by 6:30am and his surgery is scheduled for 8am. It's going to be tough because he can only nurse up to 4am, and then from 4-5am he can only have pedialyte or water, and then after that nothing. It's going to be interesting because I don't think it can be perfectly timed to nurse him so I might have to just wake him up and try to feed him at 3:30am. And I'm not sure how he'll do with pedialyte or water. And it will break my heart to see him hungry! There had been talk of moving his surgery to 11am, but thank goodness that didn't pan out. We just want it done with. And then he will have ALL day to recoup and will stay at the hospital over night. I have moments where chills of pure fear overtake me. I know everyone says it's "routine" and simple and non-invasive...but I'm still frustrated that this little fighter has to experience yet another thing. And everyone keeps saying he'll be fine...but I heard that through the whole experience with Zac, that Zac was going to be fine...and look what happened. So it's hard to trust the whole "he'll be fine" statement. And logically I know that Evan WILL be fine, but I won't be able to rest until it is over and we are sent home with confidence that he IS fine! Please pray for the surgeon, the anesthesiologist, the nurses and his after care nurses that God's hand will be guiding them every moment and that things will go just perfect. Please pray that Evan will recover from the anesthesia with no issues. The hope is to have a local anesthetic, and that is what we will be requesting, but that may change once they get in to the OR if it can't be done. Then he will have to have general anesthesia and will be intubated...ugh. Please pray for Brett and I that we will be able to rest well tonight. I know Brett won't have trouble sleeping, but I know that I will be struggling. I don't like stuff like this, and to have to watch as someone takes my baby from my arms to do this procedure...the trust that I have to force on to myself is huge. I just want it over with and I want to be able to rest well and watch my son recovering with little to no pain. I am looking forward to life after all this! I am looking forward to the hernias being repaired so there are no concerns for other complications, and I'm looking forward to life being "normal". Thank You for your prayers. I will update on things in a few days once Evan is settled in. Pray hard!!
Wednesday, May 13, 2009
Our final departure from the hospital!
Walking out the NICU unit for the last time!
Happy to be going home!
In my carseat heading home! Look how tiny I am in here!
Well everyone, our little bean is home!! On Monday we finally got the final word that Evan was able to be discharged. His repeat bloodwork showed everything normal. Unfortunate that they had delayed the surgery, but we are dealing with it. It's the only thing that hinders complete elation of having Evan home. The "burden" of being "doctors" to Evan's hernias. Ugh. His surgery has been scheduled for May 21st. Please pray for this day. I'm really nervous about everything and it is looming. Nervous about the people who I have to entrust my childs care too, and to deal with being on little peds instead of NICU. At least in NICU I knew all the nurses and residents and they all LOVED Evan. But what can you do!
Monday night was funny. Poor Evan was all off schedule with his feeds but we sorted through it. Last night he decided he wanted to be wide awake at 4am for 2 hours. How funny!! I just burned out and asked Brett to take over and give him a bottle so that I could sleep for a little while. Brett is AMAZING with being right in there. He is such an awesome daddy!
Today Evan had a big day. At 1pm he had his first immunization shots! Poor little guy!! He did well though. We also weighed him and he has hit the 5 pound mark! SWEET!
Brett does Evan's hernia reductions (pushes them back up in to their appropriate areas) and tonight he felt that they were much more swollen and difficult to reduce, so off to Peds ER we went. They were all very helpful and gracious to us. I was in tears the whole time. Just really tired, and really worried about his hernias and the possible complications that could arise from them prior to surgery.
As amazingly happy as we were to take our final steps out the NICU doors, it was bitter sweet one again. It hurt so much walking out those doors without Zac. And it was sad to say good bye to some of the nurses I've become close with, and with a couple of the NICU moms that became real support systems. It will take some adjusting for me to realize life without these people.
But it is so nice to just be home!
We are loving every minute with Evan. The dogs just adore him! When Evan cries they get so concerned and just sit by his bed.
Evan's bedroom has been pretty much completed. I just have a wall stensil to do and to hang some pictures. But Evan sleeps in our room right now in his travel lite pack n' play. It's perfect!
Monday night we had to sleep with a lamp on and the TV on all night. Evan is used to all the noise and commotion of the NICU so the quiet and the dark are foreign to him!! It will be an adjustment for him!
We are finding out groove and I am TRYING to sleep when Evan sleeps but it's tough! Tonight Evan has been sleeping quite a bit and not really hungry because of his vacinations. It feels worrisome with him not eating as well, but the nurse said that's common. So hopefully tomorrow he will make up for tonight! He's had such a big day today he needs all the sleep he can get!
PLEASE continue to pray for little Evan and his hernias. Please pray for the right surgical team and anasthesiologist to be on that day. Please pray that he will have a wonderful team of nurses during his recovery, and that his recovery will be quick with little pain or set backs.
Saturday, May 9, 2009
OK, this will be brief as we will be heading back to hospital shortly. We got to the hospital early Thursday morning for Evan's surgery only to find out that his Nutrafil level had dipped again which made the surgeon uncomfortable to proceed without a hemotology consult. Well of course that would be the day that there was no hemotologist available to look at Evan's blood smear. So...surgery was cancelled. I had a melt down. Not because I WANT the surgery, but just because it is another delay and more to worry about. Evan's neo-doctor really doesn't think that the blood result is anything other than something preemies white blood cells do which is dip and rise. He doesn't think it is due to a looming infection because Evan is otherwise completely healthy. Sooooooo, that's good anyhow. The only part that really SUCKS is that the surgeon doesn't have an opening for another 2 weeks. The good part...as long as the hemotologist agrees with the neonatologist about Evan's blood work then he can come home on Monday. BUT, if there IS a concern that maybe there is a hidden infection somewhere then he will be kept and put on IV antibiotics. So another delay...but at least we'd know he was going to be stronger in the end. What stinks about being discharged and then going back for surgery is that Evan won't be back in the NICU but in little ped's. It will be really hard for me to face a whole new bunch of nurses when I've come to love everyone in the NICU! Oh well...like Dr. Wonko says, I just have to "get over it" because it will be such a brief stay. And that those feelings are VERY common with NICU parents who have to go to little peds. No offense to the other ward, it's just that I know the nurses in NICU KNOW Evan and love him...so it makes it harder for me. So, that's it in a nut shell. I was very discouraged Thursday and yesterday. Then today because we had been told that Evan would be discharged today pending the answer from this hemotologist we got the car seat in the car, the diaper bag packed and we were ready to start our lives together at home. So when I got there and saw the look on one of the nurses faces...I knew. But, I had prepared myself for this result so I didn't completely lose it. In the meantime, IF Evan is released from the hospital prior to surgery PLEASE I am asking for HUGE prayers that he will not develop any complications with the hernia's so we don't end up in the Peds ER for emergency surgery. That is really freaking me out. Anyhow, I better run. I will keep you all posted on Monday. Hopefully with fun news. But whatever will be will be.
Wednesday, May 6, 2009
OK, I've just about had it. As of yesterday I have really started to crack and just become really tired and frustrated with everything. I know a lot of it is because I'm nervous about Evan's surgery tomorrow morning, but I am sick and tired of living at the hospital and not getting to enjoy the carefree honor that so many new moms get to experience. I live my life for my son by his bedside and day after day wonder if we will ever experience that innocent joy of mother/child at home?! I'm becoming so tired of never getting to experience that innocent bliss. Every step towards fighting for a child has been wrought with tears, pain, heart break, fears, worry, disappointment, loss...and I'm sick and tired of it. I want to be home with my son, holding him with no worry of being asked to step out of the bay while another child is brought in, or a procedure is being done. I'm sick and tired of seeing all those tiny, sick babies that so many of us parents sit and wonder about...will our babies ever get to come home?! I'm sick and tired of the total unawareness that fortunate people have...and that the first question when meeting someone new is "do you have any children?" Don't people understand that question can be a knife to a persons heart? I know it is just small talk, but to the person being asked...that question rips at their soul. I'm tired of unanswered prayers for so many in the desire for a child. I ache for those who have also dealt with losing a child. I'm envious of families who blissfully walk through childbearing years. Like I said...things are just building up and I just need to vent. I'm tired of being told that Evan's surgery is routine and having it sound like it's no big deal. Ummmm, yes it is...TO ME! My stomach is sick at the thought of his little body on a table and a knife being taken to him. I'm sick at the thought of seeing him connected to wires and monitors again, I'm sick that I can't fix this either. Yes, I'm grateful that it was caught and that it will be dealt with...but I'm just tired of delays for his homecoming. I am so very thankful for a friend who has helped ease some of the worry of tomorrow's surgery by being Evan's guardian angel...I thank you for watching out for our little guy!! I can never thank you enough! This morning Brett and I both went for rounds to talk about some questions about tomorrow's surgery and THEN we hear that Evan's blood work from yesterday came back showing his white blood cell count a little on the lower side...which means yet another POSSIBLE flipping delay in his surgery. It isn't low enough that they would start antibiotics in question as to whether he is developing an infection, but it is a possibility. The doctor said that he thinks Evan is a well baby, and that it could have just been the way things read yesterday...so he ordered more blood work for today to recheck the count. Evan's white count was at .7 and .5 is where they would be concerned there may be a possible infection brewing and would start IV antibiotics to treat it. When I heard that I very nearly broke down. If that turns out to be the case I can pretty much guarantee that I very WILL break down. Who knows when he'd be coming home then because it would push the surgery to who knows when, and then recovery. Don't get me wrong, I'm not wanting to rush Evan, and things have to be on his terms...but I'm just getting discouraged in general. Some days I wonder what the point is in praying. THERE...I said it!! YES, I feel that way some days. If we are honest...don't we all feel that way some days?! I want to be strong, I want to be trusting, I want to have faith in the answers of prayer...but some days it's hard not to wonder..."have you forgotten about us?" Yet I know God hasn't because here is our little boy growing so quickly and so strong and so healthy. Our precious beautiful boy. Then on Sunday night Evan was moved to bay 6...that's the bay every NICU parent dreams of...the last bay before heading home. Only to find when I went in yesterday morning to feed Evan at 6:30am that he had been moved all the way back to bay one. And for no other reason than they were down a nurse and had to reassign some babies to different bays. I was so choked. Why did they have to chose Evan?!!! I know it's because he requires the least amount of intensive care so they mixed him in with high intensive care babies. But I HATE bay one!!!!! Here I am on Evan's demand feed schedule where I have to feed my son with no privacy at all as other dad's walk by as I am feeding Evan! It's a good thing I have no shame left! But yesterday I had literally JUST put Evan on and he began to feed and I was asked to LEAVE THE BAY because the nurses were going through new arrivals and the information is private. I totally understand that...but try explaining that to my baby who has been waiting to eat and then has to get pulled off and starts howling because he's hungry. By the time I was able to get back in he was not a happy boy! How's that for being "relaxed!" While I was in the hall with my mom (thank goodness she was there to lend some support as I was about to blow a gasket!) one of my favorite nurses walked by and asked how Evan was doing and I literally burst in to tears. I was just DONE. I needed to release the built up frustration. She felt so bad. And I felt silly for my outburst, but I just couldn't handle it any more. She gave me a hug and tried to cheer me up. Then another one of our nurses walked by and hugged me too and encouraged me. Evan's nurse for that day felt SO bad. I am usually able to keep it together and be understanding and accomodating and polite and courteous...so they knew I was beyond choked. One nurse kept apologizing over and over. So let me ask...WHY put Evan back in that bay where things are so chaotic and we will be continually interupted when he is on a demand feed schedule???!!!! Man...I'm getting steamed again just thinking about it. See what I mean...I'm on my last straw. So if any of you out there could send up a prayer for me for strength to get through these next days I would appreciate it. I'm too choked to pray for myself. And PLEASE pray that Evan's blood work will come back normal, that he will be able to proceed with the surgery and that he will bounce back with flying colors so we can get him the heck out of that hospital once and for all!!!!!!!! It has been 3+ months of me living at that hospital, and I am SICK of it!! I don't know how much more I can take! Thank goodness that I get to snuggle Evan as much as I want after his feeds...that is the only thing that brings me comfort and peace at that place. Anyhow, thanks for letting me vent.
Saturday, May 2, 2009
OK, it has been a while. Now that Evan is demand feeding I am constantly running back and forth from the hospital and home when I am called by the nurses. I'm getting very tired, and looking forward to Evan being HOME! This week Evan had his second eye exam. Everything is great. But he was fully dialated, so he got these eye patches with a print of sunglasses on them. I will post a picture soon! It's too cute, but I felt so bad for the little guy!! THEN on Tuesday I stayed for rounds and found out that they expected Evan to be heading home WITHIN A WEEK OR SO!! I was all teary in front of the doctor, nurses and interns. They all laughed. I told one of the nurses the news and she said "DON'T say the word home!!! Without fail something always happens!" I figured, what more could possibly happen?!! And then yesterday morning happened! While Evan's nurse was checking his pulses she detected a HERNIA!!!! AAAARRRRGGGGHHHH!!!!!!!!! The doctor agreed. And now instead of coming home this week Evan is facing his first ever surgery!! I can NOT believe my poor little guy already has to deal with this! BUT, apparently hernia's are VERY VERY common in preemies, especially boys. I guess it's a good thing it was caught instead of me coming home and having to deal with it later. This way he really will be coming home tip-top. I'm just seriously struggling with knowing my babe will be back on monitors, IV and most likely intubated for a day depending on how he does with the anesthetic. OH YA...Evan no longer has any wires connected, and he sleeps in an open basinet!! Yesterday was the big day for all of that. Just before rounds and the finding of the hernia. So other than his second set back and delay in coming home, Evan is doing GREAT! He is nursing and bottle feeding. I am a lucky one! My child will do both! Sweet!! Speaking of...it is getting to be that time, and Brett and I have to head to the hospital. I will update more. This afternoon we went to Toys R Us and bought a bunch more stuff we need...and there is still more! On a different note...Zac's grave plaque was installed yesterday. We went today to see it...and the tears and the pain was overwhelming. I couldn't believe I was looking at my son's grave plaque. I hate that he is gone. I miss him with every breath I have!